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It’s Just Not Worth the Risk: Our Anaphylactic Experience

Last night was the worst night of my life. It was the night of my son’s first anaphylactic reaction.

Looking back now, it all seems like a nightmare – blurry, but terrifying all the same. I’ve been thinking about how I’d write this post throughout the day. How to begin, what details to include/avoid, etc. I’ve settled on brutal honesty and to start from the beginning, with a short history of my son, Tristan’s, allergies to date.

Allergies vs. Intolerances – conflicting tests results and history of reactions

In order to help identify triggers for my son’s severe eczema, we’ve had Tristan allergy tested twice for the standard top food allergies – once around 18 months and again just before he turned four-years-old (he’s 4.5 now). The first time, a skin test showed positive results for walnuts only and nothing at all in the blood test. The second time, a skin test showed positive results for hazelnuts only and nothing at all in the blood test.

Allergy testing didn’t shed any light on Tristan’s possible eczema triggers, but I kept hearing that it was likely food was still a trigger. Here is a great post from An Apple a Day Nutrition on this very topic. We embarked on an elimination diet, which you can read more about in detail here. Bottom line is we identified the following foods as irritants for his eczema and removed them from his diet – dairy, gluten, soy, corn, almonds, walnuts, hazelnuts, and pecans. All of this was done alone (which I do not personally recommend), without the help of an allergist or a nutritionist. We had met with multiple allergists in the past and none of them recommended follow-up appointments due to the negative test results we’d seen. So, we’d never had an allergist really follow our journey. In fact, I had to ask my son’s primary care physician for an epinephrine auto injector prescription as one had never been recommended for Tristan. (We initially used EpiPen, but have since switched to Allerject/Auvi-Q as it’s so simple for anyone to use.) I figured it was safer to have one, just in case. This is because once the offending foods had been eliminated from my son’s diet, when reintroduced six months later, some foods seem to cause more than just an eczema flare-up. Consuming dairy and gluten could induce coughing and asthma, which at the time was easily controlled with a dose of Ventolin. But still, having an auto injector just gave me peace of mind.

Basically, I never had a confirmation on if my son had true food allergies. In my mind they were allergies, based on FARE’s symptoms guidelines, but I wasn’t 100% sure and was always second guessing his reactions, thinking maybe they were sensitivities or intolerances instead. It’s because of my doubt, and the fact my son has never been under an allergist’s care, that my husband and I occasionally would conduct food challenges at home.  So often children outgrow their allergies, and since I wasn’t even sure my son had a true allergy, I believed that my son would grow out of his food issues – I wanted him to out grow them with all my heart – wasn’t wanting that and believing that with all my heart enough to make it true?

So, what happened and where did it all go wrong?

A risk not worth taking – EVER again.

It had been a while since we’d let my son have cheese because dairy aggravated his eczema. My husband and I had been discussing another round of at home food challenges to see if all his eczema triggering foods still affected him the same way. So, I gave him one tiny bite of sheep’s milk feta cheese four days ago. He had absolutely no reaction what so ever. AWESOME! Allergy free days – here we come! That’s the idea my husband and I had in our heads. I had some of the same feta left over when I made pizza for dinner, so I threw a few small pieces on my son’s normally cheese-free pizza. I gave it to Tristan and told him that it was the same cheese he’d had a few days before, so it was safe, and wasn’t it exciting to be eating pizza with real cheese?! He didn’t react with the excitement I was expecting, but I didn’t think much of it. He ate his pizza, but had picked off most the cheese. When I asked him about it he said it was “icky.” Hm. He used to love cheese. Secretly I was thrilled as dairy isn’t something I believe in consuming on a regular basis, but I didn’t read to much into his picking off the cheese. Later I asked him about the cheese and he said “I was afraid it would give me eczema or allergies.” Oh, poor guy, he knew something wasn’t right.

Fast forward 10 minutes.

He started coughing excessively and his face had gone red. He’d had a small virus all week, and coughing fits similar to this had been occurring on and off for the past week, so it wasn’t alarming at first. It’s when the fit continued for a couple of minutes that I took notice, as did my husband. I asked Tristan if he was alright, but he wouldn’t really respond. He started to look really uncomfortable in his body – a sign that his breathing was in trouble.

Red Flag #1 – I grabbed his Ventolin and gave him a couple of puffs, which did absolutely nothing. Ventolin ALWAYS provides him with relief.

Red Flag #2 – He asked to lay down.

I gave him the maximum dose of his Hydroxyzine (antihistimine) and continued to monitor him – never leaving his side. My husband and I were exchanging nervous glances. I grabbed the epinephrine auto injector and started to mentally prepare myself for what I may have to do.

Red Flag #3 – Tristan’s lips start to turn blue.

My husband calls 911 without batting an eye. I couldn’t believe this was happening.

Red Flags #4-7  Tristan wouldn’t respond to our questions, his face had swollen up so that his eyes were small slits, his body was covered in hives, he was itching madly.

The 911 dispatcher couldn’t tell me to administer the epinephrine, but she said if I had it and felt I should use it, to go ahead and she would walk me through the steps. I admit to tuning her out as I knew exactly what to do, although I was so nervous. (Thank you to all the lovely food allergy mom’s I’m connected with online who’s experience gave me courage in that moment.) I plunged the injector deep into my son’s thigh and he screamed out. I could tell he was less than thrilled that I held the needle in his leg for a long 10 seconds, but given his current state, it was the least of his worries. I removed it and was surprised to see so much blood – a little trail down his leg. Within a few seconds his lips which had become purple, lightened up a bit, but were still definitely blue. All of the other symptoms remained the same.

EpiPen Jr. - post injection

EpiPen Jr. – post injection

Less than one minute after administering the epinephrine and maybe three minutes after calling 911, the fire men arrived and quickly assessed our situation and helped us prepare for the paramedics to arrive. Maybe two minutes later the parametics arrived and started hooking Tristan up to their machines and took his vitals. They were wonderful and took charge and were just perfect with Tristan. They immediately got him started on a nebulizer alternating with Ventolin and oxygen. Then they loaded Tristan up in the ambulance and I joined him on the ride to the children’s hospital.

During the ride the paramedic said Tristan wasn’t responding enough to the first dose of epinephrine, so he gave him another dose and continued with the Ventolin and oxygen breathing treatments. He started to look a little better and the itching had stopped, most likely due to the antihistimes. Once we arrived at the hospital, his swelling had gone down quite a bit, but his hives and wheezing remained, so he continued with breathing treatments. It was around one hour after the attack started, that he finally was back to normal. Since he had two doses of epinephrine, they kept him for observation for six hours.

The doctors were really great. One even commented how great it was that I wasn’t afraid to use the auto injector. The other one was a resident and asked for a full recap of the night’s events. She seemed surprised that Tristan wasn’t being followed by an allergist, when I then jumped in to tell her that he tested negative to dairy allergy. She was surprised, especially when I confirmed it was her hospital that did the testing. Yes, a reaction to dairy like that with a negative blood test result. Imagine!

Finding the good in such a horrifying event

There are a few positive things that have come out of Tristan’s anaphylactic episode.

1) A pediatric allergist from the children’s hospital will now gladly take Tristan on as a new patient right away. The average wait time to get a new appointment with their clinic is three years. I look forward to working with the allergist in trying to understand Tristan’s allergies – why he tests negative and why he can eat an offending food one time and be fine, then have a reaction the next time – if we wait several months the cycle starts over again – he can eat the food once in a small amount, but not the next time.

2) My husband and I have learned that it is absolutely not safe to do food testing/challenges at home, no matter how minor past food reactions have been. I am thankful to turn to the allergist for help with this going forward as I still have hope that Tristan will one day outgrow his allergies.

3) I have conquered my fear of an epinephrine injector and I realize my husband and I are both great under pressure and work well as a team.

4) (This may sound horrible) Tristan has seen what can happen if he eats something he is allergic too. It’s a horrible lesson, one I would not have chosen for him, but hopefully this memory will last forever and he’ll never be careless about his allergies.

 

Please share this story with anyone who may have a child with food allergies, sensitivities, or intolerances – or may have them themselves. Allergy testing is not the be all end all – there are false negatives, just as there are false positives. A reaction to food may start out as relatively harmless (itchy skin, eczema) and can one day, without warning turn into anaphylaxis. Just please be careful and do not take the unnecessary risks of conducting food challenges at home and without a physicians supervision.

UPDATE 2/18/2013 – Please read the follow-up post, After an Anaphylactic Reaction – Road to Recovery.

For further stories on eczema and food allergies, check out:

Three Lessons Learned from the History of Food Allergies

Top Tips for Traveling With Food Allergies & Eczema

Five Things Parents of Allergic Children Want You to Know

Son’s Delayed, Serious Allergic Reaction and My Guilt

 

 

198 Comments Post a comment
  1. Leah #

    I am in no way blaming you. I just want others to know… I am a parent of a child with allergy/eczema. We see a pediatric allergist in a hospital based clinic… We also tried elimination diets in order to help our son. However,!the allergist does not recommend this because kids with eczema are prone to allergies and removing foods that they once tolerated can actually CAUSE them to become allergic 😔😔

    Like

    January 6, 2017
    • Yes, I can see how that might happen, BUT if a child is sensitive to a food already and it causes them to break out in full body rashes and their skin is angry and unforgiving, I cannot see giving them that food in order to prevent them from developing an allergy. But perhaps in very small, occasional doses.

      Like

      January 6, 2017
  2. Patricia #

    Great article. I’ve used the epipen on my son who was I think 19months at the time. He had his first anaphylatic episode at 18months due to wheat. It had taken that experience for us to finally be referred to an allergist. Prior to this my son had severe eczema as a baby weeping at times. I noticed it would get worse with some foods but kept being told these were not true allergies because he was too young. After 5 rounds of steroids for asthma like symptoms all before he was even a year and half this doctor finally order a blood test because I swore his symptoms were reactions to food and not viruses. His doctor literally did the test to prove me wrong. She apologized to me when he tested positive for eggs,wheat,dairy,corn,soy. But never gave info on antihistamines or epipen. And said he could have nuts.2 months later he had his first anaphylactic reaction to wheat then nuts..then dairy eggs etc. My poor baby. The allergist finally seen us after 3 epipen uses because his minor cough wheeze with foods turned deadly over night. Turns out my guy was also allergic to bananas, peaches,lentils,chickpeas, green peas and others. She said that the minor allergies had a compounding affect that’s why it can make another reaction worse. Like when my son had a cold and came into contact with a banana he had a severe asthma attack that resulted in steroids treatment and his nebulizer for days afterword. I can say though that after using the epipen I have seen first hand that respiratory symptoms caused from allergies went away so quick. Better then any inhaler or steroids. Now I often wonder when he has asthma episodes if he has come into contact with an allergen and I just didn’t see it. Anyway I love your article. Its so important as a parent if you feel your child has an allergy demand blood and skin testing. I had to practically lose my son for a doctor to finally listen and get us the right help. Oh and my son has had blood test that some things registered just a little elevated for an allergy like egg and wheat but with the egg very positive skin test and with the wheat it was again slightly elevated for skin but both are true anaphylactic allergies. So trust your gut. And keep a food journal. Good luck to all the mommies caring for kids with allergies. Its alot for our little people. And if you have epipen use it right away. I’ve seen it just like the article when your not sure what is happening and try other methods first and your child gets worse. When used right away at onset of any symptoms or after confirmed ingestion of an allergen your child has a quicker and better recovery.

    Like

    July 19, 2016
  3. Katelin #

    Thanks so much for posting this, it has helped me a lot. My daughter has had eczema since birth. She is now 11 months old. At around 8 months old her eczema became much worse, at her 9 month checkup we were prescribed a steroid creme and told to keep using the hydrocortizone. 2 weeks later, after eating scrambled eggs for breakfast her neck and face turned red and she broke out in hives on her cheeks and lips. I took her to the doctor and once again they did nothing, said nothing but use hydrocortozone creme and it’s trial and error. Well after months of that answer, because she also had a milk protein allergy at birth, I was fed up. I mean my 9 month old’s face just broke out in hives. So I called an allergist myself and made an appointment. She had skin testing done two weeks ago and the only positive was to eggs. I was relieved to finally know, but one week ago she had another hives breakout in the same manner after eating peanut butter. She had tested negative to peanuts a week before and has never had a hives reaction to it before. We did a blood test on Friday and I’m waiting for the results but the skin test was already negative so I don’t know what to think or where to go from here, and it’s just so frustrating and has made me a nervous wreck. with the reaction she had last week she has had three hives reactions, and not just an eczema flare up, in three months. two happening within the same month..

    Like

    October 6, 2015
    • Hi Katelin – I’m so sorry to hear all this! Have you met with any practitioners to discuss how to improve your daughter’s immune system and gut health – both are very much linked with allergies and eczema. Since your daughter is so young, now is the best time to start working on those two things in order to see some positive changes and to help her overcome the allergic conditions. It’s worth a shot!

      Like

      October 12, 2015
      • Li #

        Hi,
        Just wanted to ask what kind of practitioners should I see for my eczema child? I’m going through terrible time handling this I would really appreciate if you can tell me. And if you know of anything that can be done to improve immune system and gut..thanks

        Like

        October 12, 2015
      • Hi Li – I know it’s hard. We went through a very hard time with my son too. I cried a lot during those years and I just felt so hopeless. The best thing for my son was dietary changes beyond just removing food allergies. But that’s only advised under a practitioners supervision to make sure the child gets enough nutrients. But to work on the gut and immune system, I’d recommend seeing a naturopath. Dr. Amy Duong is someone we regularly feature on our blog. She takes appointments via Skype. Check out naturalskindr.com.

        Like

        October 12, 2015
  4. Deb Scott #

    Hi Jennifer, I just ran across this and thank you so much for sharing your experiences! I just posted the link to a woman who is struggling to understand how her child feels with reactions, both skin and anaphylactic.

    One of the comments above mentioned latex as a possible trigger. I would seriously look at that possibility as hazelnuts and walnuts (and many other foods) are cross allergens for latex. That means they cause reactions that vary from Oral Allergy Syndrome (sores, itchiness, etc in and around the mouth) to full blown anaphylaxis. Cross allergens often don’t show up on test results or are unreliable. The excema and rashes you describe also sound a lot like latex allergy… especially when they are in areas where the clothing has elastic, or if he is handling rubber toys, pacifier, etc. If he has asthma, tears up, or acts out at the doctor or dentist, this is also something to look at. Latex is airborne, and wherever there are latex gloves along side latex free gloves, the latex will be breathed in and cause a reaction.

    Food handled with latex gloves will transfer the latex onto the food. That is one reason why an allergic child/adult will react to a food one day, and not the next. (or vice versa) It’s not the food he’s reacting to, but the contamination of tiny amounts of latex dust in the food.

    Latex allergy testing is usually done on history of reactions because it has a 1 in 4 failure rate! (with false negatives at least 25% of the time). Skin testing is never recommended because it can cause catastrophic immediate anaphylaxis. An allergist who is a specialist in latex allergy will know this.

    Many doctors think latex allergy somehow disappeared when latex free gloves became available, or that only nurses get it. The reality is that more and more children are becoming sensitized to natural rubber latex. In our support group, it is one of the fastest growing statistics! Children are exposed from birth when latex gloves are used, rubber bulbs for aspiration, rubber pacifiers (sometimes marketed as natural ‘hevea’), latex diapers, rubber toys, birthday balloons, ground up rubber tires in playgrounds, and more. Doctors often don’t know that it is airborne and place boxes of latex gloves next to latex free ones. It’s very tragic.

    Feel free to PM me on facebook if you have questions about this.
    Best – Deb

    Like

    August 20, 2015
    • Hi Deb –

      Thank you so much for your reply! Thankfully my son does not have an issue with latex. But I can see how confusing a latex allergy can be and how difficult it must be to identify possible cross reactions. Thanks for bringing this to our attention. Jennifer

      Like

      August 24, 2015
      • Deb Scott #

        What a relief! Thanks again for your excellent post. The person I posted it to found it very helpful!

        Like

        August 24, 2015
  5. bex #

    The story for your son sounds so familiar! 2 years ago I found out that I have a pretty severe egg allergy, I’m 28. I also have severe eczema that gets worse if I accidentally get exposed to eggs or have a virus or something that weakens my immune system. I’ve noticed my reactions are far worse if I’m having a flare up or if I’m sick. My allergy inspires a range of reactions including hives, swelling, and asthma. I also have a rescue pen. I’m lucky that I discovered this as an adult, way to go mama and dad for your quick actions in what sounds like a petrifying scenario! Since eliminating eggs from my diet, my sensitivity has improved. It’s easy to see progress and want to experiment with “normal” foods. But like you saw, immune system factors in. You might feel OK even if your body is fighting something off, and small exposures can be awful in those instances. I’m glad you have an allergist, resources and support are vital! Good luck!

    Liked by 1 person

    April 10, 2015
    • Thank you for your kind words of support. I’m so glad that you’ve been able to figure out how to best manage your allergy.

      Like

      April 11, 2015
  6. Julie #

    You mentioned your son had a virus earlier in the week prior to his reaction- did he have a fever and/or give him Tylenol for his symptoms? My son had an anaphylactic reaction to peanut butter a few days after he had a virus and I used Tylenol to keep his fever at bay…just curious if you did too. Also some other medical history of my son is that he had eczema at a young age (9months) and used topical steroid cream (Triamcinolone) very sparingly for 3-4 months. His reaction to peanut butter right after his 1st birthday.

    Like

    April 1, 2015
    • Hi Julie – Same here, we started using topical steroids on my son when he was probably 6 months old. Not something I would do again, but I’ve learned along the way. I don’t think that we gave him tylenol for that particular virus however, but it’s possible. For my son, the virus triggered his asthma, so his lungs were already a bit inflamed. I’m sure that was one reason why his reaction was so severe.

      Like

      April 8, 2015
  7. Cami #

    Jennifer,
    I just started following your blog…possible allergic 18 month old. So I am at the point of massive research sessions. I’m curious about Tristan & subsequent tests.
    Thanks.

    Like

    March 3, 2015
    • Hi Cami – I’m so glad you found the blog! I’ll be happy to chat and answer any questions you may have. Please email me at jennifer@eczemacompany.com – thanks! Jennifer

      Like

      March 16, 2015
  8. Corine #

    Thanks for finally writing about >Its Just Not Worth the Risk: Our Anaphylactic Experience | It’s an Itchy Little World <Liked it!

    Like

    July 10, 2014
  9. Amy Vail #

    Hi, I’m new to the whole world of allergies. My daughter had a mild sensitivity to eggs as a baby so we didn’t give them to her for a while, then similarly to you I (foolishly) did at home testing with her over the weekend and she ended up having a much more serious reaction and ended up in the ER. Anyway, I’m looking for some support from other moms with severely allergic kids and you mentioned you have some great online support, so I’m curious if you have any suggestions on websites or groups to join?

    Like

    July 1, 2014
  10. Heather Adkins #

    I was just wonderjng if I should get an epipen just in case. My daughter has a severe allergy to eggs and dogs they give her severe ezama and sometimes hives. It doesnt or has yet to affect her breathing. But I have heard that no matter what you have no clue how they will react next time. Sk do you think I should get an epipen?

    Like

    April 24, 2014
    • Hi Heather – It certainly wouldn’t hurt to have one because it is certainly true that you never know when the reaction can change and become more dangerous. It’s better to be safe for sure. Jennifer

      Like

      April 25, 2014
    • Lisette #

      Heather, I would carry an epipen if I were you. My sister’s egg allergy started at as hives only with an accidental exposure. Then on day it she got accidentally expose and she had trouble breathing. From experience eggs are one of those foods that end up in food you would not normally think about so having an epi-pen handy is a good idea.

      Like

      July 24, 2014
  11. Sarah #

    I feel like I have the same problem. Im testing negative but then I eat something and my throat closes on me. Not to the point I need to use the epi pen. Its frustrating I know its an allergy. The allergist now wants me to see a gi doc. He thinks its acid reflux but I know its not. Im an adult and have never had a problem with almonds or really anything one day I was eating them and bam it hit me. Along with apples and a ham that was smoked . The doc did say I was allergic to the tree nuts and gave me an epi so glad I have that. My family doc did blood test and came back positive for peanuts, tree nuts, soy, corn and wheat. The allergist ignored that test. Im so frustrated.

    Like

    April 8, 2014
    • Sarah #

      I have a 6 month old whos cheeks are red with eczema. It makes me nervous to think about her having a reaction. Were starting foods and if she can’t tell me something is wrong. I wont know cause it not a bad reaction. Are all epi pens the same dose? Just curious in case something did happen to her and i needed one for her.

      Like

      April 8, 2014
      • Hi Sarah – Yes, all children’s auto injectors are the same dose, something that is controversial for many as they think the dose should be customized for weight. Just make sure to use an children’s injector, and not one for adult’s. Jennifer

        Like

        April 15, 2014
    • Sarah – Your throat closes up and you tested positive and your allergist says you don’t have an allergy? Sounds like you need to find another allergist. I would definitely avoid the foods that cause you trouble and keep an auto injection on hand at all times, just to be safe. As for defining your condition as allergies vs acid reflux vs anything else, not sure it really matters – bottom line is you need to get to the underlying cause of these issues. Many times it’s a leaky gut or combination of other digestive problems. There are a lot of diets out there that can help get you back on track – GAPS, Auto-Immune Paleo, Body Ecology, etc. Seeing a nautropath or integrative doctor could really help you as well. Best of luck! You’ll get there! Jennifer

      Like

      April 15, 2014
    • RDW #

      Get a new allergy doc and get a full panel for pollens as well as food. My son and husband both have oral allergy syndrome because of pollen allergies cross reacting with food. You’ll need to avoid certain food, but it isn’t an epipen thing.

      Like

      June 16, 2014
      • Great suggestions! We do have a new allergist, which is great. Yes, although no one in my family has oral allergy syndrome, I’m familiar with it. Curious, can your family consume the cross reactive foods during the months when the pollen is less severe or altogether missing? I know it can go either way for some. Jennifer

        Like

        June 17, 2014
  12. Lizz #

    Hi Jenifer,
    Your story has me terrified. My daughter is 2 she is allergic to tree nuts n eggs but I believe it’s much more than that. We will fund out at our next allergist appointment. I had a question about your sons flare ups . Did u use steroids all the time ? My daughter’s always scratching its unbelievable.
    By the way what did u feed him as an alternative to milk.

    Like

    February 28, 2014
    • Hi Lizz- we did use steroid in the beginning before moving to natural products. There are a lot of great options out there. We love the Manuka Honey Skin Cream. You can also try ScratchMeNot mittens or bamboo gloves to prevent scratch damage. But with intense itching there is usually an internal issue like food sensitivities. Good luck St your next allergy appt. Just remember that sensitivities will not show up in allergy tests.

      Like

      February 28, 2014
      • Lizz #

        Hi Jennifer ,
        Thanks for your reply. What were the natural products that you used? We give our daughter hydroxyzine for the scratching but it does nothing at all. What kind of laundry detergent did u use? I know I’m sounding very annoying with all these questions but we are going through a tuff time.
        Thank you

        Like

        March 1, 2014
      • Hydroxyzine is what we used back when itching was relentless. Now we use manuka honey skin cream.

        Like

        March 14, 2014
      • We also like soap nuts for laundry, but are currently using a smartklean laundry ball that washes using minerals. We are very happy with it.

        Like

        March 14, 2014
  13. sabina begum #

    My son is nine months old and he has atopic eczema but has been under control and his skin is getting better since he started taking less milk. I am very confused and would like some answers as my son had a mild reaction
    when i gave him cheese spread and jam sandwich,after an hour he went hysterical started itching all over went red and face lips swelled up this was two months ago and just today i give him cheese spread but he didint eat it so i put cheese spread on mu fingwr and put in his mouth and has been fine so few days before tried jame samdwich was fine with that. Last week another episode of mild reaction took place after eating chiken made in tomatoe and few spices added with chappati. After an hour he starts ceyig really bad itching, slight swollen frm one side of face Nd lips slightly swollen this time i didnot take him hospital because as i had taken him last time and was not happy with he way things were handled was not taken seriously. I am very confused and worried as to what is going on.

    Like

    February 7, 2014
    • Hi Sabina – I’m so sorry to hear all of this. Was the chicken fresh? It’s very possibly he has a histamine intolerance. If he keeps reacting to new foods, you may want to research leaky gut syndrome, which is more common than most people realize. We’re trying to heal ours with the GAPS diet. Jennifer

      Like

      February 7, 2014
      • sabina begum #

        Hi jennifer yes chicken was fresh but what i did the next day gave him chicken seprate only managed to eat very little but was fine. Yes would look in to that just all very confusing as to what is going on he also has a genetic illness called chylomicron retention disease which means not being able absorb fat aswel as vitamins which he has to be on low fat diet and cooking food without oil. Thank you for the info you have provided will definatly look into it.

        Like

        February 7, 2014
      • Sabina, hope you get to the bottom of the problem soon! Jennifer

        Like

        February 14, 2014
    • The Fearless Blogger (@faryl) #

      Hi Sabina – I know your comment is from a few months ago, so you may have found out more info, but I recently read this and wonder if maybe pink peppercorns were one of the spices.
      http://christinascucina.com/2014/02/hidden-allergens-pink-peppercorns-tree.html

      Like

      August 4, 2014
  14. Kymberli Karim #

    My son will turn two December 21st & I hav been challenged with doctors not taking the necessary tests for my son bcause of negative results. I feel my son does have allergies but don’t know what at ths point!! I have done the food challenges @ home & feel he is allergic to gluten, he has had all symptoms of celiac but tested negative!! It is so frustrating to watch him suffer. He now has th patches on his bac to determine chemical allergies but I thnk he has food allergies!! Thank you for sharing your story, it just proves we kno ourselves and children better than anyone else!! I will cont. to find a solution & come to a conclusion with my sons situation…again thank you for sharing your story

    Kymberli

    Like

    December 10, 2013
    • Hi Kymberli – I know it’s hard, but you guys will get there. Maybe you can find an allergist willing to help you with a full elimination diet to detect for food sensitivities or allergies.

      Like

      December 13, 2013
  15. Tina #

    Wow that is SO scary! I am so thankful I stumbled across this post. My son is 11months with many food allergies. His first testing at 4 months didn’t show much, the second at around 8 months showed more, and our recent testing even more – the list just keeps growing. I keep trying to explain to family (who don’t think much of it) that one reaction does NOT dictate the next – but of course I’m sure I’m thought of as the crazy over-protective mother. When I was reading this I was reminded of one day my husband rubbing milk (one of the allergies) on my sons leg and no reaction. Later we tried it on the back of his neck and within minutes he was covered in hives. A similar situation at the allergist: when being tested for latex through the skin testing he was covered in hives that were spreading on his back – horrible. But the allergist wanted to test it again since it was a big diagnosis to make – so they tested again, that same day, on his arm…and nothing. She didn’t mark it as an allergy – but you better believe I did after seeing that first reaction and knowing my son was set to get surgery the next month in a hospital filled with latex! I wish people, family especially, and even dictors would take this a bit more seriously. :/

    Like

    December 6, 2013
    • Tina #

      Oh and I guess I should mention that I knew of his allergies prior to these testing appts due to eliminations and challenges so the allergist was just confirming what I already knew with some of them, but still more come up as negative that are definitely positive.

      Like

      December 6, 2013
      • Testing is definitely NOT 100% accurate.

        Like

        December 6, 2013
    • Wow! I’m with your better to be safe on the latex for sure! I’m so glad you found us here!

      Like

      December 6, 2013
  16. Jessica Smith #

    Hi my name is jessica about 6 months ago my 4 year od son went into anaphylactic shock from an allergic reaction. It happened in the very early morning and we still dont know why. He stated out with hives on him upper chest and armpits and within a half hour was everywhere and his fave was swollen. He has had blood work done which always comes back normal. And has had no reactions since. I need help

    Like

    December 2, 2013
    • Hi Jessica –

      The blood work can be very unreliable. But unfortunately, if you have no clue what caused this, there is no easy answer for now. I’d recommend you get a prescription for an epinephrine auto injector in case this happens again – then you’ll be prepared. And if it does, try to connect the dots.

      Like

      December 9, 2013
  17. karen #

    Jennifer,
    thank you so much for your story. my son’s skin test was negative for walnuts (he’s 5) and when I gave him a cookie with the equivalent of 1/2 a walnut in it, he said his throat hurt and was itchy. it was 7pm on a Friday, and we were at a school function. The walk in was 5 min away and they gave him Benadryl. nothing swelled up, but his voice was changing into a high pitched tone and he was very scared. he’s not allergic to anything else other than 2 antibiotics and environmental stuff. my question is how do you do food challenges if you don’t do them at home? He’s definitely not allergic to peanuts and almonds, but I want to try cashews and pecans. We see an allergist, would we do skin challenges at his office? thanks again for your help…
    KG

    Like

    November 11, 2013
    • Hi KG –

      You may be interested in the book “Asthma Allergies Children” as it’s written by a team of pediatric allergists who address questions just like this. They talk about how many allergists don’t like to do in-office food challenges anymore because it takes a lot of time for very little financial gain. If your current allergist won’t help you with an in-office challenge, then I would suggest asking around for another recommendation. You definitely want a doctor that is on your side. No allergist can argue with the fact that the only way to truly identify an allergy is via history with the potential allergen and via a food challenge.

      Jennifer

      Like

      November 12, 2013
  18. Thank you Suz!

    Like

    August 14, 2013
  19. I am glad Tristan is okay. I am considering asking our pedia for an epi-pen as well. I appreciate your blog and I am learning more about how to deal with my son’s eczema. I am the father to a wonderful 2 year old guy. We think the environment has something to do with it on some level and one of our attempts to heal him is to relocate (we are currently in NYC). We are adjusting his diet and I am learning on some of the steps you have taken (we’re getting an air purifier) so we can implement here. Again, thanks so much and I look forward to reading more about your blog-hopefully less on the “adventures”.

    Like

    August 13, 2013
    • Yes, definitely ask – it’s better to be safe and have one on hand. If you ever need it, which you hopefully won’t, you’ll be relieved to have one and you’ll be able to use it quickly. Try getting your hands on a trainer so you can practice using it too. We like the Allerject as well as the EpiPen. I definitely agree that environment can trigger allergies, eczema, and asthma, but I also believe it involves so much more too – like our processed foods, vaccines, etc. Diet does play a huge part and the air purifier can work wonders. You’re taking great steps to help your son, what a great dad! Thank you so much for your comment and please stay in touch! Wishing you guys lots of success in managing your son’s allergies. Jennifer

      Like

      August 14, 2013
  20. MapleMouseMama #

    Jennifer you have me in tears today, but I can imagine your own post anaphylactix ones were far worse. It is unfortunate the lessons have to be learned to keep our babies safe, but the positive results outweigh the negative. My son has been rushed to hospital twice now and each time we learn more about his allergies and everything else that can affect them. I will be sharing your journey and thank you for the courage to share with us.

    Suz

    Like

    August 13, 2013
    • Hi Suz – Yes, those were difficult times, trying to wrap our heads around the fact that our son’s mild allergies developed into full blown anaphylaxis. I’m thankful my son has able to learn so much from the experience too. He had another very close call recently – very borderline anaphylaxis – so between these two experiences, he’s quite understanding and very accepting of his allergies now. At five years old it amazes me how he really wants to play it safe and doesn’t mess around when food is involved. He’s so careful about what he eats and he even roll plays with his sister about eating out with food allergies. It’s so cute! And it melts and breaks my heart all at once. It’s amazing how these health conditions can make our kids stronger, for that I’m so eternally grateful! Jennifer

      Like

      August 13, 2013
  21. Kate #

    I have been going through the same thing with my with my 2 year old daughter. It started on valentines day where she was covered head to. Toe in hives. She has asthma and excema. Weeks went by and I kept a journal of what she ate and if the hives got worse. I narrowed it down to dairy and took her off all dairy. We went to see an allergist and she had a negative reaction to the prick test…although she broke out in hives under her armpits and on her legs. Both my mother and myself asked for an epi but the allergist made us feel stupid by saying..what for she isn’t allergic. So no follow up either. The next day. She had horrible hives all over which was now topped with excema. I have kept her off dairy and she has cleared up but sometimes she is exposed. I am so glad you shared your story because I am def getting an epi now! Food allergies especially in children is so frustrating and scary.

    Like

    March 30, 2013
    • Hi Kate – Yes, it certainly sounds similar to my son’s early days. I do believe however, that keeping him off dairy 100% may have actually created a stronger allergy. Looking back now I would have given him a tiny amount of dairy once a week, just so his body remembered how to process it properly. I wonder if doing this would have prevented him from going on to developing anaphylaxis to dairy. We can never be sure I suppose. Good luck and definitely fight for an epi. Jennifer

      Like

      March 31, 2013
      • Selena Bluntzer #

        I wouldn’t think so, because my daughter had several minute exposures to cow’s milk through my breast milk, then the few trials of it before we knew about her allergy and the goat’s milk yogurt incident, etc., before she had her severe milk allergy diagnosed. From my estimation, it was actually all of those small, repeated doses that increased the severity of her reactions, over time, and didn’t do anything to desensitize her (not that I was even trying to do that!) Strict avoidance (outside of a clinical trial setting) is best, so I wouldn’t think that you caused the reaction, by any means!

        Like

        March 31, 2013
      • I just don’t know. My gut is really telling me otherwise. I heard something about the Paleo diet that made sense to me today. It was that you avoid a list of certain foods all week, except for one day where you have a little bit of the avoided food, just to remind your body how to handle/digest those foods. I’m sure it doesn’t work for everyone, but I do wonder what would have happened if I had done this with Tristan’s allergies especially because they only triggered eczema to begin with. If he only had them once a week, maybe he would have been ok both skin and allergy wise. Who knows though? We’ll never be able to determine if his severe allergies could have been avoided.

        Like

        April 1, 2013
      • Selena Bluntzer #

        I don’t know if this reply will show up in the right place, because there is no “Reply” link under your reply, but about the Paleo comment…I am not sure if that applies in the same way, but yes, it can be very confusing. Usually, you have to keep something in your diet, regularly, if you DO have a tolerance to it, to keep from redeveloping an allergy, but if you are in the midst of having the allergy, exposures tend to aggravate the situation. *bang head against table*

        Like

        April 2, 2013
  22. Cam #

    Thank you for sharing your story. Our three and a half month old is having reactions to nursing. We’ve done an elimination diet and found he has reactions to peanuts, treenuts (including coconut), eggs, bananas, potatoes and a growing list of other things. This post is definitely going to make me more careful as we go forward testing foods… we’re waiting to get in to see the allergist… it’s a two month wait…

    Like

    February 27, 2013
    • Trying to determine triggers while nursing is even harder I’d imagine as you may have eaten any number of foods during the few hours between feedings. We did the elimination diet with my son when he was around 3, so it was much more obvious when we found a food that made him react with severe eczema. Hugs to you! And best of luck with the allergist appt. I hope the two months pass quickly for you!

      Like

      March 6, 2013
  23. Sarah #

    My son’s eczema, allergies and asthma have been a total guessing game. Afetr reading your post, I will be more cautious. I never really considered that he might have an anaphylactic reaction to something (as naive as that sounds)! My frustration with the allergy testing is that many of these foods that he has eaten since he was 1 (is almost 7 now) have not produced an allergic reaction, yet he tested positively for an allergy. However, it has been obvious for years that he is allergic to dogs and that didn’t show up at all in the skin prick. It did in the bloodwork. My poor boy not only has allergies and mild eczema, but has chronic dry eye. Not a good combo! He is very prone to serious eye infections, one that landed him in the hospital for four days after just being around someone who has a dog. That brings me to my point for posting: there is a lot of awareness about food allergies, but no one seems to be aware that animal allergies can be very serious. At the hospital where my son sees his amazing ped opthimologist dogs have been walking around at times. It is also sad because he can hardly go to anyone’s house because so many people have dogs! 😦 Breaks my heart. Your post was helpful for me in that I realized his allergy to dogs may require that we have an epi pen handy, just in case. Thank you!

    Like

    February 21, 2013
    • Sarah – I had no idea that animal allergies could be so severe either. Thank you for opening my eyes and bringing that to my attention! Jennifer

      Like

      February 22, 2013
  24. Oh wow. I think God wanted me to see this post today. I accidentally ordered my son a cheeseburger on a gf bun today…not a hamburger. I am normally hypervigilant, but today I didn’t realize my mistake till he had 1/3 of the burger gone. Thankfully, there was no reaction. But your post made me realize that next time he may not be so lucky. I’m so glad your little guy is doing well. How scary!

    Like

    February 19, 2013
    • That was such an easy mistake. It’s so hard to be “on” all the time. We’ve all had plenty of close calls – too many to be comfortable with I’m sure 🙂 I’m so glad he was alright.

      Like

      February 21, 2013
  25. Barbara #

    That is just so scary. Thank goodness your son is ok. I am so sorry for what you have gone through. I am new to this world and very wary of tests. My son’s allergist a few months ago told me his wheat skin test result was ambiguous and that we should give it a try. I gave him a tiny piece of bagel for lunch and I also did the stupidest thing possible for a nursing mother–I had some too. Within seconds of the bagel touching his mouth my son’s hands and face were covered with bumps and he became red and itchy also on neck and arms. I gave him benadryl and watched him nervously until I thought he stopped worsening. Later that day, when I nursed him for the first time after having eaten the bagel, he started coughing and vomiting and would not stop for 4 hours! I thought I was going to die of fear and guilt.

    Like

    February 19, 2013
    • Oh Barbara, you didn’t know – it’s not your fault. In fact, if you hadn’t tried the wheat, you still wouldn’t have known and would always wonder if it was a true allergy. Yes, it was horrible to seem him react that way, but the positive is that you know to avoid wheat now. Food allergies are so frightening, but I’m thankful other food allergy families can be there for each other online like this.

      Like

      February 21, 2013
      • Barbara #

        You don’t know what your words mean to me. Thank you.

        Like

        February 21, 2013
      • I’m so glad we can connect – food allergy parents are here for each other.

        Like

        February 21, 2013
  26. Candice #

    Thank you so much for sharing this! I will share in my food allergy community. http://www.facebook.com/ElijahsHope I’ve never had to use the Epi Pen on my son who is ANA to Peanuts/Eggs/Milk/Treenuts and it definately scares me. I am so glad you had an Epi Pen and that you educated yourself on how to use it and I hope your story encourages other moms to be pro active.

    Like

    February 19, 2013
    • Thank you, Candice for the support and for sharing you FB page. I’m looking forward to following it from now on. Jennifer

      Like

      February 21, 2013
  27. Oh my Jennifer! I do believe you and your husband deserve a huge pat on the back! You did everything right. I do hope your new doctors can help you out.

    Like

    February 17, 2013
    • Thank you Nancy! I sure hope so too. Fingers crossed 🙂

      Like

      February 17, 2013
  28. Stacey #

    Thanks for posting! Its crazy (and strangely comforting) that there are so many people in a similar situation. I’m embarking on dealing with a second child with food allergies and eczema/skin issues (similar with stronger sensitivity and the bonus of milk this time). If you have time, are there a few sites/blogs that you’d highly recommend? Luckily we have epi pens – but I’m feeling a bit overwhelmed dealing with it all! My 11mo old just got tested and it seems like a nutritionist is in order.

    Like

    February 15, 2013
  29. Jennifer MIchna #

    Jennifer, thank you for sharing your experience, I have a peanut allergic son and have never had to use the epipen, and am scared to do so, but know I would if I need to. We had negative test results for his allergies at first, but after a second round of testing, was able to get a positive result and a great allergist as well. Good luck and I hope your son is feeling better now.

    Like

    February 14, 2013
    • Hi Jennifer – I wonder if all blood allergy tests are the same, or if some labs are less reliable than others, as with IgG testing. Hmmm, something for me to research 🙂 I will be very curious to see how my son’s test results come back this time. We have our first appt with the new allergist at the end of April. I’m very happy for you and your son that you’ve been able to prevent an anaphylactic event.

      Like

      February 15, 2013
  30. Ann #

    Glad to hear that your son is doing better. My daughter was diagnosed with peanut/tree nut allergies at 18mths. She had a blood test a year later which came back negative for peanut/tree nut allergies. We then went to the allergist to do a food challenge and they decided to do the skin pick (before the food challenge) and it came back positive. The only explanation I got was the blood work just doesn’t work for her? We then saw another allergist right before she went to kindergarten and have not been followed by an allergist since, as they didn’t feel it is necessary? She is now 9yrs. and I get our Epipen prescriptions from the pediatrician. My nephew was diagnosed with nut allergies at 10yrs.

    Like

    February 13, 2013
    • Hi Ann – Thank you for your comment. Allergies are so baffling and the tests are so unreliable I’m finding. I guess we just need to stick with our mother’s intuition and keep our Epi’s close by. Jennifer

      Like

      February 15, 2013
  31. Wow! How scary?!?! I am so glad everything turned out OK in the end. You and your husband should be proud of yourselves for handling this reaction so well! Having a great allergist on your side is wonderful. Best of luck!

    Like

    February 12, 2013
    • Thank you so much! Yes, really excited for the allergy appt, but it’s at the end of April. Seems so far from now, but at least we have an appt.

      Like

      February 12, 2013
  32. Cindy Klein #

    Oh, my heart goes out to you guys! What an experience no one ever wants to go through!

    My 18 month DD has a severe case of eczema. She has tested positive for peanuts, almonds, pecans and eggs. Her latest scratch test showed eggs at a 2 though (nuts at a 4+). The allergist went on to say that he didn’t think it would be a problem if she ate eggs and to treat it as a non-reaction. I was NOT comfortable with that at all. I immediately started to look into all foods we ate for eggs and promptly removed them from our house. Reading stories like yours makes me even more happy that I trusted my gut reaction last week. And I will take a lesson from you, and only introduce his known allergens with a doctor in the future.

    I just read through your posts on Elimination Diet and that is up next for us.

    Thank you for writing. You’re stories bring me hope. : )

    Like

    February 11, 2013
    • Hi Cindy – Wow, that’s really all I can ask for and is the reason why I write this blog – to bring hope and ideas to those with allergies, eczema, and asthma as I believe we can all learn from one another. Good for you for sticking with your intuition and sending you much luck with the elimination diet. Please let me know how it goes! Fingers crossed! – Jennifer

      Like

      February 12, 2013
  33. Jennifer,

    Sorry I just read this now! My visiting relatives with the flu really tossed me for a loop! I’m so sorry you went through this. My stomach dropped as I read! Your son is the luckiest child on the planet. You handled the situation perfectly and even more impressive was your ability to write so eloquently about it and to highlight the lessons learned in such a honest way to help our own community. You are a gift to all of us!

    My skin is still crawling a I write this. I swear we all have some sort of invisible threat that links us together.

    Like

    February 9, 2013
    • Hi Caroline – Those are some of the kindest words that have ever been said about me. Thank you. You’ve made me all teary. We are all connected, food allergy moms working together to bring awareness to misdiagnosis, anaphylaxis, and so much more. I’m honored to be in such great company! Jennifer

      Like

      February 12, 2013
  34. Tattoomommie #

    Wow, I am so sorry to read of your articles. I am blogging because I believe your story needs to be shared! My children do not have food allergies, sadly I have been insensitive of others in the past actually suggesting they self-test. After reading your post I now understand just how dangerous that can be. Thank you for educating me.

    Like

    February 9, 2013
    • Hi there – Same here, I never dreamed my son could have been so sensitive and reacted this way. Lesson learned for sure. Sadly, it was the hard way. Jennifer

      Like

      February 12, 2013
  35. Hi Jen! I know about testing negative, but having positive reactions as I have personally experienced that. Just today I had a slight reaction to the Tdap vaccine. If there’s a light at the end of the tunnel it’s that you now have an allergist to bounce things off of!

    Like

    February 8, 2013
    • Yes, Heidi – you are right. It will be great to work with an allergist on all of this. Thanks so much for your comment!

      Like

      February 10, 2013
  36. What a well prepared mum you are – insisting on an Epipen, just to be sure. That is great that all is well in the end, and that you now get bumped up the que to see an allergy specialist. In our experience, although they can provide you with helpful information and medication, in the end, you are still left on your own to deal with the day to day stress of anaphylaxis and other food allergies. They may not be able to identify every food your child is allergic or even anaphylactic to, and unfortunately food tests are the only sure way of finding out. But increased knowledge, and your already vast experience will surely help you and your son face the challenges ahead.

    Like

    February 8, 2013
    • Thank you for your encouragement! Yes, I know from dealing with eczema, that we’re only going to be able to depend on an allergist up until a point and then we’re on our own and I must listen carefully to my mother’s intuition. Trying not set the bar too high for the allergist. We were extremely disappointed in the dermatologist at the same hospital, so trying to keep expectations low 🙂 Thank you again for your kind comment.

      Like

      February 8, 2013
  37. Peggie #

    I am so sorry that the medical community put you through the run around. I too have food allergies but never did they get quite as bad as your son did because I discovered them in my 20’s. I found the combination of foods wheat, yeast brewers (viniger) and bakers(bread), and milk caused my throat to swell. It didn’t shut but it was sure scary until I figured out what was going on. Perhaps the non triger for your son was because of only one item alone. Label reading is the worst thing on earth, and I feel for your son because he will miss out on some things. I used to eat ahead of things and go to participate so I could still have some fun, I am just glad I didn’t have the problem as a child. I am glad you found an answed. God Bless your family.

    Like

    February 7, 2013
    • Hi Peggie – I have heard about food combination allergies, although they are usually too hard to detect for most people and would be impossible to determine through blood or skin testing. How did you discover your allergy combo? You’re right on about label reading – I am the label reading queen now….we do what we have to 🙂 Thank you so much for the support and kind words! Take care. Jennifer

      Like

      February 7, 2013
  38. Thanks so much for sharing this very personal story. So much for all of us to learn.

    Like

    February 7, 2013
    • Hi Janee –

      Thank you so much. I sure hope I can help some food allergy families – that’s our only goal as food allergy bloggers, right? Jennifer

      Like

      February 7, 2013
  39. Ginny Marie #

    SORRY SO LONG!! This is our life, we do live this way both myself and my children. I so related to this story and I am so happy that your son is ok. it is quite possibly the scariest situation ever and it is not only myself but my 3 children. The eldest seems to not have too many allergies anymore but needs to stay away from salmon and shell fish. But the two younger test negative yet have had anaphylactic episodes that scared us out of our minds. However, I am, by far the worst of our bunch. I, too, needed to use 2 Epi’s and booked myself a room for three nights in Chez Hospital. Pumped with every way you can give Prednisone and rolled me out 30 lbs heavier. It turns out that I have a BLOOD DISORDER, my Tryptase (Mast Cell Count) is too high causing the anaphylactic reactions. I had a double bone marrow test and I have trace Mast Cells in my marrow but not enough to count. So it is not Mastocytosis. It is Mono Colonal Mast Cell Activation Disorder meaning that I have elevated Mast Cells in one colony not “officially” making it Systematic Mastocytosis. I am allergic to almost every food out there. I eat basically 20 foods and everything else closes my throat. It is easier to say what I can eat vs what I can’t. But the airborne Garlic and now suspecting onions will kill me. I miss out on class reunions, weddings, showers, and most all get togethers that revolve around food because apparently eating garlic for one night is more important sometimes that having me attend. I was never bitter because I have been dealing with this for 13 years but all of a sudden in the last 6 months, people have not cared to make accommodations for me when there was never an issue before. It’s sad how callous people suddenly have become to special needs. It’s just food. Garlic fest it tomorrow night when I wont be around if you really MUST eat garlic. Seriously! I so feel your pain and thank you so much for sharing your story. I hope that he doesn’t get scared to eat. If it is any consolation, my child who seemed to always have allergies of some sort, eczema the worst sensitive child has seemed to grow out of it all. We got past a certain age, removed the additives/preservatives/colors and salicylites (sp?) by doing The Feingold Program because of his asthma. And for the first time his skin was soft again. No bumpy skin that I was used to feeling on my precious child. He was just extremely chemically reactive. Once we removed all of that, what a marked improvement on his skin, asthma, allergies, sleep, behavior- OMGoodness Rickechet Rabbit /Tazmanian Devil after the Albuterol and other asthma meds. Its the other one who got them older (14) that seems to be getting worse. Mine started at 17 with medicine allergy and then at 24 with foods when I was pregnant and at age 35 had all my food come back positive for allergies at age 37 it became airborne. It got progressively worse with each pregnancy. Please contact me if I can be of any help. It’s been a long 24 year road for us with allergies/asthma – anaphylactic. Best wishes!!! So happy Tristian is ok!! But make sure you leave with meds. Food reactions stay in your body up to a month. I have a love/hate (2lb a day gain) with Prednisone. I am on a “Mayo” cocktail of meds and knock on wood haven’t had to use my Epi-Pen in 3 and a half years. The meds surround the Mast Cells and when I come in contact with allergins they bump together causing a “911 type call” but my mast cells are now “insulated by meds” so when they do bump together my body wont react in an anaphylactic way. My insurance will not approve Zolair. Frustrated that a cure is within my reach – yet so far away dictated by my insurance. However, if anyone has head anything pros/cons about Zolair would appreciate it. Maybe the denial is happening for a reason. Thanks.

    Like

    February 7, 2013
    • Hi Ginny –

      Wow, you aren’t kidding – you really are surrounded by allergies. And having to manage yours and the children’s, it must be so incredibly difficult. You sound so strong and positive despite it all, and I totally admire that. I hope I can be strong for my son the way you are for your children. I don’t know anything about Zolair, but I have asked on my FB page. Keep an eye on it for any responses – may take a day to see any feedback. Thank you again for all the information. It was great hearing your story and connecting with you! Jennifer

      Like

      February 7, 2013
  40. Thank you so much for sharing this. My son ( 2 years old) has never had allergy testing but has reactions to peanuts and wheat. I suspect there are other allergies as well. We’ve been wanting to have him tested but haven’t yet. When he was younger he would have mild reactions to peanuts but I’ve been worried his reactions would be much more severe now that he is older and hasn’t had any in over a year.

    Like

    February 7, 2013
    • Hi Holly –
      Sorry to hear your son has food allergies as well. It may be worth while to have him tested, just remember they are only about 50% accurate, if you can believe that. I’m so glad you stopped by as it led me to your blog and I am in love with your recipes. I printed off at least 10 to try soon. I’m a huge Mexican fan as well 🙂 And adore sweets. Jennifer

      Like

      February 7, 2013
      • I am so happy I found your site! I’ve never heard of anyone else who could relate to my kids allergies. I think some people (grandparents) think I’m making it up. It gets scary. I have to be very careful when we visit friends. Thankfully my son’s skin is the clearest it has ever been but for the first 15 months or so we looked horrible all the time. I wish I had found you during those months. I figured our those two allergies on my own.

        I added you to my reader. I don’t want to miss out on anything else. I plan to checkout more of the resources you mention this weekend!

        I’m so glad you found some recipes you like! Many have been tested on a couple of allergy-full (adult) friends, as well as my kids.

        Thanks!

        Like

        February 8, 2013
      • Hi Holly – The feeling is the same – I’m happy to have found you too! And I’m so thrilled for you that your son’s skin is so much better. I know how eczema and allergies can really change family dynamics and gatherings, so yes, it’s great to have a good support system in place – even if it’s a group of online food allergy mamas 🙂 Jennifer

        Like

        February 10, 2013
  41. Sida #

    I’m so glad your son is alright. I’ve read a lot of articles where people were too scared to use the EpiPen and the person having a reaction did not get the right treatment in time.

    About the allergy testing, those blood tests are not all that accurate. Also, on myself the skin tests are not accurate either. I am very allergic to tree nuts, and when I received skin testing, nuts did not react at all. The Dr. said it was very likely because of my eczema that my skin did not react. Because of how bad my skin is, they have a hard time doing prick tests on my skin, or even finding a place for them. Maybe I am an anomaly, but I just do not react to the things I am most allergic to. I don’t know what to trust! The blood test yielded about a dozen or so allergens, even rice! I avoided them all with no improvement. The only thing the blood test was accurate on was walnuts. My various Drs. said that those tests are more of a guide than an absoluteness.

    Also, there is such a thing as delayed reactions, though rare. Allergic reactions also tend to become more serious with each exposure. I’ve read articles saying that a person can have no reaction to an allergen at the first encounter, and a severe one at a second encounter. Oh and definitely trust your sons instincts and have him speak up if something tastes “weird”. To me nuts have their own unique taste and smell. I can tell if there is the smallest amount of walnut in a brownie in a single bite, I can also smell nuts being chewed from across the room. I can tell you that this “sixth sense” has gotten stronger since becoming allergic to nuts, as I have not always had reactions to them.

    Lastly, there is a book called Don’t Kill the Birthday girl. Its a book written by a lady who has grown up with severe allergies, one of the most severe being milk! You should check it out.

    Sorry for babbling. I just came across your blog and this post, and a lot of the stuff you wrote about I can give you a personal account of. Good luck at the allergists! Off to read more of your blog.

    Like

    February 7, 2013
    • Hi Sida – It’s great to hear from you. And I totally agree with you, allergy testing is sadly not reliable. Old fashioned food challenges are really the only way to go, but those are so scary to do, especially at home. We learned our lesson the hard way. I’m interested in that book, so thank you for the suggestion! Please feel free to “babble” as much as you’d like. I love to hear from others in the food allergy, eczema, and asthma community. We can all learn from and support one another! Jennifer

      Like

      February 7, 2013
  42. I “liked” your post, but actually it made me so sad. I’m so sorry you and your child had to experience this. I’m so glad you had the Epi Pen and knew when to administer it. I hope the allergist will be able to guide you. It sounds like you’ve done an excellent job of identifying allergens and managing his symptoms.

    My baby is allergic to cow’s milk (even though she’s only been exposed to cheese through the breast milk), so I tried goat’s milk per doctor’s advice. Within moments of drinking it, she had hives all over her face. I tried this two separate days and the results were the same. I won’t be trying it again. I guess you just never know when the next reaction will be the most severe one.

    Like

    February 6, 2013
    • Yes, you’re totally right – you never know when a big reaction is coming. Allergies are such a guessing game and that’s what makes them so frightening. Pretty much any food could cause a reaction any time. We try to understand them, but testing is only mildly accurate. I hope one day we figure out how to avoid food allergies in general, but until then, I wish we could at least improve the testing accuracy. Thank you so much for your support and comments!

      Like

      February 7, 2013
  43. Caitlin #

    Thank you for your honesty and sharing your story. I suffer from food allergies and tested inaccurately. I had both false positives and false negatives on my test. What was worse was when the doctor tried to convince me that there was no way that soy could be causing my problems because I had tested negatively.

    Like

    February 6, 2013
    • Caitlin – Thank you for your comment. There have been a lot of people coming forward in the comments here about receiving negative results to a definite food allergy. So interesting. How did you find out your allergies, through a food challenge of some sort I’m assuming. I hope you were ok. One thing is for sure, you should never have to prove to an allergist that you have an allergy – that is there job to uncover it. I hope you changed allergists. ha!

      Like

      February 7, 2013
      • Caitlin #

        When I went to the allergist, I already had an idea of what I was allergic to through trial and error (the pepper allergy was a surprise though…) I was in college at the time and the dining services needed a doctor confirmation in order to continue my dietary accommodations. When I first went to college, I started having horrible diarrhea (not to be too graphic) multiple times a day. A friend of mine (who has a HUGE allergy list) recognized the signs of a soy allergy so I went on a special soy free diet (the cafeteria used a soy based pan spray in literally every dish in the cafeteria). I started to feel much better, but not 100%. The chef in the cafeteria insisted that if I wanted to continue to receive a special diet, I needed to have testing done.

        I had been in the care of an ENT/allergy center for five years because of my horrible allergies to things like mold and trees and they told me they could go ahead and do the testing for me. I had it done and I had a positive result to black pepper, carrots, and cauliflower. I had a baseline reaction to soy and barley (meaning that my lumps were smaller than the baseline they established by using straight histamine). Because none of my allergies were at a level considered dangerous, she suggested an elimination diet of each of the items. Even after I explained that I had already eliminated soy and was feeling better, she told me it had to be something else. Having received all of the answers I needed, and there being little more that they could do for me for my food allergies, I elected to not return.

        Fast forward a few months as I was doing my elimination diet. I had established that yes, I reacted to soy, but no, I did not react to carrots or cauliflower. I reintroduced pepper at dinner one evening and found chest and arms covered in hives withing ten minutes (funny how we all break out in different places…)

        It really sucks having allergies to things that are in EVERYTHING so I feel for you and your family in the coming years. It doesn’t necessarily get easier, but you do get used to asking the weird questions at every party and restaurant (What did you season this with? Did you make it or did you buy it? Can I see the package? Etc etc etc)

        Like

        February 7, 2013
      • Yes, I can imagine that pepper is an extremely hard one to avoid. It certainly is exhausting to constantly worry about food, so we rarely eat out at restaurants because it’s just so much easier to eat at home.

        Like

        February 8, 2013
  44. vegetarianmamma #

    Thank you for sharing! I have shared this on all my social media outlets! What a powerful story. A story so many of us lived. My youngest son tests negative blood wise for peanuts, and barely positive on the skin test for peanuts. But reacts horribly to them. He’s ana to peanuts and all tree nuts. Thank you for sharing your story! What courage you both had! 🙂 GOOD WORK! 🙂 Cindy

    Like

    February 6, 2013
    • Hi Cindy – Thank you so much for your support and for sharing this with the allergy community. I hope it reaches parents that are unsure of their child’s food allergies. It’s better to act on the side of caution and ask for an EpiPen – you just never know when you may need it. That’s interesting to hear your son test negative to peanuts and reacts so severely as well. I just came across this URL you may find interesting. Take a look at anaphylactoid reactions – maybe this is what is happening to our children. http://www.emsworld.com/article/10324669/anaphylactic-and-anaphylactoid-reactions

      Like

      February 6, 2013
  45. Thank you for taking the time to share your story. I am so glad to hear that all turned out well. You are all so brave, and by showing courage again by sharing your story, I know you’ve helped so many others.

    Like

    February 6, 2013
    • Thank you so much for the kind well wishes and for the support!

      Like

      February 6, 2013
  46. michelle hagan #

    Hi Jen- Thanks for writing this and I am glad to hear that your family is doing well. I have a son with eczema that went undiagnosed that is now linked to many (30) food allergies that I now religiously avoid. I have three children in total with food allergies. I, however, am the one with false negatives to peanuts and tree nuts (negative in both blood and skin tests). I know that I have trouble breathing, get faint, and have severe stomach issues when I eat nuts but was told that I was not allergic based on the testing. So, I stopped watching and ate oriental noodles from the local deli and ended up in the ER. I now believe that I have food allergies despite what the tests show. My allergist said that this is not common but still possible, he thinks that the response could originate in my GI tract, not the blood or skin as they test for. You have to trust your insticts! Stay safe and good thinking on your feet. We have had days as you describe and are fearful of having them again. You aren’t alone, these allergies are so scary!

    Like

    February 6, 2013
    • Hi Michelle – How interesting – the reaction starting in our GI tract. That totally makes sense to me as I believe that many with allergies, eczema, and asthma have issues with a leaky gut to begin with. I’m so sorry you had to go through a similar experience with misdiagnosis. We just have to learn to watch out for ourselves and our children, be our own health advoacates. And definitely like you said, trust our instincts 100%. They are very rarely wrong.

      Like

      February 6, 2013
  47. “Liked” for your forthrightness and the not-quite-happy-but-still-a-relief ending. So glad you knew what to do and that the first responders were able to help.

    Like

    February 6, 2013
    • Hi Jeni – Thank you so much for “liking” the post. Writing about an experience like this one is difficult, but I went with honesty and just laid it all on the line. We are so thankful our little guy is good as new now.

      Like

      February 6, 2013
  48. Andrea #

    Hi Jennifer, so glad wee Tristan is doing OK now. I can empathise with your frightening experience – I well remember the feeling of first time standing with an epipen and the disbelief that I was about to stab my child with what turned out to be such a huge needle! My 10 and 7 year old both have allergies- but the 10 year old tests negative on skin prick and bloods to peanuts but has had two positive in hospital food challenges to peanuts. We were told he was anaphylactoid- different route than anaphylaxis but same end result- I don’t entirely understand it but needless to say would make it hard for us all to decide if/when he should be challenged again. His other allergies and my daughters show up in blood and skin. Hopefully you get sorted soon.
    Stay safe

    Like

    February 6, 2013
    • Hi Andrea – THANK YOU so much for your comment! I have never heard of anaphylactoid reactions before, but how interesting. I just found this “An anaphylactoid reaction doesn’t need the presence of IgE antibodies for a hypersensitivity reaction to occur.” http://www.emsworld.com/article/10324669/anaphylactic-and-anaphylactoid-reactions The anaphylaxis reaction and anaphylactoid reaction are the same, but anaphylactoid doesn’t require the IgE presence….so standard IgE testing wouldn’t detect this type of “allergy.” Wow. I’m going to ask the allergist about this, but you are totally on to something. Thank you again!

      Like

      February 6, 2013
      • Andrea #

        You’re very welcome Jennifer.
        Thanks for link to that article- sheds a wee bit of light on it!
        I will keep a wee eye on your blog to see how it goes
        Andrea

        Like

        February 8, 2013
  49. michelle #

    Also happy to of read your story, we are told that we must do home testing on food that my child has not yet been tested for. As without a positive reaction, they will not do an allergy test on the child for that allergen. My daughter is allergic to nuts, however we suspect seafood, but I fear ever feeding it to her to find out.

    Like

    February 6, 2013
    • Wow, that’s interesting. They told you to do an at home food challenge on a child with known allergies? Do you expect your daughter is allergic to the foods they want you to test at home? If so, then that seems pretty dangerous to me.

      Like

      February 6, 2013
  50. Michael #

    I feel your pain! Had to take our son to the ER after he ate ONE peanut M&M off the floor. He said “MMM chocolate” and my wife knew then and there we were in trouble… All of the same symptoms as your son. Used the epi-pen….and off to the ER for 5 hours. We are constantly looking out for peanuts in our foods. I do miss my peanut butter sandwiches…. but I love my son more. Hope all is well with your little one… our first time was scary also!

    Like

    February 6, 2013
    • Hi Michael –

      Thank you so much for your comment – it’s great to connect with others who have been through the same emergency. Although, I wish no had ever had to go through anaphylaxis. Let’s hope we don’t have to go through another event any time soon, right?

      Like

      February 6, 2013
  51. Teresa #

    Hi Jennifer:

    Thank you for sharing your story. This is something I fear with having a son ana to peanuts and almonds and allergic to dairy, egg, & wheat. Would you mind giving us a follow up after you visit with the allergist? I am curious if his blood test or skin test will show an allergy to feta now that he has had a severe reaction?
    I am so sorry your son had to go through this. It’s so scary. Prayers for you and your family.

    Teresa

    Like

    February 6, 2013
    • Hi Teresa – I wonder the exact same thing. Will the allergy appear in tests. Honestly, I’m doubtful, but we’ll see soon enough. I will surely post a full review after we’ve seen the allergist, who I was expecting to call already, but hasn’t. Hmmm. I’ll need to follow up it seems. Thanks, Teresa.

      Like

      February 6, 2013
  52. My son age 5.5 has had several serious reactions. He was diagnosed with severe allergies to peanut, nut, egg and soy at 18 months. The silver lining is that he is extremely careful about what he eats. He always asks if a food is safe and will even question my husband and I before trying something new. This kind of experience helps the food allergic child learn to handle their own food allergies in a mature and responsible way. In many ways, my 5 year old is more mature than his 11 and 8 year old non allergic brothers! He is in kindergarten now and has been his own best advocate, telling his classmates about his allergies and making sure everyone keeps him safe. We had a lovely moment recently where a child brought in Oreos for a birthday treat because he knew they were safe for my son and this boy didn’t want him to be excluded. He told his mother about my son’s allergies. Severe reactions are awful and scary and we work tirelessly to avoid them but my son reacts to cross contamination and once to proteins on a table so it is hard to be perfect. But, he understands the reality of the situation and that is something you only really get from experiencing a severe reaction.

    Like

    February 6, 2013
    • That’s wonderful and gives me hope for my son. We try to keep the food allergy conversation constantly rolling with him. He is very aware of his allergies and now even more so. I hope it continues as he gets older and he doesn’t try to test the allergies on his own because he feels “different” and wants to be included.

      Like

      February 6, 2013
  53. Your story sound so scary and I am sure it must be. I hope that Tristan is doing much better today. You sounded like you stay very much in control although I can only imagine how frighten you were. My little one’s worst allergic reaction was scratching frantically and being uncomfortable from the itchiness and that was scary enough for me (and I am sure it was tenfold for you with Tristan).

    Like

    February 6, 2013
    • ZJ – I can totally sympathize with the uncontrollable itching as my son suffered from severe eczema. What’s so bad is that it really is relentless and goes on for days and all through the night. So exhausting for the entire family. Thank you for your kind words of support regarding Tristan’s recent attack. It means a lot.

      Like

      February 6, 2013
  54. selenarae #

    Thank you so much for sharing your story. You have a rare and complicated situation, with the negative test results, and this could help someone else avoid the same situation. Food allergies are so complicated, and even doctors make mistakes, so try not to be too hard on yourself, though I know it’s hard, because we want to protect our children from every harm. You did all the right things to treat the reaction and thankfully he is OK, now. (((((HUGS)))))

    Like

    February 6, 2013
    • Thank you Selena! I’ll gladly accept the hugs….they are very much needed.

      Like

      February 6, 2013
  55. nharlow #

    I am not sure if it is the same for food allergies or not, but for my son (who has environmental allergies and allergy induced asthma), the allergist told me that the blood allergy test is only 50% accurate and can show a false positive or a false negative. The skin tests are much more accurate.

    Like

    February 6, 2013
    • Hi Nicole – That’s interesting. I wonder how accurate the skin tests are – he was negative to most things tested that way as well. Thanks for the info! Jennifer

      Like

      February 6, 2013
      • From Dr. Robert Woods book, Food Allergies for Dummies: “Take the results of skin tests with a dose of salt. Overall, up to 60 percent of all positive food skin tests turn out to be incorrect (falsely positive) upon further evaluation. Some studies show that the larger the skin test (the bigger the bump on your skin at the site of the test), the more likely a true allergy is at work, although this has not proven true in other studies.”

        I do feel that skin testing for environmental allergies is more accurate than blood testing (something I’ve been meaning to post about for a year, now, but haven’t gotten around to), but I actually feel that the reverse is true and that blood testing is more accurate for food allergies than skin testing, but again, your sweet son is a case in point that IgE need not be in play, at all, and both skin and blood test have their shortcomings.

        Like

        February 6, 2013
      • Thank you for the information Selena. I wonder what the percentage of accuracy is with the blood test if the skin test is only 60% accurate. I think you’re right about the enviro accuracy with skin testing – I feel the same way. It always picked up correctly on my allergies and we’ll see with Tristan as he’ll have his first seasonal allergy test in one month. His eczema flares up big time in the spring, so I’m curious to see exactly what’s bothering him.

        I always learn so much from you – you are a wealth of food allergy knowledge and I’m so glad you blog about all your experiences and research so anyone with food allergies can learn from you as well.

        Like

        February 7, 2013
  56. I am so so so sorry. What an awful trauma for your whole family. And thank goodness you had the intuition to have an EpiPen–despite the non-dairy-allergy diagnosis. !!!! So glad he’s okay.

    Like

    February 6, 2013
    • Thank you so much, Nell. Yes, everyone is doing much better now.

      Like

      February 6, 2013
  57. Molly #

    I teared up reading your post as I can picture just how scary that was for you to live it, as we’ve had a similar experience. My daughter has anaphylaxis to dairy and it is truly the scariest thing to witness as a mom, not knowing if they’ll be ok. The first time it happened, she was only 6 months old so we had no idea she had food allergies (she was just starting rice cereal which I mixed with formula rather than breastmilk). Within minutes she was vomiting and her whole body was covered in hives. At the time, I assumed her gasping/breathing was just because of the vomiting. Thank God she was ok because we had no Epipen and didn’t know it as anaphylaxis until much later when I started researching allergies. The advice nurse told me to take her to urgent care, where they wrongly assumed it was a carrot allergy because she’d eaten carrots before, but not formula and first exposures couldn’t look like that.

    You were so wise to get the Epipen and then to be willing to use it when needed! When seeing a reaction, I get stuck questioning if it’s bad enough to need it, and then don’t do it. Your story encourages me to just use it if I think I should–thank you! Last year when we were in Disneyland, my daughter started struggling to breathe after eating food that I had prepared at home and packed for her. I wasn’t sure how it would work to call 911 from there (dumb reason) so I hesitated using the Epipen and gave her Benadryl instead. Afterwards, her allergist told me I was lucky and should’ve used it.

    I’m so happy that your son is fine now and I’m glad you’re able to see a pediatric allergist! Hopefully you’ll never have to go through that again! It is so scary to think that allergy testing can have that many false negatives!

    Like

    February 6, 2013
    • Thank you so much for your words of support, Molly. Yes, as you are well aware, anaphylaxis is a scary thing to witness and horrifying when it’s your child. I’m happy for you that yo haven’t need the EpiPen, but as you said, definitely don’t be afraid to use it. I believe when the reaction is as serious as anaphylaxis, you may only have a small window of time to help your child by administering the epinephrine. So, we have to take full advantage of that time. I still second guessed myself after giving it to my son, but the paramedic quickly clarified how much he needed it. Before you go to Disney next time, take a look at this amazing website dedicated to all traveling to Disney with food allergies. http://www.allergyfreemouse.com/ I’m sure it will give you some much needed reassurance for a safe trip. Thank you so much again for sharing your story and sending well wishes to our family. Jennifer

      Like

      February 6, 2013
  58. Heather G. #

    My son is allergic to dairy but did not test positive. He has never had anaphylaxis but he has had hives and air way reaction from it.

    Like

    February 5, 2013
    • Hi Heather – Thank you for sharing. It’s interesting to know your son also tests negative. I’d love to know why allergy testing does not detect our children’s allergies. It’s just so strange.

      Like

      February 5, 2013
  59. Great job remaining calm and using the epi! I had eaten peanut butter almost every day until March 16th of last year and then suddenly it start causing anaphylactic reactions. Some of my allergens always show negative on skin and blood testing.

    Like

    February 5, 2013
    • Wow, so scary to develop a reaction after years of consuming a food. So interesting though. Allergies are such a mystery!

      Like

      February 5, 2013
  60. Ooh, I feel for you. What a horrid experience. I hope Tristan is feeling well today. We have epi-pens but have never used them (luckily) – yet. Your story has touched me….. X

    Like

    February 5, 2013
    • Thank you so much for such kind words. I hope that you don’t ever have to use your EpiPens either! But if you do, don’t hesitate. Tristan is doing great now, so we are beyond thankful.

      Like

      February 5, 2013
  61. Hi Jennifer,
    Sounds like a terrifying experience. I have been involved in allergy and immunology for almost 30 years, and one point I want to pass along that few doctors are aware is that for 35% of reactions, a second dose of epinephrine is needed after 15 minutes. I don’t mean to scare you, but it is always good to have 2. Anaphylaxis Canada is a great resource, and they have another site geared toward children and teens. http://www.anaphylaxis.org/

    Kind regards,
    Dan Sharp
    Western Allergy Services

    Like

    February 5, 2013
    • Hi Dan – We actually have four EpiPens on hand at home. Two sets in different locations – one set is always with Tristan. I didn’t realize that a second dose was often necessary. I thought the second EpiPen was more in case the first one didn’t work for some reason. Really great to know about the necessity of a second dose in many cases. Thank you.

      Like

      February 5, 2013
      • Thank you, Dan, for pointing that out, and Jennifer, for explaining why you thought the second dose was provided. This tells me that I really need to be clear when explaining to others about why the second dose is available. When I explain to people why they should always carry two devices, the “possible malfunction” scenario is the least of the concerns, and it’s mainly because the person might not respond fully to the first dose and could need another dose before help arrives. I’ve read you can even administer as quickly as 5-10 minutes after the first dose, if they are not responding.

        Like

        February 6, 2013
      • Selena – I really had no idea more than one dose would be necessary. A great lesson indeed! Let me know if you post about that – I’ll definitely want to share it.

        Like

        February 6, 2013
  62. Pam #

    Thank you so much for sharing your story.

    Like

    February 5, 2013
  63. Erin #

    This made me cry. We just found out that my son has Celiac Disease and now seems to have some reactions to dairy, which I know can be related. I honestly had no idea that dairy could cause this kind of a reaction. I always just assumed it was nuts or shellfish that could cause anaphylaxis. It is so hard to get people to understand the seriousness of allergies, intolerance, etc., especially if they themselves are not directly affected by them or their kids are not affected. We have to go back and see his doctor in a few months and I am going to ask that he be allergy tested again to see if he is now allergic to dairy products or anything else for that matter. We had to push to get him tested for Celiac as we were told that his symptoms were probably just a dairy intolerance and to just go without it for six months and see if he improved. Thankfully we didn’t listen as we would still be damaging his body with gluten. Thank goodness for a mother’s intuition. Thank you for sharing your story and asking that we do the same. It gives me hope that when people read things such as this they will realize that this is a very serious matter and we are not being over protective or trying to inconvenience them with our list of things to be avoided when our children our in their care. We are trying to enable them to help us protect our children. I can totally relate when you said, “I wanted him to out grow them with all my heart – wasn’t wanting that and believing that with all my heart enough to make it true?.” Aside from the Celiac I hope that that is the only thing that my son has to deal with and everything else will go away in time. That’s what we do. We hope for nothing but the best, the easiest path for our little ones. Your children are lucky to have such wonderful parents. You guys did an amazing job. Hugs to you all!!

    Like

    February 5, 2013
    • Thank you, Erin. Such wonderful things to say – I really appreciate it all. Reading your comment brought tears to my eyes because it’s so touching connecting with parents in similar situations. We all lean on one another for support and just want to help each other. I’m so glad that my story may have helped you see the potential dangers with dairy allergies and I certainly hope that your daughter never has to experience any sort of allergic reaction. Just remember that testing is important, but it’s not always reliable. Use your intuition as you have been. And continue to be an strong, supportive mom for your son.

      Like

      February 5, 2013
  64. Jennifer – Great job using the epipen and thanks for sharing your story! I am sure writing your post was both difficult and a relief all at the same time. My wife and I had a similar situation but hesitated to use the epipen when we definitely should have. Thankfully, we got to the hospital in time and everything worked out okay in our situation, but the lesson that parents/caregivers shouldn’t hesitate to use the epi is really important to get out there. You don’t realize how terrifying it is until you go through it! Be safe!

    Like

    February 5, 2013
    • Hi Justin –

      Yes, you’re definitely right, it is terrifying. While I did use the EpiPen, I certainly hesitated. I’m not sure why the hesitation – perhaps it’s the fact that we’re so used to injections being handled by medical professionals, or do we not want to hurt our child, or perhaps we’re not sure if it’s really necessary.

      Like

      February 5, 2013
  65. Nalana #

    My dad has this reaction with any food containing MSG.

    Like

    February 5, 2013
    • Oh no – very frightening as it’s a really hidden ingredient and much of the foods at restaurants.

      Like

      February 5, 2013
  66. itsotay #

    Thanks for sharing this story…it’s making the rounds on Facebook now, if you didn’t know. 🙂

    I think this story underscores the importance of knowing the epipen protocols for paramedics in your (not you, specifically, but all allergy parents) local area. Where I live, not all levels of paramedic can/will administer epipen. Important to know so you can ask for the right emergency services.

    Glad your son is safe! Great job stepping up when you needed to.

    Like

    February 5, 2013
    • Hi – Oh gosh, FB rounds – I wasn’t expecting that. Well, as long as it can help other parents who are unclear on their children’s food allergies or even those with sensitivities and intolerances, as I truly believe that’s how my son’s allergies started. They were so mild before and they don’t show up in blood tests. It will be so interesting to talk with the allergist. Great point about discussing what paramedidics are authorized to do. Would you be interested in writing a guest post about this topic perhaps? I never second guessed if they’d be able to give him another injection. In fact, I never realized he’d possibly need more than one injection at all. Again, would have been helpful to have had an allergist working with us from day one. Thank you so much for your comment – very helpful and food for thought. Would you be interested in writing a guest post about this topic perhaps?

      Like

      February 5, 2013
      • itsotay #

        As much as I prattle on in my allergy groups, I’ve never thought much about doing an actual blog post. I’ll see if I can find some good info…I’ve got quite a collection of links from the first 2 years of our allergy life where I pretty much attached myself to the Internet reading everything I could find about allergy managment! 😉

        I’ll message you if I can put a post together.

        Like

        February 5, 2013
      • That would be great! I’d be honored to feature a guest post from you. I hope to hear from you soon. My email is jennifer@eczemacompany.com Thanks!

        Like

        February 5, 2013
  67. Jennifer-
    I am so glad to hear that everyone is fine! Kudos that you wrote this because we had a close call and I came very close to using the Epipen but did not. Your story also solidifies the fact that people should ALWAYS have a twin pack- just in case! Thank you for sharing this with us- people need these true facts so that fear is not an issue, just knowledge. Give him extra hugs (and yourself too!).

    Like

    February 5, 2013
    • Thank you, Tracy! Ugh, I was so confident I’d never need to use epinephrine, and was in such shock when this all went down. I couldn’t believe it was happening. I know you know the feeling, since you came close. We had a pretty close call before too with spelt flour – it was definitely border line. Thank you for the hugs – definitely needed right now 🙂

      Like

      February 5, 2013
  68. Oh, Jennifer, what an horrifying experience! I can understand so much of it, & am so sorry you went through it. Allergy testing seems like such a pain sometimes- but I’m also grateful Ry has always been tested every six months. Have you guys heard about the patch test? I’d strongly recommend it! It tests for IgG reactions, typically put on Monday, taking off wednesday with first results read & then final results read Thursday. We actually rarely do blood test, our allergist has always told us its very unreliable & usually doesn’t find much (don’t know how accurate that is, but it’s always interesting to hear the different perspectives of allergists). I hope you guys get some good help with your new allergist!!

    Like

    February 5, 2013
    • Hi Breanna – I’m really curious about the patch test. Can you email me more details? Sounds really interesting. However, I know most conventional doctors frown on IgG and say it doesn’t give any clear info, just as the natural doctors don’t always agree with conventional IgE blood tests. I wish they could all just get along. LOL. We are trying to get some IgG testing down with our integrated doctor, so I’ll ask him about the patch testing. Thanks so much for your support, Breanna! We made your mango cake the other day – yum! I especially loved the frosting as the mango was strongest. We used arrowroot powder to make the powdered sugar.

      Like

      February 5, 2013
  69. Tears in my eyes reading this. So glad you were prepared!

    Like

    February 5, 2013
    • I know me too – I teared up writing this post and rereading it multiple times. I’m a bit of a mess these past few days, but working through it. Yes, I’m so relieved we were prepared as well.

      Like

      February 5, 2013
  70. Thanks for sharing your experience. I’ve had to give the epi pen too, and it took me and my kids a few weeks to get over the PTSD/Trauma of the experience. I feel for you.

    A couple of things I’ve learned as a food allergy mom, which I’m sure your new allergist will echo – 1. you need to be exposed to an allergen at least once before the body will register as allergic. It can be through breastmilk or even minute amounts in a grocery cart (thinking peanuts here) but the first time the body eats something, it is generally fine, but the 2nd or 3rd time might be when the reaction happens.

    2. each reaction is different and you can’t count on the next reaction being the same as this one. it could be less or more severe – but some people think “I don’t need the epi because I only get itchy lips” but next time it could involve breathing.

    3. it’s always better to give epi than not – and you did EXACTLY the right thing in the situation.

    I know it’s hard to swallow, but you will get through this and I promise you that you’ll start to feel better about the whole thing in a few weeks. xo

    Like

    February 5, 2013
    • Thank you so much, Missy! You know, I hadn’t really considered the PTSD side of things, but it definitely makes sense and I can see it affecting me at least a little, as well as my son. I’ve been a little more emotional lately, especially around Tristan. And I’ve always thought my son was cute, but I think he’s the most gorgeous child that ever walked the earth, the past few days. I wasn’t sure it was affecting him, but he hasn’t really wanted to talk about that night yet. So, I guess he’s not ready to relive the whole thing just yet.

      Also, regarding the second exposure triggering an allergic reaction – I’m not new to food allergies, but I think I completely goofed up. I’m not sure he’s ever had sheep’s milk of any sort. We know cow’s milks products trigger a reaction, but so far not anaphylaxis. I didn’t even think about the fact that the feta was from sheep’s milk. I gave him to him thinking dairy, not sheep. Man, this is interesting. I wonder if it’s the fact that it’s from sheep and not just that it was dairy in general, that really caused him to react so severely. Something to think about for sure. Thanks for bringing this up.

      Like

      February 5, 2013
      • Selena Bluntzer #

        Even though you need to be exposed somehow to become sensitized, the proteins in some animal milks are so close that the body can easily mistake them, apparently, because my daughter never had goat’s milk yogurt in her life, but threw up violently, the very first time she had it. I never ate it in my life, so there was no BM exposure or skin exposure from contact either. Give her anaphylaxis to cow’s milk, all closely related animal milks (well, pretty much all animal milks, for now) are off limits.

        Like

        March 31, 2013
  71. Kristi #

    Hugs! It sucks that we have to deal with this. My son has lots of food allergies and I had to use the Epi pen last summer after he ate some candy that had egg in it. I was so scared to use the Epi, but now I will use it in a heartbeat because it is really that easy! Even my son said it didn’t really hurt after I stabbed his leg:) I’m glad your son will receive care from an allergist. We love ours! Allergies really are crazy. My son was able to eat shelled sunflower seeds during the summers but had a violent reaction to Sunbutter one day. So scary!

    Like

    February 5, 2013
    • It really does stink, but at least we have tools to manage it and it’s treatable. So many families deal with much worse, so we have learned to be grateful. Allergies are so confusing – really strange that sunflower seeds were ok one day and then Sunbutter triggered a reaction. They just don’t make sense, makes all this so much harder, doesn’t it?

      Like

      February 5, 2013
  72. I am so very glad that you asked Tristan’s pediatrician for an EpiPen! You and your husband saved his life by arming yourselves with the knowledge, medication and quickness to act.

    One thing that I was not initially prepared for was the potential for an anaphylactic reaction to become protracted. If you have not already scheduled a follow up appointment to have Tristan looked at today or tomorrow, please do. He may need further medication today to deal with any lasting effects.

    Like

    February 5, 2013
    • Kendra – thanks for the tip! What kind of lasting effects do you mean? Now I’m worried…..we’re watching him carefully and he stayed home all day yesterday. So far he’s fine. We do have more epinephrine and asthma medication on hand if we need it. Hopefully we won’t!

      Like

      February 5, 2013
      • Any of the symptoms that you have already seen could persist at a lower level for a few days. It is also possible to have a second peak of symptoms that are severe, though when that happens it is typically within a few hours of the initial emergency. In our family, we have seen swelling, hives and shortness of breath continue at a lower level once the most severe symptoms have resolved. My husband still had significant swelling of his throat and uvula after his worst reaction. We very often end up with a few days of steroids to treat continuing inflammation once the emergent symptoms have resolved.

        Like

        February 5, 2013
      • Ok, got it – I will be on the watch. I hadn’t heard much about the lasting affects before, so this is very helpful. He seems ok so far, but it’s better to be on the watch than to assume we’re in the clear. He did receive some oral steroids at the hospital, so I’m assuming that’s helping.

        Like

        February 5, 2013
  73. Wow, I had tears in my eyes reading this, how scary for you!!!! I have seen my mom’s face when I’m having an anaphylactic reaction and it’s almost worse for her than it is for me. I am so glad that he is okay and that you and your husband worked so well under pressure! It’s good to know!

    Also, yay for blessings in disguist! That is going to be great to work with the pediatric allergist. How mystifying that he is so allergic to dairy but his tests showed negative. It makes sense to me though. Sometimes my allergy tests show I’m allergic to 98% of everything they test me for. beef, chicken, rice, vegetables, fruits…EVERYTHING! Then other times it’s different. SO incredibly frustrating.

    Again, I’m so thankful that your son is okay. I’m sure he’s getting smothered in extra kisses and hugs from you and your husband today!!

    PS Your intuition is amazing, thank God you followed it. The fact that you got yourself an epi-pen even when the doctors didn’t feel you needed it. UGH. GO you! 🙂

    Like

    February 5, 2013
    • Thank you so much Courtney – I can totally sympathize with your mom – it’s heart breaking to see your child suffer in any way, let alone go through anaphylaxis, not know when it will end and that everything will be ok. We are certainly thankful and are counting our blessings, although we were surprised to find quite a few positive outcomes from this terrible experience. That’s really interesting that your allergy tests vary so much – so sad that testing isn’t more accurate. Think of the lives that could be saved!

      Like

      February 5, 2013
  74. Amanda #

    Thanks for sharing your experience. This must have been so terrifying! It’s a good thing you had the Epi-pen in spite of him not having tested positive for food allergies before.

    Like

    February 5, 2013
    • Yes, I think it’s mother’s intuition that had me asking for that Epi prescription…thank goodness I listen to it. For me it didn’t come naturally, but I’ve learned to listen to listen to my intuition with all that Tristan has been through – eczema, allergy, and asthma wise.

      Like

      February 5, 2013
  75. The Allergista #

    oh my gosh….. how terrifying for you!!!! I was trying not to cry just reading this….. You are SO brave and SO smart for having that on hand. Wow….. how can allergy tests be so inaccurate??? That’s so scary…. HUGS to you, your son and your husband!

    Like

    February 5, 2013
    • Thank you so much – yes, it was terrible. I am so thankful it’s over, we’ve learned from it and can move on. Thank you so much for you support and thoughtful message – it means a lot!

      Like

      February 5, 2013
      • The Allergista #

        🙂

        Like

        February 5, 2013
  76. I have 3 daughters, plus myself, who do not test allergic to our allergens either. One time, my 3rd daughter had a skin test for pears, it came back negative. She accidentally licked her arm (she was 3), and went into anaphylaxis. The allergic was shocked! I will say a prayer for your little boy, and for you. Using the epi-pen is the hardest thing I have ever done as a parent.

    Like

    February 5, 2013
    • Angi – That’s so interesting. I don’t run across many people who say they had negative results, but then went on to experience anaphylaxis. Did your allergist give you and reason as to why that would happen? I’m certainly glad you prepared with epinephrine and were able to be there for your daughter.

      Like

      February 5, 2013
  77. I am so very sorry you had to go through that, but glad you learned some things and that he will be able to see an allergist! I went through a food challenge myself with a great allergist because of conflicting results I had had via blood and skin tests. It turned out I did not have food allergies, to which I am grateful! I do have food sensitivities, but the allergies are not there. I have 2 kids with a form of ecsema, and I have considered having them see an allergist at some point. My son’s allergies, so far, have been limited to mold and the ecsema does not bother him, and the doctor thinks it’s more dry skin related than allergy related (moisturizers do help) especially since he’s shown no reaction to foods period, though he is functionally hypoglycemic. Anyway, my daughter is not showing reactions to food either, her skin doesn’t seem to bother her, and responds well to moisturizers, too. I pray that if there is a food trigger, we will find it so we don’t have to learn the hard way. I also pray they will grow out of it, so I understand your heart in this completely! I also pray for a doctor to listen and get my kiddos to a proper allergist or even skin doctor who can help me properly identify the cause of their skin issues so I don’t have to guess and check on my own, if you know what I mean! You and yours are in my prayers!

    Like

    February 5, 2013
    • Thank you so much Julie! I’m very happy for you that you don’t have to manage food allergies, and I hope it stays that way. With eczema it’s certainly possible your kid’s do have some form of a food sensitivity. Tristan didn’t start out with these severe reactions. He was eating these foods he’s allergic to everyday, but he had severe eczema. One we removed those foods from his diet, his skin cleared up, but now it seems he’s developing stronger reactions to those foods. I hope you can determine your children’s eczema triggers, it’s such a sense of relief once you do! Good luck!

      Like

      February 5, 2013
      • I will definitely keep that in mind! I will talk with the doctor about it their next well-child, if not sooner, and see what the next course of action is. I’m thinking a dermatologist would probably be the way he sends us because of the lack of obvious food allergies, and that would be ok. I just don’t want to have to go through elimination diets on my own, though I’m not opposed to that either. We’ll see how things go! I’m not a shy mom in terms of my kiddos health, so I will be asking LOTS of questions for sure! 🙂

        Like

        February 5, 2013
      • Good! Because you are your child’s health advocate – follow your instincts and you’ll surely get to the bottom of it. Good luck with your appt!!!

        Like

        February 5, 2013
      • Thanks! 🙂

        Like

        February 5, 2013
  78. Annie Boisvert #

    Jennifer – Thank you SO MUCH for posting this. I can’t put into words how much I relate to your experience with Tristan… Having seen my own little boy react in the same way, reading your account of the anaphylactic episode brings back very vivid memories that I try very hard not to think about too often, during the day, when my son is in someone else’s care… I will definitely share this post with eveyrbody I know, especially people I know work or live with children suffering from food allergies. You did an awesome job, reacting to Tristan’s anaphylactic episode, and I am CONVINCED he will never forget you once saved his life. xxx

    Like

    February 5, 2013
    • Thanks Annie – but you know how it is, I feel so guilty. It’s that terrible mother’s guilt that is just unavoidable. As time passes the guilt will subside, but I know I shouldn’t have taken the chance in giving Tristan cheese the first time, let alone the second time. Anyway, I’m so thankful he’s ok and so is your son. We just have to place our complete faith in the caregivers we select for our children. Often times they’ve been through experiences like this, or are at least trained to anticipate reactions, so they may be more prepared in many ways than us. Looking forward to seeing you next week!

      Like

      February 5, 2013
  79. Dana #

    Hi, Jen! I know you hated to relive Tristan’s experience, but am SO glad you were willing to share. I have severe food allergies and to put it lightly play roulette with it all the time. I think what harm can it do, it only causes hives. However, reading this will cause me to reassess foods ingested, especially those I’m allergic too. Most importantly, glad Tristan is ok!!

    Like

    February 5, 2013
    • Dana – So good to hear from you! I had no idea you have food allergies as well. I’m glad that this post opened your eyes to what can happen – allergies can change at the drop of a hat and are just so stubbornly unpredictable. I hope you have an Epi-Pen on you at all times at least. Please be careful for yourself and for Ben!

      Like

      February 5, 2013
  80. Eileen #

    Wow – Jennifer – scary stuff! I am so relieved for you that Tristan is ok. Good for you and your husband acting so quickly! Keep us posted, how it goes with the allergist, please!

    Like

    February 5, 2013
    • Hi Eileen – yes, I certainly will keep you posted, as always. Thanks for your support!

      Like

      February 5, 2013
  81. Oh my goodness, poor Tristan! That had to be absolutely horrifying for both you and him! Thank goodness that you knew exactly what to do and you were able to get him help ASAP. That is so weird that he could eat the food one time and be okay, and then this reaction occurs – I’ll be curious to hear your experiences with the allergist. The food allergy testing is so mind boggling, I don’t understand how he would have tested negative and then had such a violent reaction! Part of me has always wanted to get food tested for my eczema as well, but with stories like this, it makes me feel it would be inconclusive. Anyway, I hope Tristan is feeling and looking back to normal, sending healing thoughts his way!

    Like

    February 5, 2013
    • Thank you so much. It was just an awful thing to experience, but there was a great team of paramedics and doctors that made it go as smoothly as this type of emergency can go. I am just grateful he is doing so well now.

      Like

      February 5, 2013

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