Skip to content

After an Anaphylactic Reaction – The Road to Recovery

It’s been just over two weeks since Tristan’s first anaphylactic reaction. Since then I’ve realized a few things and learned even more from all the supportive comments and words of encouragement from all of you (which I am extremely grateful for! Thank you!).

1) False negatives with food allergy tests are more common than you’d think. There are tons of people out there, who like Tristan, react negatively in food allergy tests, but indeed have food allergies. I was really surprised by how many of you commented that you’d received false negative results as well. Incredible! Why isn’t allergy testing more accurate?!!! Think of the children and adults going misdiagnosed (false negatives and false positives)! Grrr!! I wish in-clinic food challenges were more supported by physicians – it’s not called the Gold Standard in allergy diagnosis for nothing.

2) It takes some time to recover emotionally and physically from an anaphylactic episode. For at least one week I kept having flash backs to that night. I’d relive certain moments in my head, but the worst was visualizing (again and again) my son – swollen, blue, covered in hives, and unable to get enough air. I’m sure I will never, ever completely be free of those horrifying images. I’ve been hugging my son a little tighter and looking at him more appreciatively lately, thankful that I still have him in my life.

It’s also common to have additional allergic reactions, although usually on a smaller scale, after anaphylaxis. We’re lucky this didn’t happen with Tristan, but he did experience pain in his thigh and butt in the area where the epinephrine was injected. The soreness was the worst just under one week later, walking was quite painful for him.

3) It’s not always easy to talk about it. Tristan (just about to turn five-years-old) does not want to talk about his anaphylaxis. In fact, he tells me exactly that when I try to get him to open up about what happened. I did want to make sure he didn’t blame himself in any way for his allergic reaction, so I asked him and he assured me he knew it wasn’t his fault, but that it was my fault. Oh. Well. Yes, he was right. He said it in a way that wasn’t blaming me, but more simply that I was responsible. So, we talked about that (for as long as he would, which was not long) as I wanted him to know, without a shadow of a doubt, that mama did NOT know he was going to react that way. If I did I would have NEVER given him that cheese. He seemed to really understand and agree. Phew.

If you have trouble getting your children to open up about their food allergies or anaphylactic reaction, here are some great tips from Natalie, who suffers from multiple food allergies and has experienced anaphylaxis many times. Natalie writes about food allergies via her blog at Behind the Reaction.

  • Try to get them talking while doing something they enjoy. Turn what your child likes doing into an opportunity to open up and talk about it. For instance, if he likes anything artsy, try drawing with him. Try drawing the ambulance or the hospital and prompt your child in that way. If the child is really into trucks you could set up a time and go by your local fire station and they can show him their trucks and how they know when they need to go help someone, etc. You could give them a heads up about what had happened and have them talk to your child about how brave he was. It may be really exciting for your child and provide them with the opportunity to talk about how brave he was even though it was scary!

I followed Natalie’s advice and took Tristan to visit the firemen who came to our house as first responders on the night of his anaphylactic reaction. I called ahead to the station to find out when the men who were on call that night would be available for us to meet with them. Tristan and I baked them cookies (allergy-free of course!) and took a little tour of the fire station.

IMG_4380

visitig our heroes

  • Connect with other with food allergies. Another idea is to find someone in the area who has gone through the same thing. I know in our area there are different support groups for food allergies and if you are able to find one you could find a food allergy buddy. FAAN has a list of support groups here and Kids with Food Allergies has a wonderful online support system. It’s a great way for parents to get together and discuss the stresses of managing food allergies as well. Often times I wish there was more of a community and connection between the kids though. I still get frustrated when people try to relate to me after a reaction because they don’t know what it feels like. The feelings during a reaction are hard to explain and overwhelming!  If you can find someone for him to relate to it may really help.

After Tristan’s reaction, I started reaching out to other parents in our area to start a play group for kid’s with food allergies. It will be a sort of support group for the parents and a great way for kids with food allergies to connect with other children going through the same thing. I cannot wait for our first meet-up!

  • Give them time to heal. Parents process allergic reactions much differently than children do, so be careful of how frequently you bring up the experience with your children. With food allergies it is such a fine line with the amount of information you give to children. Of course as they grow up, you want them to know that food allergies are extremely serious and can make them very, very sick, but you certainly don’t want them to fear eating.

I completely agree with Natalie about not wanting our children to live in fear of eating. Thankfully my little guy is quite the foodie already, but I know fears can manifest at the drop of the hat, so his eating habits are something I will keep a close eye on. I want him to be well aware of his food restrictions, but I certainly don’t want him to develop any eating disorders or anxieties about food. And I don’t ever want him to feel left out because of his food allergies. Definitely a tough balance and one that will take lots of practice.

How was your or your child’s recovery from anaphylaxis? What helped you get through the emotional and physical aspects?

37 Comments Post a comment
  1. My daughter got a blood test for peanut allergy, after two scarey reactions. Its negative, now she is reacting to peanut dust (coughing and eyes watering along with a look of fear ) Seems to be getting more severe this past week. Waiting for the dr to call back and let me know if there will be a food challenge test. Because she also has Down syndrome I am not sure if her throat is being affected. Its scarey……..

    Like

    March 21, 2014
    • That is scary. Did they do a blood or skin test? How old is your daughter?

      Like

      March 21, 2014
      • Blood test only, she is 11, the rn told me on the phone I can choose to not give her peanuts! I asked for a food challenge test

        Like

        March 31, 2014
      • That’s great you demanded a challenge!

        Like

        April 4, 2014
  2. Reblogged this on Downs-ipedia and commented:
    Ezcema- and peanut allergy

    Like

    March 21, 2014
  3. Whitney #

    I know this response comes a year too late but I just happened upon this blog while in search of support for my own anaphylaxis. I have severe reactions (vomiting, diarrhea, hives, low blood pressure and rapid heart rate) to shellfish and wheat. Wheat is the strange one for me as some days I could eat it with no symptoms at all and then suddenly I would get a full blown reaction out of nowhere. Wheat doesn’t always show up on my allergy skin tests but I no longer take chances. I am a 26 yr old woman, my first severe reaction happened around age 13 and I still suffer from PTSD as well as agoraphobia from this. I used to love travel and going out to eat but I have become so fearful of another reaction that I just don’t want to leave home or eat anything that I haven’t cooked myself. How does one get over the fear of possible sudden, painful, humiliating death? I don’t know. Please keep trying to get your son to open up about his allergies and find him support groups, as the anxiety worsens with age as the brain develops and comes to understand exactly what happened and could happen again.

    Like

    March 20, 2014
    • Thank you for your comment. My son I’d thankfully on the verge of outgrowing his allergies, but support groups are a good idea of course. I am sorry to hear about your unpredictable allergies. I have heard that there are many version of wheat on the market. Many have been modified. I wonder how you do with farm fresh, non GMO wheat that is not processed in any way. Have you tried this?

      Like

      March 20, 2014
  4. Mars Q. 670 #

    My son had is also anaphylactic to peanut and I can feel what you all been going through…it is really hard and it is really stressful and giving you anxiety after the incident happens. My only advise is first educate your son to know his food allergy, buy books that tells story about food allergy, always carry epipen whenever or wherever you go. put signs in your car or your door, your rules before leaving the house so you won’t forget fo remind yourself or even the people around him that your son have a food allergy….I have 2 child and everytime their with me my mind is always divided to each of them and sometimes when our kids is getting naughty we forget things that we were not supposed to….like reading the labels, reminding his playmates, even wearing his bracelet…so it is always good that you have signs everywhere jst for you.

    Like

    February 24, 2013
    • All great ideas! Thank you so much for the advice. We talk about Tristan’s allergies all the time, but I’m not sure he’d be able to identify some of them, like the specific nuts. This is something we really need to work on. Thanks!

      Like

      February 25, 2013
      • Crystal Breier #

        Thank you so much for your post. I have off and on thought I might be crazy. My sons and I have had repeat anaphylactic reactions to allergens (fish, shellfish, dairy–throat closing up, hives, stomach issues etc) and had all negative allergy prick tests to these (but positive to others). The allergist tested a slew of other things and told me I was probably not allergic fish, shellfish and, it may have been something else, and did not give me an epipen. I thought maybe I was crazy, could I be imagining this? But after talking to my primary care, she said I should have one. Since then I have accidentally eaten these foods several times and had worsening reactions. The allergist finally admitted that sometimes the tests don’t work. WHY DON’T THEY TELL US THIS RIGHT ALONG- someone could die and they could be sued? After bringing my infant for testing today and having one test show up positive, but not others, and saying I didn’t believe it because I’ve done home tests w/these foods (he vomits each time I eat a trace of them), the new allergist told me that indeed, not all allergens show up on a prick test, especially if the reaction is elsewhere then the skin, or if its a food sensitivity, or there are multiple proteins that can be causing the issue. Also why is IgG testing (food sensitivity) not more common, its an immune response, right?

        Like

        September 17, 2013
      • Hi Crystal – It’s maddening, isn’t it? With the blood and skin tests, another thing to remember is that some labs are better than others apparently and some foods are easier to test for than others. This is why a history of reactions and a food challenge is often extremely important and it is not recommended to go on allergy test results alone. Good for you for sticking to your guns, knowing what did cause severe reactions for you and your sons. And wonderful that you have epinephrine on hand now – you just never know…. Jennifer

        Like

        September 18, 2013
  5. Anne #

    My son (age 3 and diagnosed with FA and prescribed an Epi Pen) had his first anaphylactic reaction several weeks ago. I too mistook it for asthma at first (it was at home, eating “safe” food!) before I clued in, did the epi-pen and then called 911. I have come away from the experience with greater knowledge of what anaphylaxis looks like in the beginning, but also a worry that another caregiver or school might really miss the early signs, if even I as a parents nearly did. He has never been in anyone else’s care and as we look at potential schools, we have rejected our city’s public schools as just too large and overworked to have the capacity to ensure the safety of FA kids. Now visiting private schools.

    I would also like to echo the dog comment: my son was first diagnosed with his PA at age 1 because he was licked by a dog that had eaten peanut butter, which gave my son massive hives. So although there is no “dog allergy”, we never ever let dogs lick. There are other discussions, websites that discuss all the nuts,,seeds and other allergens from dog food that can land a FA kid in the ER.

    Like

    February 22, 2013
    • Hi Anne –

      Thankfully you were armed with the right medication and were able to give your son what he needed during the attack. And very interesting on the “dog allergy” that really ended up being a peanut allergy. I would never have made that connection. Jennifer

      Like

      February 25, 2013
  6. So close to home. My son was 10 at the time of his first reaction. We were still in the process of working with doctors and did not know what the food allergen was. For some reason the tests did not reveal the exact type of food allergen. And more importantly we did not have a prescription for the Epi Pen yet. All we had was Benadryl. That did not work. It was so scary. To this day, I have not forgotten that event. My son is now 16 and is allergic to sesame seeds. You have no idea how many products have sesame or crushed sesame seeds in the product. He carries both Benadryl and an Epi Pen where ever he goes.

    Like

    February 22, 2013
    • Oh how frightening! To go through that without the proper medicine! At least now you know – sad that testing wasn’t able to give you accurate results, but I’m hearing this is quite common, which very much saddens me.

      Like

      February 25, 2013
  7. My oldest son used his epi pen for the VERY FIRST TIME the second week he was away at college. We had been carrying those epi pens around for over 10 years! Thank god he remembered all the training, and he injected himself and called the ambulance. After the ordeal was over, he was having anxiety everytime he ate something. It took a good month for him to feel back to ‘normal’. Its very hard to watch them go thru the whole experience, no matter what age they are (he is 19).

    Like

    February 22, 2013
    • Wow, you really taught him well then! Bravo! I’m sure that was so stressful for him afterwards – and you, I cannot imagine. Since he had moved away. Man, the thought of Tristan living out of the house is so frightening at this point. Luckily, we have 14 or so years to get him properly educated about taking control over his allergies before he leaves this nest :) I’m so relieved for you that your son can take such good care of his body!

      Like

      February 22, 2013
  8. Oops, sorry, a link would probably help:
    http://allergyfun.blogspot.com.au/2011_10_01_archive.html

    Like

    February 20, 2013
  9. What a great idea to go and visit the fire station with your son. I was looking back at what happened when our son had his first anaphylactic reaction – I thought you might be interested in some of the added precautions we’ve since taken, in order to be better prepared (should it ever happen again). I hope it gives you some ideas.

    Time will help greatly in you and your son’s recovery… but don’t be afraid to seek counselling, especially if he does not recover as you think he should. Children are remarkably resilient, but our little ones have an additional burden, so sometimes they need that additional help :-) As do we!

    Like

    February 20, 2013
    • Great post! Very helpful ideas for a hospital emergency bag. Thanks!

      Like

      February 21, 2013
  10. What a great, helpful article!

    My little boy was 20 months old when he had an anaphylactic reaction to a peanut butter cookie, so we didn’t go through quite the same things as you have with trying to get him to talk about it etc. Your post has just brought it back to me though, about my son’s reactions to ambulances after he came out of hospital. He would suddenly start crying, arching his back, kicking his legs in his buggy, for no apparent reason. I would wonder what was the matter and then see an ambulance further down the road, which he had spotted before me. That lasted probably 2-3 weeks. The other thing we experienced was that (after having spent a week in hospital – first on a busy intensive care ward, then in a room with his dad) he was suddenly terrified of sleeping in his room by himself at night. After a few nights of zero sleep (his little sister was also 5 weeks old at the time), we ended up having to be supernanny-style stern with him – which was extremely hard to do, after what he had been through.

    Absolutely agree about the time it takes to recover emotionally. I also think starting a food allergies playgroup sounds like a brilliant idea – I’m inspired!

    Thanks very much for sharing – and glad your little boy is doing so well now!

    Like

    February 20, 2013
    • Hi Louise – Thanks! That’s really interesting how your son reacted at two years old. It makes complete sense, poor little guy. How wonderful that he’s past all that now – you helped him move on, being strict is what he needed from you. Good luck with the play group – I hope you find a great group of food allergy families to connect with. And yes, Tristan is much better. Still doesn’t want to talk about it, but from what I can tell, he’s very aware of his allergies at all times.

      Like

      February 21, 2013
  11. So glad to hear he is okay! My last anaphylactic reaction was in December and I can understand what he is going through. It took me a little while to physically and emotionally heal with what had happened to me. Your doing a great job at being strong for your son! :)

    Like

    February 19, 2013
    • Thank you, I’m trying my best for him. It’s so hard since he doesn’t want to talk to me about it though. Right now I’m just guessing on the best course of action for healing.

      Like

      February 21, 2013
  12. I LOVE that you took him to the fire station, what a great idea. I’m sure it helped him deal with his feelings about the situation more. And how fun to sit in the truck! You’re such a wonderful, supportive mother. I know how important that is to a kid with allergies! I don’t know what I’d do without my mom’s constant encouragement and support!

    Like

    February 19, 2013
    • It was Natalie’s great idea! I think it helped him, but he was really shy and still didn’t want to discuss that night, even with the firemen. I guess I just need to give him time and he’ll come around. I try to be a supportive mother, but most the time I feel like I’m being too naggy and annoying ;) How wonderful you have a great support system!

      Like

      February 21, 2013
  13. It made me more restrictive and nervous about my diet than I needed to be, because I was so afraid of it happening again. Imagine dealing with all that food allergies entail, and then also worrying about paying for treatment. It’s enough to make anyone overly cautious.

    Like

    February 19, 2013
    • Of course! It an be really expensive, even with insurance. It’s really sad though – we shouldn’t have to think about how much it costs to receive a life or death treatment.

      Like

      February 21, 2013
  14. Jennifer-
    So glad to hear that he’s doing well! (He’s so handsome!) You mentioned a few sites for online support groups for the kids but I am wondering if there is also online support for the parents as well? I know all food allergy parents could use that!

    Like

    February 19, 2013
    • Hi Tracy – Thank! The online support groups are really for the parents and the play groups are more for the kids. It may not be that clear in the post now, so thanks for mentioning it – I’ll update it now. Jennifer

      Like

      February 21, 2013
  15. I love that you took Tristan to the visit the firemen that took care of him! That is a great way to give him something positive to remember alongside the scary parts. We also do a bit of art therapy at home, though we’ve never actually visited the first responders.

    A psychologist or clinical social worker can also be a good resource for kids (and moms!) that are having a rough time after an anaphylactic reaction. We started my 8 year old in therapy when he went through a phase of intentionally eating allergens because he wanted to know what those foods taste like. He has other medical conditions in addition to multiple anaphylactic food allergies, and giving him an adult who was aware of his medical needs but not involved with selecting or enforcing treatment plans has been very helpful.

    Like

    February 19, 2013
    • It was fun to see the same firemen, although I confess I don’t really remember who was at our house that night as I was so focused on Tristan. How frightening your son went through a stage where he wanted to test his allergies himself! I’m sure that was a really hard time for all of you. I’d like to know more about the visit with the psychologist and how it helped him. I can see how an authoritative adult who is a non-family member, could really help. So glad you guys found an answer!

      Like

      February 20, 2013
  16. I 100% agree with the in-clinic food challenges! I think that should be a no brainer. I went through that, and without that, I’d still be a paranoid wreck about food because of all the conflicting info I got with the testing.

    My dad is currently going through allergy testing due to chronic hives, and so far, only 2 allergies have shown up as positive…and even though he’s cut those out, he’s still reacting. Thankfully I have gone through this before and am able to offer tips and advice (which has got to be rough on him getting tips from his daughter) which seem to be helping in part, though he’s having a hard time with “but the test said I wasn’t allergic” issues. I get that. I explained to my parents that the only sure result is how your body reacts when you eat it when it comes to food (unless you are so allergic you can’t even smell or touch it), and that was NOT what they wanted to hear. I also told them your body can take up to a month to detox (that’s how long it took me), and that was also news they didn’t like. Anyway, I am hopeful that he can get these things sorted out soon! I think a lot of it is cross-reactive issues that may or may clear up in time, but for now he’s pretty miserable. I am just glad that I can be of help…even if it is a little bit.

    Best of luck to you with the little guy! I can only imagine how hard it is when it’s your child! You are in my thoughts and prayers for sure, and I’m so glad to hear that he seems to be doing so well! :)

    Like

    February 19, 2013
    • Thanks Julie – I think for us the food challenges didn’t seem scary because our allergies were always underplayed by the few random allergists we say because of my son’s negative test results. They never considered him to allergic because they didn’t even believe his eczema was triggered by foods, the same foods he is anaphylactic to now. Oh, allergies are so confusing! Thank goodness your dad has you! I’m sure he’s already so overwhelmed. My parents are going through this more on the intolerance side and I know how hard it is for them. I think the older we get, the more set in our ways we become and it makes it so hard to make drastic changes in our life.

      Like

      February 19, 2013
      • I have some intolerances, so I understand completely! Changes is hard! Even though I know something will make me ill, because it’s not “life threatening”, it’s hard to get away from eating it. I think that’s why it is so important to remember that just because you are not anaphylactic today does NOT mean you won’t be tomorrow. When something makes you ill, DON’T EAT IT! Your body is trying to warn you – and we should listen. It’s hard to find the line between paranoid and cautious, but I’m finding it…slowly but surely. :) Best of luck with your parents, too, and thank you for your kind words!

        Like

        February 19, 2013
      • It is so hard. I have quite a few intolerances, so I try to avoid those foods on a daily basis, but forgoing them completely, I’m not ok with. But yet I ask my son to do this daily…however, with him we’re not talking about intolerances, but anaphylaxis. But it still doesn’t seem fair.

        Like

        February 20, 2013

Trackbacks & Pingbacks

  1. Anaphylaxis aftermath: what happened once our toddler came home from hospital | UK Nut Allergy Blog

Tell us what you think...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 7,072 other followers

%d bloggers like this: