Skip to content

Posts tagged ‘allergy testing’

How I Became a Food Allergy Mom (Guest Post)

Today’s guest post is one many of you can probably relate to, I know I sure can. It chronicles the sudden, and unexpected journey from mom to food allergy mom. Our perspectives can change in a flash or in this case, with one bite of food. This post is a reminder of just how fast our lives can change.

-Jennifer

How I Became a Food Allergy Mom (Guest Post)

By Elizabeth Flora Ross (Bio below)

“I think she’s allergic to strawberries,” my husband said one night. I was dubious. My daughter’s eyes would water, her nose would run and she would sneeze when she ate them. But I did not recognize those as food allergy symptoms – I dismissed it as seasonal allergies. One evening as we enjoyed a family movie night, our daughter began to complain she was itchy and hot. With only the light from the television, I couldn’t really see her. Then she said she needed to use the potty. When I turned on the light in the bathroom, I was shocked by what I saw. Her face and lips had transformed into a huge, red, swollen rash.

Read more

Eczema & Asthma – Testing for Food Triggers (Guest Post)

I’ve asked Dr. Farshchian to help us distinguish between food allergies and sensitivities and to help us better understand testing methods for each. While we’re not sure if food is the root cause of eczema, most of us have experienced first hand how food can trigger flare ups. I hope today’s post can shed some light on the IgE vs. IgG debate – knowing both can trigger eczema and asthma.

-Jennifer

Eczema & Asthma – Testing for Food Triggers (Guest Post)

By Dr. Thalia Farshchian, N.D. (Bio below)

Food sensitivity testing is gaining popularity to assist in identifying triggers to chronic conditions like eczema, asthma, nasal congestion and more. To draw a conclusion that a particular food triggers symptoms, the gold standard for identification is an elimination challenge.

The elimination challenge can be quite the challenge in and of itself when you are considering eliminating all of the most common triggers: gluten, dairy, eggs, corn, soy, nuts. In clinical practice, I have found food sensitivity testing to be a very helpful guide as it alleviates an element of stress on the child and family.

Read more

Mother’s Intuition Saves her Son from Surgery (Guest Post)

Kids get sick, it’s just part of growing up. But when is a cold not just a cold? When does it mean there could be more going on internally? What if you could help your child get better? I know you’re like me and would want to do everything you could possibly do for your child in order to keep them healthy and happy. Today’s post is about how one mom did just that. She realized surgery wasn’t the answer in her son’s case and she went looking for answers.

- Jennifer Read more

Frustrations and No Answers For Allergic Asthma

Frustration for me is having no answers. Right now I’m very frustrated.

Over the past few weeks Tristan’s asthma has started to flare out of control. Every night he has coughing fits as the Ventolin and the air purifier don’t offer the relief they used to. We’re on to Flovent now to see if it can help provide him with some relief. I cringe at using it because it’s an inhaled steroid with studies proving it inhibits growth, although by a very small amount. Regardless, it’s a steroid and in my mind, is not for long-term use and I like to avoid them at all costs. BUT since breathing is essential, if Flovent is what I have to use to ensure my child can breath properly and safely for now, then so be it. I will submit to using it for the safety of my child. But I vow to find his asthma triggers. I will not simply medicate my child for the rest of his life. I will find answers.

After years of struggling with his eczema, we finally have a good understanding of his food allergies and sensitivities, which were the primary triggers for his itchy skin. So I was very sure that the answer to his flaring asthma had to blamed on something else – most likely environmental or seasonal allergies. So, first stop, the allergist for some skin testing. I know birch pollen causes his eczema to flare up each spring, but doesn’t seem to affect his breathing. But when ragweed was at its peak late this summer, he had a severe asthma attack out of the blue. Coincidence? Before and after that his asthma would come and go with the night-time coughing. Was it due to ragweed? Mold? Dust mites? I couldn’t wait for the allergy test as I was 100% sure we would find the answers.

frustrated manAnd I was very wrong. I’m sorry to say that Tristan tested negative in skin tests for the most common seasonal and environmental allergens. Like I said, frustration. That’s where I am right now. Beyond frustrated.

I felt so disheartened when I saw the results. I’m sure most people would be relieved to see negative test results, but not me. I wanted answers. I asked the doctor how this could happen – how could Tristan test negative when it seemed pretty obvious that ragweed triggered his severe asthma attack. The ragweed numbers were off the chart that day according to meteorologists. It couldn’t be a coincidence. According to his doctor, there are some people, mostly atopic, that test negative in skin tests, but show positive results (an actual immunoglobulin E (IgE) mediated responses) in the lungs themselves! What? Wow, I’d never heard of this. Before I got too excited, he explained that it’s not recommended to do the lung test on young children as it’s quite invasive as severe coughing must be induced in order to get the secretions they need for testing. I believe this method is called bronchoalveolar lavage (BAL).

So, the pediatric allergist was not willing to do the test on him, and quite frankly, I’m not sure I’d be game either after reading more about it. Where does that leave me? With no answers. Frustrated.

But, as with his eczema, I shouldn’t have expected the asthma journey to be easy. Medication is readily available, but actual causes, actual triggers, much harder to find. It may take years, but I won’t give up. In the mean time, Tristan is going to be taking Flovent regularly so we can get a better handle on his asthma. The doctor had an excellent point when he indicated that inflamed lungs result in more severe allergic reactions to food allergens. And I certainly do not want to experience full-blown anaphylaxis again, ever. So, Flovent for now.

Then, next step is homeopathy. Fingers crossed, toes crossed, everything crossed. Surely it won’t be that easy, but I’m always hopeful. If I lose hope, I’ll give up the fight for my child and that’s just not an option.

Confession: I Overlooked a Suspected Allergen In an Ingredient List

I feel really lucky at this moment because I made a mistake, a HUGE mistake. Thankfully, Tristan is ok.

A little background:

We think Tristan has an allergy to almonds. He used to drink almond milk daily and was incredibly itchy. After stopping the milk, the itching stopped. So, now, as far I as I know, he hasn’t had almonds for about a year. No, I take that back, he tried a bite of yogurt made from almonds the other day (completely dairy free) and he got a little pink around his mouth, so he didn’t have any more. I avoid almonds now because I just don’t know if he could have developed a more severe reaction to them, like he did with dairy not long ago. Blood and skin testing was always negative, like most everything else – even for his anaphylaxis to dairy.

Back to the present:

He’s been eating these crazy healthy gluten-free snacks for several months now, from ShaSha Co. They’re organic, raw, vegan, with no added sugar, and contain prebiotics. Just a really great product. He eats a few here and there for “dessert,” but doesn’t eat them religiously.

shasha_snacks

Yesterday I got a new bag out and checked the ingredient label like I usually do for a new package of a favorite food item. Just wanting to make sure the company didn’t add anything new and unwanted in the item.

And what did I read in the ingredient list? Almonds! What??!!! I snatched the bag away from Tristan and quickly explained that mama made a mistake and these snacks may actually contain almonds. He was totally fine. Didn’t make a sound of protest. I guess his only anaphylactic episode is still to recent and at the top of his mind.

Surely, this company has just recently added almonds to their snacks. I would have clearly seen almonds in the ingredient list before. I am SO careful!

I take a bite just to see if they taste the same to me. Hmmm…they taste exactly the same. Adding almonds probably would have given them a slightly different taste. And they sure do look the same.

At that point a big, hard, rock started to form in the pit of my stomach. I emailed the company and asked them if they’d recently added almonds. They quickly replied and said, no, always contained almonds.

Oh man. Wow. I missed it……what if Tristan had a reaction?!

MAJOR Mom Guilt!

But…he didn’t have a reaction. He’s been eating a little bit of almonds for months now apparently and without reacting. But, I don’t feel safe testing almonds on him at home anymore, so we’ll wait and talk to his new allergist about it. No more Sha Sha snacks for now. Hopefully we can do an in office food challenge and see how it goes. I’d love to be able to give Tristan almonds from time to time. Unlike most his other allergens, almonds are actually healthy and I hate that he’s missing out on them.

So, lesson learned. We make mistakes – as hard as we try not to – it happens. I am certainly humbled by this experience and am thankful everything turned out ok.

Now it’s your turn, confession time. What colossal mistakes have you made in regards to your child’s health? Please don’t tell me I’m the only one that put their child at a HUGE risk…..

It’s time to get it off your chest. Trust me, it feels good to confess :)

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?

Our Eczema Trials: Elimination Diet (How You Can Do It Too!)

our eczema trials: elimination diet

Try an elimination diet and stop eating the foods harming your body.

An elimination diet really isn’t that hard and for many it provides a great sense of relief when food allergies or intolerances are discovered. In truth, it’s deciding to do the diet and embracing your decision by fully planning and preparing for it, that’s the hardest.

Why an Elimination Diet?

After years of worsening eczema and unsuccessful attempts with multiple doctors to identify the triggers, I finally realized I could no longer put off an elimination diet for my son. It was time to figure out which foods were aggravating his eczema when allergy testing all came back negative. The best way to do that, according to many health professionals, in fact it’s considered the “gold standard” for food allergy diagnosis by many pediatricians, is by conducting a food challenge. A food challenge is when certain foods are consumed in small doses and then the individual is monitored very closely, in a physicians office is best, to determine if the food causes any reaction in the body.

Food challenges are the only 100% accurate way to prove a food allergy exists, other than a history of reactions with specific foods. Allergy testing is not usually reliable as false positives and false negatives, like was the case with my son, can frequently occur. In order to successfully conduct the food challenge, it’s best to remove the foods in question from the diet completely for a given amount of time in the form of an elimination diet.

Overwhelmed? Embrace the Diet and Plan, Plan, Plan.

When I finally decided to move forward with my son’s diet, the planning seemed very overwhelming. It’s best to work with a physician or nutritionist when planning the elimination diet to ensure all the proper foods are eliminated correctly AND to guarantee you’re not putting your or your child’s health in jeopardy. Removing nutritious foods from the diet means they need to be substituted with equally nutritious alternatives and this can be tricky if you’re not very well versed in a healthy eating and nutrition.

Not only is balancing nutrition hard, but it’s VERY difficult to remove staple foods from your diet. Many of the foods that should be eliminated have been in your or child’s diet since not long after you took your first bites of food as a baby. Perhaps, your body has been used to these foods for so long, that slowly over time a reaction has been building up (in the way of eczema or asthma. You don’t always consciously think about these foods because they’re part of you. You’ve never had to think about it before. So eliminating these foods is like learning a whole new language. You must become a thorough label reader, understand the confusing and misleading world of “may contain traces of,” recognize alternative names for foods (and there are many), and learn to cook with substitute ingredients.

Find the Right Resources

My mother-in-law is a super health food fanatic, so I relied much on her expertise. I also referenced “Dealing with Food Allergies in Babies and Children,” by Janice Vickerstaff Joneja, PhD, RDN. This is an EXCELLENT book that discusses food allergies in-depth and then offers detailed steps on how to conduct elimination diets for various ailments – one of which is eczema! Using Dr. Vickerstaff Joneja’s plan, made things much easier. Her book told me exactly what to eliminate and for how long.  We followed her eczema elimination diet to the letter and it improved my son’s skin tremendously, within a matter of days. When it was time to add the eliminated foods back into his diet, by way of a food challenge, we immediately were able to identify which foods were triggering his eczema as he became very itchy after eating most of them, occasionally with hives. In some cases it took a few days of consuming the foods to see a reaction. In the end we identified the following as eczema triggers for my son: dairy, gluten, soy, and corn. We later also identified through trial and error that many tree nuts cause similar reactions for him.

I’m happy to say that through an elimination diet, we saw major improvements in my son’s skin! This was one of the biggest wins in his battle against eczema. I cannot recommend elimination diets enough.

Yes, it’s hard, but you CAN do it. Here’s how:

1)    Embrace the decision 100%.

2)    Arm yourself with the right resources: physician, nutritionist, books, friends for moral support, etc.

3)    Identify the foods to avoid and ALL the alternative names for these foods.

4)    Have recipes ready to go and your pantry stocked.  Plan on spending a few hours at the grocery store carefully reading labels and finding new food substitutes.

5)    Go for it! If you feel the need to cheat, think about why you want to cheat. Is it because you’re craving one of your favorite boxed/processed chocolate chip cookies that are no longer ok to eat? Then make some using alternative ingredients. Trust me, the alternatives are actually really good!

Here are some great bloggers featuring amazing, healthy recipes that are allergy free, some are top-8 allergy free. Prepare some of their recipes in advance and prevent the desperate need to cheat by having your favorite foods with alternative ingredients on hand and ready to go.

Whole Life Nutrition Kitchen – super healthy recipes from a nutritionist.

Gluten Free Goddess – most recipes are free of more than just gluten.

Tessa the Domestic Diva & Real Food Allergy Free – check out their Allergy Free Wednesday Recipe Hop!

Grateful Foodie – practical recipes for the family.

Allergy Free Alaska – gluten and dairy-free.

Allergy Free Yumminess – check out my Pinterest board full of amazing allergy free recipe finds from around the blogosphere.

Looking for more info and tips on how to complete an elimination diet? Check out my guest post for ScratchMeNot “What’s an Elimination Diet Really Like?”

Have you tried an elimination diet? Did you see results?

Allergy and Eczema Improvements with Low Dose Allergy Treatment (LDA) – (Guest Post)

On the Itchy Skin Support Forum, Breanna from Allergic Adventures mentioned having good results with LDA to treat her son who has food allergies, eczema, and asthma.  I was really unfamiliar with this type of treatment, and being open to most ideas, I asked Breanna to share her experience with us.

Just what is LDA? It’s essentially VERY low dose injections of combinations of known allergens. It is not to be confused with Immunotherapy and is quite different, although I cannot personally clarify what sets them apart. Visit this Jace Medical for more information on LDA vs. Immunotherapy. Dr. Buscher, MD, also have some good information on his website about Low Dose Allergy Treatment.

Thank you, Breanna, for sharing your story with us!

Bio: Breanna is a full-time mom to three & part-time portrait photographer, in Kodiak, Alaska. Her oldest son has eczema, asthma & multiple food & environmental allergies. She attempts to blog about that at Allergic Adventures.

Allergy and Eczema Improvements with Low Dose Allergy Treatment (LDA)

Our allergic adventures began in 2007 technically, but we didn’t realize what was going on until 2008. Our oldest son was born happy & healthy. At about 2-1/2 months he developed a rash, we took him in & were prescribed a cream. We used the cream, naively I suppose, & the rash disappeared. I didn’t think much more of it, or the fact he spit up often. A happy spitter, the doctor’s called him, so nothing to worry about. Of course hindsight is 20/20.

At 17 months he was first allergy tested for a handful of allergens- milk & eggs showed up. We had suspected these & already removed them from his diet, so it didn’t help us much in finding the cause of his eczema. At this point, he was waking up multiple times a night, itching & miserable, his skin looked red & irritated, but no open wounds & nothing on his face. At 18 months, he was hospitalized with a staph infection. Broad-spectrum antibiotics pumped into him for three days, then we were released & his antibiotic prescription continued. Two months later, he was allergy tested more extensively. A number of intolerances showed up, in addition to his milk & egg allergy. Peanuts also showed up this time. We cut out all of these foods & his skin began to heal, & so it seemed our life was as well. Unfortunately, this only lasted a few weeks. Then suddenly the eczema worsened, finally spreading to his face, the nights were sleepless; the T.V. was on excessively & the doctor’s had no answers.

In the spring, I learned about a doctor who could possibly help us with an alternative approach.  We didn’t go to him immediately, I was about six months pregnant with baby #2 & we were hesitant with the prospect of this doctor. I have to admit we became weary of doctors, after they repeatedly told us he would grow out of his allergies, the eczema, that the spitting was no big deal, the steroid cream prescriptions, etc. We tried so much conventional approaches unsuccessfully, we certainly reached a point of disbelief & almost mistrust.

I then came across a book called “Healing the New Childhood Epidemics” by Dr. Kenneth Bock. I felt like a light suddenly turned on. I had previously done extensive online research on severe eczema, which is how I learned about this book, among other treatment ideas. When I received the book in the mail, I immediately raced through the pages, searching for some kind of answer. I came across information on yeast overgrowth, reading the symptoms, & immediately knew that’s what he had. I went to my doctor & asked him about this theory & he explained to me that yeast overgrowth doesn’t actually exist. That’s when I sought out that doctor recommended to us a few months before.

Now I have to explain we live on an island, more or less in the middle of nowhere. We do not have many doctors here & have to travel, quite expensively, to seek out new providers with alternative approaches. While I know this is a choice we make, it’s one I believe in. When we made our first appointment with this new doctor, my son was diagnosed with yeast overgrowth within five minutes. He also explained to us a treatment called Low Dose Allergy (LDA) Therapy.

The easiest way for me to explain LDA is to tell you it is the process of retraining the immune system not to react allergically to the substances it’s reacting to, whether it’s food, environmental or chemical reactions.

The less summarized & more scientific definition of LDA is:  “…desensitization with combinations of a wide variety of extremely low dose allergens…These allergens are given with the enzyme, beta-glucuronidase. The beta-glucuronidase acts as a lymphokine, a substance that potentiates the immunizing ability of the allergens…appears to specifically induce the production of activated T-regulator (T reg) cells, once known as T-suppressor cells, which can live in circulation for many years.”

LDA has been in the U.S. & Canada since 2002; it was developed by Dr. Shrader after Enzyme Potentiated Desensitization (EPD) became illegal to import. Both of these treatments, which are almost one in the same, have successfully treated hay fever, eczema, food allergies or intolerances, Crohn’s disease & asthma, among many others. However, it is not FDA approved. This makes it difficult to actually advertise this type of treatment, as well as expensive because insurance does not cover it.

It’s estimated over 400,000 doses of EPD & 300,000 doses of LDA have been given & there has never been a life-threatening reaction. The treatments are given every 7-8 weeks for about the first year. Depending on the response from the patient, they may continue to receive LDA every 7-8 weeks or possibly space them apart further. Over time, treatments may be spread to every six months to a year, potentially stopping altogether with no return of symptoms. Children typically stop earlier & successful treatments have been given to babies as young as one month.

LDA can either be administered with an intradermal injection, which basically means a shot on the surface of the skin, or sublingually. Many patients notice a difference after their first treatment. We certainly noticed a response after our son’s first treatment; however, it wasn’t as significant as we had hoped for. During the first year of treatments, the eczema patches on the bottoms of his feet, on the front of his legs & some of his forehead began to clear up. We started treatments when he was 2-1/2, when he was a little over 3, we continued to notice improvements but we honestly hoped for more. He still didn’t sleep well, his skin was clearer but still itchy, his wrists & ankles were still cracked & his forehead still had one quarter size spot that wouldn’t grow hair. It was challenging, trying to be patient for this treatment to work its magic…at least we hoped it would be magical for us. It certainly did have significant positive effects & we often had to remind ourselves that he was making large improvements, even if it wasn’t as quick as we hoped.

The major disadvantage of LDA is the highly restricted 3-day diet that patients have to follow. There are also certain medications patients cannot take within a certain time frame of their dose. For example, antihistamines are to be avoided for five days prior to the dose & for the three weeks following the dose. I know this can be a challenge for some, who take zyrtec or Benadryl regularly. However, we have significantly decreased how much antihistamine our son takes since starting LDA. The overall outcome can certainly be worth the challenges of the diet & medication restrictions. Of course, if we were in a situation where we thought we needed to administer the antihistamine or other life-saving medication, we would of course administer it regardless of the time frame.

After 8 doses of LDA, we decided to take a break. We had taken our son to a Traditional Chinese Medicine doctor & found tremendous success. Those few spots that just hadn’t healed from LDA, disappeared within a few days of his acupuncture, massage, herbs & topical ointment. His wrists & ankles were soft, the cracks were gone; he was suddenly sleeping through the night; he was just healthier, finally! Last fall, though, we decided to start LDA again, after an entire year without it. He sometimes gets small rough patches of skin, especially on his back, & it’s always cleared & soft within a few days of his dose. It does certainly help, but I can’t be sure how much it helps. He has gotten a significant number of allergens & intolerances back in the past six months or so, but this may also be attributed to getting older (he recently turned 5).

It’s always a guessing game as to what the triggers are & what treatments are helping. However, the one thing I know for sure is that conventional medicine was not effective for us. We have sought out a significant number of treatment options & found many to be unsuccessful, but without doubt yeast overgrowth, TCM treatments & LDA treatments have had a significant positive impact!

An Incredible Experience with National Jewish Hospital’s Atopic Dermatitis Clinic (Guest Post)

Nancy, of Real Food, Allergy Free, and I connected via an eczema Facebook group, around the time I was starting The Eczema Company. When I learned that she was heading to National Jewish Hospital with her daughter, I was so excited for her and eager to hear first hand what her experience was like. NJH has such a unique, team approach to atopic dermatitis. I was sure you’d be just as curious as I was about how the hospital’s specialized clinic helps parents and children gain control over their eczema. So, I was thrilled when Nancy agreed to share her story with us. Thank you, Nancy!

Bio: Nancy is a home-schooling mom of four beautiful children.  Her youngest struggles with severe eczema.  Nancy is passionate about the real food movement, but is also a real mom with a limited amount of time and money.   Her blog, Real Food, Allergy Free , features fast, frugal and (mostly) healthy allergy-friendly recipes that even “normal” people would enjoy.

Born just a few days after her due date, Bella was a content and healthy newborn.  At six weeks old her skin turned bright red.  It almost looked raw.  I didn’t rush her to the doctor until it started oozing yellow fluid.  The doctor diagnosed her with infected eczema.

I remember thinking it didn’t look like the eczema my other children had.  My other children had small raised patches of itchy skin.  Bella’s entire body and bald head was bright red and oozing.  But then again, my other children never developed eczema this young nor had it been infected.  We were sent home with oral antibiotics, topical antibiotics and steroids, and a referral to a dermatologist.  That was the beginning of an exhausting five-year battle with the worst case of eczema I had ever seen.

As a newborn, eczema didn’t seem to bother Bella, but as she grew older and developed motor skills, the itching and scratching never seemed to stop.  All of her clothing and sheets were covered in blood stains from the wounds she opened while scratching.  We saw multiple pediatricians, dermatologists, and allergists.  Allergy testing showed she was allergic to egg, dairy, soy and nuts, so we limited her diet accordingly.  We tried every holistic approach we could find including consulting naturopaths, trying the GAPS diet, homeopathy, nutritional supplements and UVB therapy.  I was thankful that these treatments made the days somewhat tolerable, but the nights were unbearable.

Sometime in those first years Bella developed night terrors.  Even before she was able to talk in complete sentences, she would scream “no” and “ow” while tossing and turning like she was in pain.   Because she dug into her skin like a crazed person, my husband or I had to sit with her and do our best to stop her.

The older she grew, the more frequent the night terrors occurred.  It came to the point where there were more night terrors than sleeping.  Two hours of sleep per night became the norm.  We just couldn’t do it anymore.  When Bella was four years old, we asked the pediatrician for something to help her sleep.  After trying herbs and Melatonin, the doctor prescribed Clonodine.  It helped, but she was still having a couple of night terrors per night.  The doctor mentioned the next level of medication he could offer was Prozac.  We were not willing to go there, so we decided to be thankful for what sleep we were now getting.

I HATED that my child was so dependent on medication and yet was still miserable. My pediatrician and my dermatologist both independently recommended I take her to Cincinnati for a therapy that was basically chemotherapy.  I drew the line there.   I would have to be happy with where we were in this battle.  There were no options left.  That is until I joined a Facebook group I saw Jennifer was part of called “eczema parents.”  Everyone there was talking about a two-week program for children with severe eczema at National Jewish Health in Denver.

Bella in her wet wraps at NJH

I cannot explain in words the emotions I felt when hearing about this program.  I saw before and after pictures that blew my mind.  They were helping children live normal lives without extreme medical intervention.  I wanted to hope, but I was so afraid of disappointment.  I had no idea how we would afford a program like this, but I knew we had to give it a shot.

A phone call later I learned that National Jewish has a unique approach.  Every patient is assigned a team of doctors and nurses including an allergist, dietician and psychologist with specialized training in Atopic Dermatitis.  The skin is treated with hydration therapy (wet wraps) while extensive testing is completed to find triggers that cause the eczema to flare.  The child also attends individual therapy and group art therapy, and the parents attend group therapy.  I was thrilled to learn that our team would also include a sleep specialist.

National Jewish Health was a true answer to our prayers!  Through the miracle of wet wraps, Bella’s skin was 99% clear within three days!  You can read a daily log of our experience here.

The rest of the two weeks were spent teaching us how to maintain her new skin and testing and challenging her food allergies.  To my utter and complete amazement she passed all of her food challenges.  Not only did we leave there with new skin, but we left with only one dietary restriction: nuts.

Going into this program, I felt fairly confident that they would help Bella’s eczema and maybe open up her diet a bit, but I had no idea if they could help with the night terrors.  In just a few consultations, the sleep specialist gave me the hope I was looking for.

The sleep specialist explained that night terrors were nothing more than the child getting stuck between stages of sleep.  Night terrors are usually triggered by lack of sleep.  It was normal for kids with severe eczema to wake up from the itching several times per night.  She was sure that once we got the itching under control, the night terrors would go away.  We would no longer need medication.  To my amazement she was right!  Bella started sleeping through the night while we were there.  In the five months since, she has had three or four night terrors, and they were obviously connected to not getting enough sleep (sickness, house guests, etc.).

Should you take your child to National Jewish?  Absolutely!  Can you imagine walking into a hospital where all of the doctors just “get it?”  Everyone from the doctors to the nurses and even the sleep specialist, who isn’t normally part of the team, understood exactly what we were going through, and were confident they could help.  There is no cure for eczema, but the team at National Jewish has come pretty close.  Our lives were forever changed by the team at National Jewish.  I only wish I had known about it sooner.

Bella is all smiles with her eczema now under control.

Son’s Delayed, Serious Allergic Reaction and My Guilt

As food allergy parents, we are so diligent in removing possible allergic foods in our home. We read all the labels thoroughly and buy only food we know is safe. So, how did my son have an allergic reaction at home today? I honestly have no explanation. I feel like a professional label reader. I can spot hidden sources of dairy, gluten and soy, like a champ. Nothing escapes these eyes. Not until recently that is.

I am embarrassed, ashamed, sad, and mostly I feel guilty that I let an obvious food allergy into my home and into my trusting son’s cereal bowl this morning. He is so good at asking me if a new food has allergies in it. Anytime anyone wants to give him food, he turns to me and asks if it’s safe. He’s so confident in me. But I made a mistake. Thank heavens he’s ok, but still, this one is all on me. Mom is not perfect – that’s probably a harsh lesson for any child to learn, but one they must.

What’s so odd is that he actually consumed this particular allergic food two times in the past week without any obvious reactions. But this morning, a few minutes after beginning on his bowl of cereal, he started to get pink around the mouth. A few minutes later his wrists became itchy and he asked me to tickle them to help him avoid scratching (that’s our little trick which he loves). This happens from time to time – he gets a little itchy and most the time we have no idea why (since we avoid all his major food triggers now). But, I was watching him carefully since the itch was combined with the pink around the mouth. Then a few minutes later he started coughing. My alarm bells went off. This never happens. The only time I’ve seen these reactions together was when he reacted to dairy during a food challenge over a year ago. Now I was officially worried. Other than the pink around the mouth, he looked ok though and was acting fine. I asked him how he felt and he said he wanted his medicine. So, I gave him his antihistamine and two puffs from his Ventolin as a precaution. The coughing continued and then he tells me his throat hurts. OMG, is his throat closing?!! Ok, now I’m officially on full alert and up to get the EpiPen. I sit by him and watch, asking him constantly how he is. The Ventolin kicks in and shortly after so does the antihistamine and the crisis is averted. Overwhelming sense of relief. We didn’t need the EpiPen, but we were VERY close. I always tell people that my son is not anaphylactic, that he’s never had a true anaphylactic episode, but now I’m not so sure.

Just what was this offending food? It was granola. The ingredient that almost led to an ER trip? Spelt flour, a type of gluten. The sad part, I know spelt is glutenous. But, I somehow overlooked the ingredient. I remember scanning the label on the box for at least a few minutes at the grocery story. I remember being so excited that it was free of all Tristan’s allergens that I bought four boxes so we wouldn’t run out. Ironic.

What I find so odd about this story, is that Tristan had eaten this cereal twice in the past week and was fine. The first time, no reaction at all. The second time, he was very slightly pink around the mouth (but we see this every once in a while and aren’t sure what it’s in relation to, so didn’t make the connection with the cereal), then the infamous third time – you now know the scary story.

Another interesting fact, Tristan has never reacted positive to gluten in standardized blood or skin allergy tests. He was tested once at one year old and again at three years old. But look how he reacted today. What does that say about allergy testing? It’s why we’ve come to rely only on our son’s past reaction’s to food, the elimination diet, and food challenges.

So, I suppose the moral of this story is that we can be lulled into a very false sense of security as allergy parents. We feel confident that we’re being diligent in allergy proofing our home, but in fact, we can make mistakes. I sure did. I feel horribly guilty, but that doesn’t help my son. I have to buckle up, keep my eyes peeled for the next offending allergy trying to strike, and be ready if/when it does.

Have you experienced false negatives in allergy testing? Have you or your child reacted to a food only after consuming it several times first?

Follow

Get every new post delivered to your Inbox.

Join 7,014 other followers

%d bloggers like this: