AD RescueWear would like to feature Rachel Howard. We hope this story inspires and helps other parents struggling with child eczema, asthma, food allergies and the filaggrin gene mutation. Below you can read her journey and how she found successes along the way.
Rachel's Story - A Dedicated Mother - Whose Child Suffers from Eczema, Asthma, Food Allergies and a Gene Mutation (filaggrin gene).
My name is Rachel, and my son Clint suffers from severe atopic dermatitis, also known as severe eczema. Clint has a triad of atopic issue. Among his severe eczema, he has intermittent asthma, and an assortment of allergies.
We first noticed that something was different when Clint was around nine or ten months. He had two very dry circular patches on his cheeks. At first we attempted to treat his cheeks with mupirocin ointment, and even hydrocortisone cream. Neither of these were effective long term, and in fact the hydrocortisone cream thinned out his skin too much, which caused pretty bad cracking. After some internet research, we learned that these patches could be a sign of a bigger issue; allergies. At ten months we had our pediatrician do a rast test. A blood test that would test for specific allergies, as well as give an indicator of just how allergic our son was.
This was just the beginning for us. Clint's test results were in the 300s, and it showed that he was allergic to an assortment of things, from pet dander, to many types of food, the most serious of which was a peanut allergy. Among the food allergies, he tested positive for gluten. At the time he was eating a lot of baby food, and after reading the ingredients we realized that most were made with peas (which is a legume tied to the peanut family) and the combination meat and veggie dishes often contained egg whites. Once we removed these from his diet he did much better. Mind you, his diet was and continues to be a challenge.
At twelve months we were referred to and allergist and immunologist. After more testing, his skin tests results showed he was not all that allergic, so we were encouraged to try the desensitizing method. This didn't work very well, as Clint has a horrible gag reflex, and would literally throw up a lot of new foods we would try. Anything with texture was a definite no go. Then there was the night where once again, everything changed. My husband had come home from work, and like any other day, he was giving out raspberries on their bellies, and kissing them goodnight. Very shortly after a series of playful kisses on Clint we noticed mosquito-like welts appearing on Clint's neck, and under his eye. We knew that something was wrong. We called 911 and told them we thought our son was having an allergic reaction to something. We didn't know if we should use the epi junior pen we had been given because he appeared to be breathing fine. Then he started projectile vomiting to the point that he couldn't breath. We administered the epi pen and were off to the hospital shortly thereafter. To make a long story short, we discovered that our son is extremely allergic to garlic, and merely the kissing from my husband onto his skin caused and anaphylaxis reaction. Subsequently, a second rast test put Clint's results in the thousands. And after months of trial and errors, our allergist has diagnosed Clint with a gene mutation, where he is actually missing the filaggin gene. In laymen's terms, the epidermis layer of his skin. All of his atopic issues are essentially side effects of this greater disease. Desensitizing does not work in this case, and everything is based on a trial and error basis. Also, just because Clint is not having a reaction to something at the present time, does not mean in six months he won't. He is essentially allergic to everything, but as long as the item is under a 5 onthe rast test, he can continue to have it. We recently found out that he has to avoid turkey of all things. Luckily, his dairy test is at a 3 so he is able to still have regular cows milk, and get a yogurt a day which is recommended by his allergist. He started taking probiotic gummies (one a day) as well. He does well with ham right now, and all "free" bread. Surprisingly, he manages to get all his food groups but I must admit his diet is pretty boring, as it varies very little day by day.
Clint also takes children's zyrtec in the morning, and hydroxyzine at night. We used to use benedryl, but that stopped working and he would be up crying profusely throughout the night because he was so itchy. We also tried Singulair with Clint. Singulair has not been used on children under the age of six, so it was experiemental. Once again, something to try. I would not recommend Singulair at all. We stopped using it after one month. Clint seemed to be having side effects, but because he is so little, he has no way to tell us. We decided it wasn't worth it to have him on something that could be adversely affecting him, and I believe we made the right choice.
One of the most beneficial things we have used are the AD Rescue Wear suits. He wears them 24/7 and it is the only way to keep him from scratching his skin. He still manages to scratch whenever he can, but I cannot imagine what his skin would look like without these suits. He wears them dry most of the day, and after his nightly hydration bath he wears a damp suit with warm jammies over the suit. The damp suits provide a cool relief for inflammed skin. As for lotions, we have tried everything. What we are currently using is a prescription called hylatopic. With our insurance it is $20, without insurance it is very expensive. We also use exederm lotion, which is also available in a flare control form. We use the flare control when his legs in particular have been very irritated. We always have Aquaphor on hand, and use this on his face and hands. CerVa is also a very decent product.
We have come to realize that Clint's atopic issues are something that he will most likely always have. We also realize that as he gets older, they will probably become more manageable once he learns to control his urge to itch and scratch. For babies, and toddlers this is just something you cannot explain. We just try our best to keep him covered as much as possible, and as comfortable as we can. The suits are invaluable, and things like sleep sacs and socks over his hands have really helped with bedtime. Currently, I put my socks over his arms and hands, under his suit and jammies, and so far he has been unable to figure out how to get them off. So, there is comfort in knowing he cannot scratch himself to the point of bleeding during the night.
I have met a woman whose teenage son has been diagnosed with the same disease. Reassuringly she tells me that her son is able to eat almost all the things they eat, and they just have to avoid peanuts and tree nuts. I am very excited about this possibility.
I hope that our story has provided some relief for other parents going through similar, if not the same thing. Even if there are not a lot of answers, there is comfort in numbers. I do believe that knowledge is power, and by sharing our stories and experiences we are sharing knowledge of what we have learned works well and what hasn't worked well. Through our experiences, we can begin to tackle these unruly atopic issues together.
Rachel Howard (Proud mother of two beautiful children)
Rachel and her son Clint are featured below.