This part of the journey, started with a fundraiser. There was an outpouring of internet love (and money!) to send Davis across the country for the treatment he needed so that he had a chance at healing. Then came the nerves and excitement of a mama thinking about all that was to come. Then a week of real progress and now this a final post (for now) in this series.
Paige and Davis are home. Paige wrote this post the night before they flew home to the loving arms of Davis' big sister and daddy. Here is the conclusion of this chapter of their story and their experience at National Jewish Hospital in Denver. Please join me in welcoming them home. ~Mama Pants
But I think I’m getting ahead of myself. A lot of you probably want to know what exactly they do here at National Jewish that is so life-changing that we’d travel all the way across the country for it. So I’m going to explain the best I can.
The program starts with intensive skin treatments. People with Atopic Dermatitis (which is a more specific name for the kind of eczema these kids have) have a problem with the barrier in their skin. For you and me, that barrier seals in moisture as well as keeps out foreign particles. Without that barrier, the skin not only gets dry, but it also is open to things in the environment that inflame and irritate it, and that get into the blood stream and trigger the immune system. So the first step in treatment is to put moisture back into the skin and the second step is replace the barrier to keep the moisture there and everything else out.
When I take him out of the bath I immediately pat him gently with a towel, making sure not to let his skin dry completely, and within three minutes I have to have him covered in either cream or steroid ointment. And when these folks say ‘apply steroid’ they mean slather it on with a spoon. I’m not kidding, they use plastic spoons and put a quarter-inch thick layer of steroid on all the red and inflamed areas (the spoons prevent contaminating the medicine with bacteria from your hands). My jaw dropped when I saw how much medicine they were using compared to the thin layer I’d always been told to apply. And on the rest of his body we put a thick layer of Vanicream, which is their recommended moisturizer (it comes with a pump top- again, to help prevent contamination).
So that’s the Soak and Seal treatment, which is something we worked down to doing once per day and will continue to do each day after we go home. While we are here, and at home when he flares up, the bath is immediately followed by a Wet Wrap treatment. While he’s bathing I gather up a set of cotton pajamas and four men’s tube socks and set them to soak in hot water. After he’s greased up like a pig I put a wet tube sock on each arm and leg- they go all the way up to his shoulders and most of the way up his thighs- and then put the wet pajamas on over that. The wet stuff is covered by a dry fleece onesie and dry socks on his hands to keep him warm. The first several days we also wrapped his face with wet gauze that went all around his head, over the bridge of his nose and across his upper lip. We covered that with a dry surgical sock with a hole torn in the face. Then we wrap him up tight in warm blankets and I cuddle the heck out of him and let him watch whatever he wants on television because, as you can imagine, it’s really not very comfortable to be slathered in lotion and have wet pajamas put on you (an actual quote: “I don’t WANT to put those on. They’re FREAKING wet!”).
Meanwhile, as the skin healed they were also doing a lot of testing. A blood draw to check his overall health and to run RAST tests, which are the blood allergy tests, took swabs of his skin and nose to check for bacterial colonization, and once the skin on his back was cleared up they did food and environmental allergen skin prick tests. They tried to do some asthma diagnostic tests, though those are difficult on a kid as young as Davis.
The first results that came back showed that Davis had super high levels of IgE in his blood. IgE is the antibody your body produces when it is having an allergic reaction or responding to parasitic infection. Normal range for a child is something like 0-400 IU/mL, but Davis was at nearly 7000. This elevated level is common in kids with eczema, particularly after a bad flare, because as I mentioned before the skin barrier is broken. His immune system is constantly being bombarded THROUGH THE SKIN with allergens or even just irritants that are treated like allergens. His body starts working overtime to fight off what it thinks is attack and it just makes the whole cycle worse. He starts reacting to things he isn’t allergic to. He actually BECOMES allergic to new things. This MAY be why he had so many allergies as an infant, though no one is sure. It’s kind of a chicken or the egg situation. What came first the allergy or the eczema?
At any rate, the high levels of IgE make the blood allergy tests less reliable because it causes high rates of false positives. So we have to rely more on the skin tests, with reference to the blood tests in certain cases. For example, Davis’s blood test showed extremely high reactivity to egg and dairy. His skin test also showed a strong reaction, and our experience with accidental exposure to milk was severe enough that they decided it wasn’t safe to trial either of those foods. On the other hand, his skin test showed only a very small reaction to wheat, soy, and many other foods and the blood tests weren’t nearly as high as milk and egg, so we determined some of those would be safe to try.
They prioritize introducing foods that would make the biggest difference in nutrition, ease of feeding him, and making him feel included in the social activity of meals. Obviously, we went for wheat and soy first. I was thrilled when he passed both, but not too surprised. From there we tested garlic, which is in so many processed foods and is difficult to get away from, and then green peas, which he’s actually expressed that he likes so it would be nice for him to be able to eat. Both were also passes.
The next two were a bit more of a concern because the blood test levels were higher, but we tried hazelnut and sunflower. Both are potential peanut butter replacements, good sources of protein, and possible cross contamination issues, so it was nice that he passed both. These were the first where we saw possible reactions- he got a little red and itchy during the challenges so we paused for a while and when it cleared up we tried again and watched closely. Both ended up being passes, but I admit it made me nervous so I’m probably not going to go slathering nutella on his toast every morning. Still, he showed no signs of anaphylaxis and it was considered a pass, so it’s not something I feel I need to worry about being in his foods in small amounts, which is one less thing to worry about.
Every time I see his new list of allergens I smile. IT’S SO SHORT! Dairy, eggs, sesame, peanuts, cashews, and pistachios. That’s all. I can SO handle that. It makes me giddy just to think about all the new things he can eat. I’ve been going a little nuts (pun intended) giving him new things this week and I keep coming up with more possibilities.
He does have a few new diagnoses. He has a number of tree and grass allergies, so we’ll have to be extra careful with his skin during the blooming seasons. He also has asthma triggered by cold weather and exposure to viral illnesses. He’s on a controller medication and thinks his new inhaler is SO COOL. I am thankful someone finally realized that it’s better to treat it now than to wait until he has another bout of pneumonia or takes another ambulance ride. His skin is colonized by staph, which is fairly normal but a concern with a kid with eczema because it has the potential to get out of hand so easily. It’s something we will be keeping a close eye on, but with our daily baths and new sterile practices with his lotions and medicines, it shouldn’t be an issue.
So now I have a plan. I know what to do to keep his skin from getting so bad. We have our maintenance routine to move forward from here and several tiered steps of treatment for when he flares up (and he will flare up on occasion, but hopefully we can minimize the effects). We have a plan to share with his school for what they can do to help and pages of documentation to share with his doctors so they can continue his care seamlessly.
I think, most importantly, I have peace of mind. I’m doing everything I can do AND IT’S WORKING. He actually FEELS BETTER. He’s excited about going back to school and telling his friends he can eat sandwiches. SANDWICHES is what this kid is happy about! We can’t wait to get home and start our NEW LIFE. Because really, that’s what this is. The last four and a half years have been one trial and error and disappointment and failure after another. It’s been day after day of just getting through the day and then getting through the night; accepting that our standards for how comfortable we can make him have to be set lower. Well, they don’t have to anymore. The bar has been raised. We can’t cure him, and we didn’t give him a new body, but by god we sure as hell made this one better and that’s so much more than I thought was possible.