Today we are halfway through the Day Program here and reality is beginning to reassert itself. I had resolved to let go of my former hard-won, carefully constructed and time-tested paradigm about my son's multiple food allergies. Like an atheist in the foxhole, I was happy to embrace the religion being offered, if only they could promise to fix my son.
The allergists here believe that eczema (or, in 'Lou's case, possibly this genetic skin disorder) is the primary diagnosis in kids like 'Lou and that while they may truly have a few serious food allergies, to believe that they are allergic to the entire top 8 allergens plus a bunch more is just not realistic and not really possible. It's just the eczema or filaggrin deficiency, making their systems more irritated and reactive because their skin offers them so little protection - especially when flared.
The Dr.s here assured me that they would feed 'Lou all but his most serious allergens (dairy, egg and peanuts) and I would be amazed to see that he would not react to them. The reactions I was describing are just not normal allergic reactions. Hives within 2 hours, vomiting, breathing difficulties, facial swelling - *these* are normal food reactions. What I have been dealing with are exacerbated irritations to his improperly managed eczema or other skin disorder.
Yes, despite my many Dr.s letters certifying the severity and sensitivity of his supposed allergic reactions. Yes, despite my Dr.s letters quantifying the specific amount of one allergen he could be given before he reacted. Yes, yes, yes- in spite of my meticulous food journals, test results and allergy reaction photo albums. I might as well have left my enormous 6" thick, 3 ring binder at home, because it's all been a case of mistaken diagnosis.
You might think I'd be bitter and defensive about this, but honestly - it was a relief to consciously decide to give myself over completely to a new paradigm. Let them take responsibility. Let them prove their theories to me. Let me be wrong, let me be re-educated, just let my son be better.
And then when they told me about this genetic disorder for filaggrin deficiency, even though I didn't want to get my hopes up, it all made sense. How he can be one of the worst allergy cases the Dr.s in Michigan have ever seen, but have absolutely no GI symptoms, ever. No asthma or respiratory involvement, ever. All his problems are in his skin and his growth- which is directly affected by severaly damaged skin.
We were also sure at one year of age that he had Celiac Disease. He didn't. Then it was for sure EE. It wasn't. Then Glutaric Acidemia II would explain almost everything - but it wasn't. So I promised myself I wouldn't get my hopes up that we'd finally found the obscure answer here, after only 2 days.
But I did.
And then today we had our 1st Clinical Review. This is the first of two meetings where the Dr. in charge of our case and the rest of our medical team go over 'Lou's progress, treatment and goals.
His progress is suddenly a little uncertain because after the success of introducing corn back into his diet, he reacted to wheat the following day. He broke out in a rash and became itchy for the 1st time since reaching intact skin nirvana on day 3 here.
Only nobody was willing to call it a reaction because somehow it doesn't fit this facility's definition of a "true reaction". It happened at the very end of the 2 hour window and it didn't last long enough to be a real reaction. Which was fine with me, I don't want him to be truly allergic to wheat- I'd love to be able to feed him organic forms of it again.
So we did a food challenge with it again today. He reacted bigger and it lasted longer.
Now we can't trial soy like we had planned, because we have to wait for the wheat reaction to clear up. Which it still hasn't, almost 7 hours later.
And we have 5 days left to get through tuna, salmon, almond, white beans, pinto beans, kidney beans, lentils, chickpeas and sesame.
And I just feel the stiff and bristle-itchy tendrils of his familiar food allergy specter sinuously tightening around my heart again.
Still not willing to admit defeat, the Dr.s here are calling his reactions his "issue" with wheat, saying they don't know what might be causing "the flare" (um, wheat?) but we will give it a couple of days off and then try it again and see if it happens a 3rd time.
And I just have the worst feeling that we woke up the beast and now he's going to react to everything they try. And they are going to keep calling it anything but an allergic reaction and I am going to keep trying to see it their way and in 5 days, I am going to take my itchy and slightly flared but -very -moist -and -not -dry- or -cracked -at -all kid home and soon be back in the same boat that I paddled to Denver.
Can you tell that I found out today in the Clinical Review that the preliminary test for filaggrin deficiency came back normal? What kind of mother wishes her kid had a genetic skin condition? The kind that would rather deal with a devil she knows than one she doesn't, I guess.
It isn't the final answer on the filaggrin question, only a Cliff's notes version of what his DNA has to say. The Dr.s here feel very strongly that he has every symptom for it, but I work in black and white and don't like to dabble in ambiguity, so I've already decided he's not going to have it.
The Dr. has ordered the full-length novel version of his DNA where skin disorders are concerned, called the 'equome sequencing for EDC' test. We won't get the results from this until September.
In the meantime, I've learned how to minimize and control his eczema - at least in a hospital setting.
I've learned that you can call it what you want, but so far 4 of the allergens I have always eliminated for him are still going to harm him in some way if I give them to him. It's going to be up to me if I want to spend all my time and money soaking and slathering his skin and replacing his greasy, ruined clothes and wrapping him like a mummy every night so he can eat wheat and whatever else he doesn't have a "true" reaction to, or whether I'm just going to keep eliminating it.
I guess I'm getting prematurely discouraged because if he really doesn't have this genetic disorder, and we got his skin as perfect as skin can get, why is he still reacting to the things they said he wouldn't?
And if he truly does react to more like I am afraid he will, this question will only get more and more amplified for me. I asked it today and they said they didn't know all the answers about why eczema acts the way it does and it can be different for everyone. But I talk to all the other parents here, and nobody has a kid this allergic to this many things who ONLY has skin and growth issues.
They all have respiratory and GI symptoms, too.
I just feel so frustrated, like I keep brushing my fingertips against something and it keeps skittering away.
Thinking about going home in 5 days without knowing for sure what causes him to be so sensitive that he reacts or "flares" to everything is going to feel like driving a car with a faulty radiator. Yes, I can stop every couple of miles and fill it up with water or radiator fluid and probably get everywhere I need to go like that eventually.
But a human being shouldn't live life being topped off many times daily to get through a day. And honestly, everything they've taught me to do to make his skin soft and clear, I could have learned just as easily from a website with directions.
I need so badly for this trip to be worth it. Worth asking all my friends and family for the help and favors, worth leaving my other kids and hubby, worth losing 2 weeks of summer with my family and 2 weeks of pay from hubby's job. I just had my heart set on finally understanding exactly what is behind 'Lou's issues, not just maintaining them.
The team mentioned the possibility today of keeping him longer. They'd have to admit him for inpatient hospitalization because we can't afford any more hotel costs. I know if he keeps reacting to more than the wheat, there just isn't enough time to get through all his allergens. I should be grateful just to have corn back, but I have an insatiable need to know exactly where things stand - and why.
So...if you've been keeping up with this blog, this part is like the season finale cliffhanger. Will we find out that his overreactionary system has been activated and he's just going to keep reacting to every thing they try now...or will he be fine with soy if we can try it tomorrow and we can go home with several new foods back in his diet?
And then the extended season premiere in September - will it all finally be explained or take the easy way out like "Lost" and never tie up those loose ends?
Anyway, we also did seasonal/environmental testing today and his grasses were extremely high - which is not news to us, and he showed a small reaction to commercial dog allergen (I wonder what kind of dog they use for this test and if it is only one breed?)
We were slated to lose our room today, which would really be a shame for us. Our daily schedule is to get 'Lou up and get him there right out of the hotel bed.
The less time he's naked here, the better he does. We also stay late every day to minimize hotel time and exposure for him. Really, we are only promised a room overnight for the 1st night and they have held it for us for 5 program nights *plus* through the weekend. We are welcome to come sleep there any time he can't sleep here, which is not the usual plan for this program and would pose paperwork difficulties for NJH with our insurance company, yet they put our needs before those concerns.
Parents are supposed to provide for their own food, while the child's meals are covered, yet they have extended me the courtesy as a breast feeding mother that my meals are covered by the hospital also and served with 'Lou's .
We didn't have a refrigerator in our new room today and before I knew it, our nurse was wheeling one in. If anyone reading this blog ends up doing this program, you could never find a more devoted advocate for your child and phenomenal nurse than Sandy.
'Lou got her extension and calls her at least 27 times a day. From our room. From the play room. From the desk 2 feet away from her own desk.
She never loses patience, she never forgets a promise, she knows exactly how to teach different people different things. She knows which Dr.s are the best fit for which patients and she pulls all the strings to match them up, even against scheduling conflicts. For us, Sandy personifies everything good about this program, as well as just about every other professional there. But if people were lottery tickets, Sandy would be a 50 million dollar jackpot winner.
I still wish they controlled for cross-contamination better and hold my tongue when they speculate about what else could be causing 'Lou's "issues" after the wheat challenges (um, the nuts the girl was trialing at our table? The cow's milk the toddler spilled on our chair and his mother just wiped up with a dry paper towel?) but I promised myself I wouldn't be challenging or contentious (yes, I know - I hear you LOLing right through the computer) during this hospitalization and I said something on my 1st day and was assured it was carefully monitored, so I've had my say on the matter.
Now for my helpful tip of the day: they will tell you that the pots and pots of aquaphor are going to grease stain your clothing, but soap nuts gets it right out! I get mine at www.naturoli.com.
Other items on our agenda today included a therapy session and parent group.
And my small triumph of the the day - 'Lou had his 1st jello ever today - orange. He declared it to be "super awesome booby jiggly good."
Here's hoping for clear skin tomorrow and no need for an extended stay.