I almost got back on the ipad and blogged an addendum entry - but I'll tell the truth, it gave me such a pessimistic and negative attitude to see this hated symptom back right before we are due to leave, that I thought it would be best to wait and see if my perspective changed with a good night's sleep. The only reason I could imagine for the burning sensation to be back in his skin was that I had forgotten his terry robe at the hotel and wiped him with a hospital towel for his morning soak and seal ... OR the wheat we'd bombarded him with all day.
But the thinking about true food allergy reactions here tells me that this would not be a true food allergy reaction, so I shook the thought off (even though my food diary shows me that the entire time we trialed wheat over this last spring, burning skin was one of his worst main symptoms).
We celebrated after dinner by splitting a wheat-laden rhubarb and berry tart from Watercourse.
For the first time in Denver since getting his skin so cleared up, 'Lou woke at 3am, scratching and digging at his hands and arms through his covered jammies.
Day 10 started with 'Lou's morning soak and seal in the hospital and revealed a reddened back of his neck, small of his back and some new, harmless looking bumps scattered across his back. Given the issues with our hotel room, none of us were very concerned.
I got him dressed and we had breakfast: his normal daily corn flakes, -2 bowls - a bowl of cream of wheat and his first ever bagel!!
With this being our very last day, we also wanted to try and get his very last food trial items in: salmon, kidney beans and sesame - so we gave him his first dose of salmon. He was already itchier than usual this morning and Nurse Sandy and I were constantly redirecting his scratching, but after breakfast and the salmon, it intensified.
During a skin check, Sandy noted a red flush creeping up the small of his back and halted the 2nd dose of salmon we'd been getting ready to administer. We kept a close eye on him and as the red patchiness faded from his back, he got welty red marks up the back and side of his neck. Next they crept up to his cheeks, this time with defined hives.
Of course at 1st glance it looked like a salmon reaction, but all of my instincts were saying it was the wheat. It was such a tiny amount of salmon for such an all-over-body reaction, but I expected resistance to the theory of a cumulative delayed reaction to wheat from the staff as he's passed 2 of the 4 wheat challenges and this just didn't fit their mold for true food allergy reactions. Much to my surprise, the PA (Naomi) and Nurse Sandy readily agreed that they had a feeling it was the wheat he'd eaten right before the challenge, too.
Even as this deflated my hopes for a perfect food-trial record, it really increased my respect for the program and staff here as I'd expected them to stick to their guns and claim this couldn't be a "real" reaction as it didn't have a history of consistency during their food challenges. I did wonder if that might be due to my agreeability in using mild steroids and protopic to squelch reactions in order to keep his skin clear enough to get all the challenges done in the timeframe we had, but I prefer to think they were being as openminded to my theories as I have been to theirs.
Naomi was concerned about the facial hives and wanted to administer benadryl, but I asked if we could wait another 10 minutes or so and see if they got better or worse. The one thing about 'Lou's reactions is that if you remove the irritant/ allergen, he clears up really fast, except with his previous corn reactions, those took 2-3 weeks. None of his reactions has ever appeared to be anaphylactic, so I wasn't too worried this time. Sure enough, in 15 minutes he was running around, terrorizing the patients and staff equally with no more red patches or hives.
At any rate, we did give it some time and retry the salmon to see if we could rule that out as the cause, and while he didn't get any actual hives or welts, his skin was still so patchy and red that it was hard to tell if it got worse after the 2nd does of salmon, so for now they decided to keep restricting both salmon and wheat. He was also too reactive and flared up to try kidney beans or sesame.
So, his final restrictions are: dairy, egg, wheat, peanuts, tree nuts, sesame and salmon. I can trial salmon, sesame and kidney beans with a local Dr. if I choose to.
Even as I'm actually sort of relieved he reacted to wheat because it fits with what I have observed and thought was going on with him at home (so i'm not crazy or wrong about it *all*), I'm a bit more confused about the theory being taught here. I was told true food reactions were consistent, happened w/in 2 hours of exposure/ingestion and happened every time. So i'm not sure how they categorized the overnight discomfort all those hours after ingestion along with the delayed rash, the 1st 2 failed challenges where one happened almost exactly 2 hours after he ate it and both were more of a rash than hives, and the burning skin. Maybe they would just call those things a sensitivity to wheat? But they led pretty rapidly to a potentially serious reaction with facial hives, so I'm not sure that I care whether they would have classified it as a sensitivity or true allergic response, it's not something I would have kept giving my child outside of a medically supervised environment. Which the staff here and I are in agreement on, so I guess what we call the reaction doesn't really matter - but I still like to try and fit things into their proper niches when learning new concepts, pigeonholer that I am.
Which begs the question, if i think he's having problems with any of the other foods, will i re-eliminate those, too? And *will* he start having problems when we get out of the controlled environment here?
What will he look like when the food trials are over and we're not using Protopic to subdue all the small outbreaks from the hotel room and food trials? I am eager to put to the test all that I've learned, and I see now that 'Lou is still not quite fitting the mold here, either. I do wonder if our long-term breastfeeding might be delaying and lessening some of his reactions - since breastfeeding is supposed to help prevent allergies in the 1st place.
I sure wish there were a study we could refer to!
Parents group was canceled today because there weren't enough parents to attend, so it was a nice chance to just hang out and socialize with the other parents over lunch. There was a terrifying episode of choking by a child and favorite hospital buddy of 'Lou's with EE. The grape was heimliched and gagged out in time, but it was a unique peek into what kids and parents living with EE have to deal with on a regular basis.
Back to what I was saying about the amazingly empathic and emotionally generous children here, would you believe that this little 10 year old boy with EE who choked during lunch time came right to our room when he was recovered to ask if 'Lou was okay and to apologize for scaring him?! He also asked 'Lou to use his choking as an example to always be so careful with eating his food! 'Lou replied, "Okay, but please never do it again - are you really okay?"
Since this was one of the longest-term diagnoses hanging over 'Lou's head, I have had the ambivalent experience of being so glad they don't think he has it, even as my heart leaps around like a trapped animal in a cage over these kids' panic and pain, because that so easily could have been (and potentially still could be someday) us.
Truly, what a wonderful idea to include a psychologist as an integral part of the program!
the grief and fear some of the moms expressed upon receiving this diagnosis had me welling up right along with them.
On the flip side of the coin, a beautiful little girl exactly 'Lou's age came in a few days ago. She had been diagnosed with EE without a biopsy and was down to nothing but rice and a supplemental formula for I-don't-know-how-long.
Just like us, her family had eliminated more and more foods over time due to allergy test results and skin reactions of rashes, eczema and hives. As of today, NJH has reevaluated her and she doesn't have EE, nor does she need to be on such a restricted diet. She's already trialed several fruits back into her diet! This story in particular was a hard one to leave, it was such a joyous thing to see this family receive such a wonderful gift - most of us were basking in the glow of the parents' joy like it was Christmas in August.
Our last day concluded with our discharge meeting. We were given a written home plan for how to continue caring for 'Lou's skin, including the entire step-down and step-up procedures for when he flares - and when he doesn't. We got written instructions and an outline for how the school will be directed to care for him with this condition. It is easily transferred into a 504 plan, should the school deem that necessary.
Don was able to conference call in and be part of the meeting to ask his questions. We were both able to ask all of our remaining questions. There to answer them were Dr. Spahn,
PA-to-Dr.- Leung, Naomi and
Jennifer Darr, LCSW.
The biggest of which was: Why was he born literally reacting to dairy and having welty, hivey skin if his problem is just eczema - are people usually born with eczema? Dr. Spahn said they really don't know much about the cause of eczema, but they are learning more every day about how to manage it. And no, people aren't usually born with the symptoms 'Lou was, but it's hard to say exactly what caused them without having all the details back then.
They did say that 'Lou is at slightly increased risk for developing EE, that if we can get his skin absolutely perfect and keep it that way for about 5 years, there's a small chance he could be around cats and we might be able to have one in our home again, that his terrible skin history alone does not explain his enormous appetite and poor growth, and that there is hope that he will "outgrow" all of this if we can keep up on his skin care plan and keep him in remission long-term.
I've asked every question I could possibly think of. I've complied and cooperated with every recommendation given (with the exception of seeing a nutritionist/ dietician which A. Our insurance won't help pay for and B. We just don't need) and now I am ready to get home and try this new lifestyle out in the real world!
I was trying to cram it all into a nutshell for Don and it came out kind of like this: "All along we've thought the food allergies were the central issue and the other problems were satellite concerns around that giant planet of a diagnosis. Now we're being told that his skin disorder is the giant planet and the food allergies and growth and everything else are the satellite issues. Treat the skin disorder and get it under control and all the other issues should improve dramatically or vanish." It goes against everything I've believed for the last almost 5 years, but I am committed to giving it my all before I decide it won't work.
'Lou is going to miss Nurse Sandy and Sonny the receptionist the most. One of his favorite things was to play peek-a-boo around the partition at Sonny's desk.
My helpful tip of the day is this: when the nurses show you proper saline rinsing of the sinuses and tell you not to try it without the little salt packets, listen to them. I ran out of the packets this morning and just used the plain distilled water and it felt like someone injected hot magma into the rear hindquarter lobes of my brain.
