10 days after NJH ~ update

As soon as we flew home from Denver, I had to hit the ground running. Dr.s appointments the following day, 2 kids with a joint birthday party we'd delayed until my return and 'Lou's new routine to get the entire household adjusted to.

The twice daily baths are a huge hit, as we were almost exclusively a shower-only family before. 'Lou has no less than 2 or 3 siblings volunteering for each bath - we are finally getting some use out of the giant garden tub we put in when we built our addition but never use!

I've managed to make it part of our daily routine that we start our day with his morning soak before anything else. He still sleeps in dry wraps over his hands and feet,

 and I'm only applying the lightest layer of Protopic in the areas that were the hardest to clear up - even though they are beautifully clear now. 

 The rest of his skin is being maintained entirely by the plain warm water soaks and then sealing it in with a moisturizer - as well as an extra lotioning with vanicream in the middle of the day, no matter what, no matter where. He has never ever looked so perfect. We want to change his name to Pinocchio, because he is finally a real boy instead of a sandpaper mache version.

No itching, no burning, no scaling, no flaking, no cracking, no raw spots, no infections. It feels like winning the lottery to think that I can possibly keep him from EVER being in that living hell again. 

Not to say that he doesn't still have some unusual issues.

 I took him to his pediatrician this past week and for some reason, he started breaking out in hives as soon as I got his clothes off in her office. 

His own version of flattened hives were popping up on his arms and belly and I have no idea what was causing it. He got itchy and irritable, but I knew that as soon as we got him out of there, it would clear up - and it did. 

It did elicit a discouraged phone call from me to our PA, Elizabeth, at NJH - who reassured me that this is normal for kids with his skin diagnosis. I have to reprogram myself not to worry about every single reaction and hive and outbreak. I used to feel like it was my mission to trace and track down every possible culprit and try to eliminate it from his world. 

Now that I know the reactions are just a matter of his skin lacking a barrier, I understand them. They are just getting into his skin and system and causing aggravation locally - but it doesn't mean he is going to have a dangerous or anaphylactic reaction. Instead of focusing on everything outside of his skin that I can try to control, I only need to focus on keeping his skin as protected and healthy as possible and eventually all those outside things will stop causing so many of these reactions. 

We are also all still half-expecting to get a delayed result of a genetic disorder that took a little longer to discover - as his local Dr.s and I keep saying, "But wait, if his filaggrin loss is acquired, how was he born with hives and swollen eyes and reacting to dairy through breastmilk?" I am keeping the September genetic results timeline from NJH in the back of my mind. 

His foreskin issue has improved 70% since returning home -and I am hoping once the treatment cream is discontinued, it will stay this way. We are following up with a local pediatric urologist for another opinion and prognosis this month, as well. 

Only a day after Elizabeth at NJH talked me down from the hivey pediatric visit, he came down with green snot and a terrible earache. It suddenly clicked for me that the hive outbreak and extra sensitivity was probably because he had a slight cold bug! What a change - only hives and itching from a virus that were gone 10 minutes after getting into our vehicle! 

Always before, a virus or bug in the house resulted in a huge eczema outbreak and prolonged setback in reaching baseline for his skin. I am not allowing his skin to break out like that anymore, because I am keeping his skin ultra hydrated and sealed with emollients and moisturizers and it is making all the difference in the world. With the added advantage of the nasal rinsing I have learned (along with my normal protocol of chiropractics for ear complaints and extra elderberry), his ear hurt and he felt warm/feverish for 16 hours and then we had it literally flushed right out of his system. And his skin never flared with his illness - beyond those few hives. A mumma could get used to this!!

We did try giving him his first ever Sunbutter and it provoked extremely dark purple, itchy rings around his eyes with tiny, hive-ish bumps.

 Still not sure how to handle these types of food reactions on my own, I've shelved the sunflower products for him until we can check with one of his local allergists, Dr. Doshi, to see what he advises.

Devang Doshi, MD

He is very familiar with the philosophy at NJH and is on board with 'Lou's care plan. We plan to do a food challenge for wheat one more time in his office on 8/27 -and then possibly more for sesame and salmon. 

We can't wait for our next appointment with his other local allergist, Dr. Bahrainwala.

allergy/bahrainwala

Dr. B has been seeing 'Lou since infancy and he is going to be just as excited as we are at 'Lou's perfect and much more functional skin for the first time in years.

I remember my trepidation about fitting his home care requirements into our busy household while still at NJH. I recall expressing my fears to the clinical social worker/therapist -Jennifer- while there.

Jennifer Darr - National Jewish Health

I said to her, "I am just trying to picture getting 3 soak & seals a day in and lotioning him every time he itches with a house full of 4 other kids, 2 giant dogs and everyone is breaking their bones constantly!"

She looked at me skeptically and said, "But what are the odds that someone is going to break a bone while he is in the tub?"

 And I thought, "This lady obviously does not have 5 kids." 

So this particular part of the update is just for you, Jennifer - in hopes that you are still checking in here now and then: Last Sunday as 'Lou was getting his 8:30 pm bath, our older boys were walking their dogs when I got a call that one of the dogs had dashed in the street and been hit by a car. I pulled him from the tub, wrapped him in his terrycloth robe, buckled him into his carseat, pulled the robe open, handed him the tube of vanicream in my purse and told him to put it all over himself while I drove to the scene of the accident.

 His carseat will never be the same, but I stuck to the plan as closely as possible!! Incidentally, the dog needs a hip replacement now - which is exactly how our luck was going before I flew to Denver, so now I feel like I'm truly back home. My only regret is that you did not offer a margarita therapy program that I could have utilized before jumping back into my life here. Maybe you can work on implementing this before we might make any return trips. 

I hope to write updates regularly, to report on 'Lou's progress. We are on pins and needles to see if he can really handle going to school. The principal at our school should be contacting me shortly to see if we need to do anything special to accommodate 'Lou's School Care Plan from NJH. 'Lou just picked out his first ever backpack

 and got the confirmation letter that he will be getting the same teacher his brother and sister had. He is so excited he can hardly sit still. 

Now I'm off to watch a family movie with all my kids, including my little guy who can laugh and smile and sit still and focus on something for the first time in longer than I can remember. 

~Just finished watching the movie with the kids and had to add another exciting detail to the update: 'Lou fell asleep in his "magic jammies" and pulled a heavy blanket on top of himself. I just went to carry him to bed and noticed that his face was shimmery and sparkling. Now, you might assume he was an "Eclipse" - version vampire what with the pallid skin, propensity to stay up all night and sleep all day, elegantly thin frame and dark rings around his eyes, but no - it was sweat! He is sweating for the first time ever!! We have never seen this child sweat, not even on the muggiest, steamiest, swelteringist of humid Michigan days. And if he had, it no doubt would have burned like acid on his cracked and ravaged skin. Now he's sweating away while he sleeps like a normal, healthy, hydrated kid whose skin is retaining moisture. Like I said, Pinocchio. 

:-)

National Jewish/Denver - Day 10

The end of Day 9 finished up with 'Lou screaming and howling as I applied his vanicream. No redness or irritation at all, just burning like fire on the back of his neck and small of his back with the application of the cream we've been using with no issues almost this entire time.

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!

Jennifer Darr - National Jewish Health

 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.

And one final helpful tip for the road. Open your mind. What have you got to lose at this point?

National Jewish/Denver - Day 9

Today saw 'Lou waking up almost completely cleared up from his breakout last night after the horrible stomach pains in the restaurant.

He was deemed clear enough for food trials today so we did his 3rd wheat trial, since the 1st two resulted in rashes. To my complete surprise, the 3rd trial produced no reaction! Finding this hard to believe, I requested a 4th trial. After a heaping plate of wheat pasta spaghetti AND wheat toast, 2 hours later, he still had clear skin!! To get back corn AND wheat is just beyond my biggest hopes - it's almost too good to be true.


Next we trialed lentils, which he loved. No problem with those, either. This means he has passed every food trial we have done. This means he can eat all the things I've been restricting for most of his life, except dairy, egg, sesame, tree nuts and peanuts . Truly, it hasn't really sunk in yet.

The fact that he got 2 rashes the 1st two times we gave him wheat shows me that his skin is so incredibly reactive and sensitive that even in a hospital setting during a controlled trial, it is very easy to mistakenly assume he is  allergic to something he is not.  I don't know how feasible it's going to be for his Dr.s in Michigan to do a food trial every time we think he is reacting to a food and also has a test result that shows an allergic response to it. I will have to save this for one of my questions in the final meeting tomorrow!

We also found out that his caloric intake for one day here was 1,769. The goal for someone with his skin condition is 2,100. The calorie count here did not take into account any of the human milk he gets. We know that the longer a woman lactates, the fatter her milk becomes. I have been breast feeding without interruption for 12 1/2 years straight now. I am certain that my milk supplies a good portion of the remaining 331 calories for him every day. When we are home, I am also certain that he more than reaches 2,100 calories daily as I am able to personally add a lot more fats and oils to his foods than when I am here in Denver.

On the one hand, the calorie count reassures me that we are on target and meeting the nutritional needs to keep him growing optimally. I haven't done a calorie count for him in over 2 years, so I had no idea what 2,100 calories looks like. Now I know, and I know we've been doing it. So on the other hand - he isn't growing or gaining even with the inflated calories he needs: why? Is this something that should improve as the condition of his skin does? Yet another question for the meeting tomorrow.

We've already seen an endocrinologist who recommended growth hormone injections for 'Lou's Short Stature/ Failure To Thrive. Dr. Leung here at NJH recommends following up with another endocrinologist for a 2nd opinion and thinks the injections just might be a valid consideration for 'Lou.

I met Dr. Erwin Gelfand today, who is the head of pediatrics here.

Vitals.com - Doctor Erwin W Gelfand, MD | Denver, CO

Erwin W. Gelfand, MD - National Jewish Health

He reassured me that they see results like ours all the time. He encouraged me to stick with the skin healing and protecting routines I am learning here. He invited me to stay in touch and call for advice any time after we leave. He also said that he enjoys and follows my blog entries!


I was able to follow up with our intake coordinator and let her know about one of the issues we've been having with achieving complete and total skin recovery: one of the hotel chains they recommend in their intake packet can not guarantee pet free rooms nor smoke free common areas outside.

 Marriott Residence Inns all take in pets (with a deposit) and allow smoking around the pool - a practice which has led to many a rapid fleeing of the scene for us! 


I had barely let her know when she informed me that the staff working with 'Lou had already brought this up and a disclaimer and plans to accommodate patients of NJH were already underway between the hospital and the hotel!


Our stay here has been so much better than I expected. We have reaped so many more benefits than I dared hope for. Especially worth treasuring has been watching all of the children together here. Scarred skin, nasal tubes in, constant tics, constant coughs, wheezing, fearful or obsessive about food and reactions, it just didn't matter to them. 


They had instant empathy and camaraderie. There was no teasing, no staring, no ostracizing and no making fun. They were open and friendly and curious and more concerned and solicitous of each other's well-being than any group of people I have ever seen. This is going to be one of hardest things to leave behind as I go home to and plan to start 'Lou in school and keep him home from the pizza and ice cream parties that exclude him.

As my thoughts turn toward going home, my helpful tip of the day is to find another, newer patient in the program and donate any extra special foods you bought and didn't use to them. I have a whole case of bottled water we didn't drink most of. If I hadn't found another NJH family in our complex, I would donate it here to the program in the hospital .


I will be sad to leave a lot of this behind, but my heart is stretching and yearning toward my other children more every day.

 It's felt like something was missing to have our children separated. I also can't wait to try his new skin and diet on at home !!