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.

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.
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.

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. 


Jennifer @ 20 something allergies and counting...down said...

Jack, I love love love this update! I'm so glad you and 'lou are in such a good place right now. Keep it up mumma and we might get that playdate in this century. ;)

Christine said...

I have been following your posts for a long time now. I could feel your excitement about him sweating and it brought tears to my eyes! Sometime the littlest things are so joyous. I am so happy for you all that things are going so well at home!

KSB said...

I am so very excited for your family. I admit to being a tiny it apprehensive every time I see that you have a new posting, because I am afraid you will have bad news, and I am always so thrilled to hear that things are even better. I keep wondering - what does Lou think about all this? I presume that he can hardly remember not being sick and itchy (your comment about him flying on the swing so that air can calm his skin - ohh, that just hurts my heart!). What are his comments on the process? Has he begun to forget what it felt like to be so inflamed and raw?

Unknown said...

Wonderful news. I'm so happy for Lou! I've been reading your updates for months and I'm so happy to hear that things are looking up. It's a good reminder to not allow our brains to run into overdrive after a hive outbreak. I need that reminder myself. Thank you for sharing.

jack said...

ksb, thank you for asking! i will go back and add that part into the blog update- now that you bring it up, i'd totally want to know, too if i were reading about him for so long!

Suz said...

I have been following your blog for awhile now, and just checked back to see all the good news and wanted to offer congratulations and heartfelt happiness for you and 'Lou. Good job Mama for taking this journey to NJH with him with an open mind/heart! While we don't have allergies in our family I learn so much from you (I am an LLLL in New York) we took our special needs little one to Denver for a transformative treatment a few years ago, and it changed our whole family...

Laura said...

I just caught up with your postings on your trip to Denver. Thank you so much for going to all the trouble to document the details; you are helping so many people in addition to your own family through your hard work, dedication, and intelligence! We, your readers, are cheering you on.

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