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.

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 !!

NJH - Days Off

This weekend was practically a blur with my sister and nephew flying in to visit from California.

We had planned to visit the zoo or children's museum, but my sister got a touch of altitude sickness! Which leads me to the biggest day off helpful tip of all: drink tons And tons of water. All the time!

We did manage to go out to eat (at watercourse - lots of vegan and gluten-free menu items we can tweak to fit our restrictions!) and experienced a hive breakout when I let 'Lou sit in the high chair. Removal from the high chair cleared up the hives. I LOVE the artwork there and 'Lou won over our initially standoffish waiter, Mr. Lucas.

Later, we ate there again for dinner and 'Lou experienced severe abdominal pains after eating a dish made of  corn and pinto beans.

 His pain was extreme and his distress genuine, so we packed up our meals and took him in to NJH to have him checked.

Dr. Fleischer's best guess was gas or cross-contamination as 'Lou has been eating corn daily with no reactions and he passed the pinto bean test with flying colors, as well. He said if the symptoms had included hives or rash, he'd be more likely to suspect a true reaction. He examined 'Lou for a rash and there was no trace of one.

By the time we got back to the hotel, he had one. On his back, belly and back of legs.

 It didn't appear to be spreading or even  itching, so i did his nightly back and moisture routine and took my sister to the airport as planned. 

He slept perfectly all night and woke up in the morning only slightly itchy and with the faintest pink areas where the rashes had been.

The hardest thing I am learning is not to assume every rash and reaction is a positive allergic response to the most recent food he's eaten. His skin is so permeable, almost anything in  his environment could be contributing. 

National Jewish/Denver - Day 8

Only two hospital days left and for all intents and purposes, I feel like I've maximized all the potential there was in coming here! We just have a few more food items to challenge and one more discharge consultation with the Dr.s.

 The gains we've achieved here have been well worth the visit, the drawbacks have been few. Today we managed to cram in 3 food challenges and 'Lou passed them all: pinto beans, tuna and navy beans.

Right at the end of the navy bean challenge, he tripped and fell on the carpet and got one hive on his wrist, but I knew it was a contact reaction. The Dr.s say those will continue until we can replenish the filaggrin in his skin by providing a replacement protective barrier long-term and prevent him from scratching.

 I can't help but wonder how many times I mistook such extreme contact sensitivity for a food reaction. I like to think I kept meticulous food journals, but I 've really seen here what a terrible state his skin was in. During the intensive 3 -baths -a -day -and -wet -wraps -for -6 -hours -daily phase, I saw his urine output increase to previously unseen levels. Even though he was hardly drinking much water, his skin was sucking up the moisture from the baths and wraps like a dried sponge. He was going pee every 15 minutes and it was as clear as water.

 I also see firsthand that eliminating foods based on positive skin or blood tests was overkill. We really felt we were seeing direct reactions due to how constantly his skin was reacting and flaring, but I see now many of them were inaccurate assumptions. However, taking wheat out a few weeks ago definitely improved his ravaged skin and it definitely caused reactions when trialed here despite it being a lower score on the skin and blood tests and being one that Dr. Fleischer said he highly doubted was a true allergy.

 Egg and dairy are literally off the charts with RAST scores over 100, so the Dr.s won't even consider trying to challenge those and peanut is just high enough for them to consider to be too risky also. Sesame is apparently becoming the new peanut in the world of food allergies, so 'Lou's sesame numbers are concerning enough that they might not want to let us try that one.  - But all the beans, lentils and even fish are apparently not a problem when his skin is well-protected.

 Corn was definitely one of his worst and most sensitive problems, but he accidentally ate some pineapple in citric and ascorbic acids a few months ago and we were amazed when he didn't break out afterward. I wondered then if he could be "growing out" (by which I mean changing how he shows his intolerance) of this allergy - but I was too afraid and conditioned to test it any further at home.

 I especially treasure finding out that our dogs aren't contributing to the problem!

 I value understanding the mechanism of what's been happening with him and I truly believe knowledge is power and I feel very empowered knowing how I can heal his skin. I have a plan in place that could potentially ensure that he never ever has to look or feel as badly as this last year for the rest of his life.

 Any of the times I've felt discouraged or homesick or worried about the treatment plan here, I've usually done a load of laundry around the same time and thrown in one of his beloved long-sleeve over shirts and seen the blood stains on the inside of it, up and down the arms and around the neck and on the back and I've resolved anew that this is the end of the line.

 I give it all I've got here and take everything I can possibly learn from it. I forced myself to open my mind. I tried things I wanted to balk at. I trusted people I had no reason to. And I think it paid off. I was respected in turn. I was afforded courtesies far beyond the normal scope of a hospitalization. I have made friends with staff here that I plan to stay in touch with long after we leave. I like to think I might have even taught people here a thing or two!

When I first got here and started to feel myself get defensive and upset and want to cling to my own thoughts on how to treat 'Lou, I had to stop and consciously think, "I've tried it my way for almost 5 years and he's only gotten worse and his diet has gotten more and more restricted. I can let someone else try for 15 days and see if there's any improvements before I decide I won't compromise or change anything." That was the day I put my Shea butter away and took off his hazel wood and amber necklaces and let them use their vanicream and aquaphor. Which (if you know me) speaks volumes.

 I am excited to think now how many stubborn cases I've worked with myself that might truly benefit from what I've learned. Before I came, we were thinking he wouldn't even be able to start school. Provided what has happened is not just a respite from being removed from Michigan that recurs when we get home and we can keep him this clear, he will be starting school on time!

 People are already asking me if this means I am going to start feeding him more standard American foods now. I know we've just learned how to manage his constant breakouts, but that doesn't mean we've healed or even addressed *why* he's literally been this way since he was born.

If nobody can prove to me that it is some kind of genetic metabolic or skin disorder, then I have to assume it is an acquired condition. And given what I now know about gut health and how it affects every other system and how truly harmful the standard American diet is, I am left to draw my own conclusions. I think that his GI tract was damaged or compromised while being formed in utero by my SAD diet of fast food and conveneient meals.

I think that since I had 5 babies in 7 years and he was #5,

my own ravaged gut and depleted body was leaking allergens and my own histamines directly into his bloodstream during the pregnancy while I ate my way through the first summer of us having a Del Taco in my city while gestating him.

 So, I believe with all my heart that he is predisposed to further damage from a bad diet. Both from his fragile gut and now his damaged and defenseless skin. This is a person who should never eat fast food or constant allergens. As long as I make the decisions for him, he will not have foods containing HFCS or other GMO-containing ingredients. He will never taste an item from McDonald's. Just because he isn't reacting to soy right now while in a controlled hospital environment without many stressors and with his vitamin D stores chock full because it's summer, does not mean he won't start doing so back in dark and dreary Michigan winters in a crazy house full of lots of kids bringing home constant germs and very little sunshine.

And even if I keep his skin from ever cracking and getting really bad again, I wonder if he can still become allergic to allergens very easily through his damaged gut by overexposing himself to them.

 So, we won't have to pay a fortune for compounded meds anymore, yay! If I'm really in a pinch and buying the kids snacks from whole foods on the way to the pool, now he can have something with citric acid or maltodextrin or soy, woohoo! But this isn't going to change my philosophy or views on the Standard American Diet and how GMO's are harming our children.

It's still completely unacceptable to me that he is allergic to dairy, egg, wheat, tree nuts and peanuts so severely with no family history and no genetic disorder to explain it. Not to mention Jovie's anaphylactic peanut allergy and Jonah's soy and peanut allergies. I have been mingling with the other families here for almost 2 weeks now and can't believe the number of older children and teens who are back here for the 3rd and 4th times.

The one thing I keep hearing over and over is the goal of eating McDonald's, or pizza, or Sonic or ice cream or whatever harmful mainstream crap food you want to substitute. I can't believe they aren't putting it together that they are breaking down any true gut healing or even forced healing from medications that they achieved here, by flooding their child's system with chemicals, toxins and allergens. No wonder they have to keep coming back.

I don't want for my son to have to come back, much as I respect and admire the staff here. The most heartbreaking are the mothers bringing babies in. Time without fail, they have been told breast feeding is harming the baby. They compare and discuss brands of formula and list symptoms from them as long as their arms, all the while regarding the healing milk from their own bodies as poison. It breaks my heart.

 Another lesson I hope to learn in advance is the emotional toll these issues take on their children. The little ones are fearful and combative. They resist baths, scream in fear of the water burning, are afraid of the creams and ointments, are terrified of the dr.s and too traumatized to cooperate with eating the food challenge foods. They have regressive behaviors and the parents tend to feel harried, frazzled, stressed out, fearful, helpless and obliged to be over permissive.

 The older kids tend to have emotional issues: obsessive-compulsive behaviors, nervous tics, panic attacks, depression, sleep issues, peer issues, grade issues. Being a mom who practices attachment parenting and especially normal-term breast feeding gives me a unique perspective. In the "coping" classes, they teach us that our children often scratch or complain of allergic symptoms to control and manipulate us. The dr.s and nurses correct 'Lou sternly when he scratches, as if he were misbehaving rather than experiencing a symptom.

It was hard for me to speak up as the only person with this point of view, but I had to say at one point, "Do you really think that a child still being breasted at almost 5 years needs emotional attention so much he has to fake symptoms for it?"

 So yeah, like most other places in this country, the philosophies here are not always AP- compatible. I chose to take what works for us like Bilbo Baggins with the Ring and run with it. I only really shared in one group in an impassioned and spontaneous reply about how we handle the rude comments of others about our children's conditions.

For me, I was restrained and politically correct. For one other mother in the group, I guess not so much. She looked at me chidingly from the lofty heights of her 14 years of repeat visits to this hospital for her child and said, "You sound angry. Anger is poison, you know."
I regarded her with genuine surprise. I truly delved into myself and tried to honestly examine the emotions I'd been trying to express. Finally I said simply, "I'm not angry. I'm determined."

National Jewish/Denver - Day 7

The theme for our day today was foreshadowed by an experience we had first thing in the morning, on our way to the hospital. As we idled at a long red traffic light beside the curb with all our windows open to the bright and sunny morning, our little rental car filled with the acrid yet heady scent of marijuana.

 I looked out the windows by the street and saw a shaggy large man sitting right on the curb we were parallel to. He was just rising to his feet and had a joint in one hand and a bundle of marijuana like asparagus in the other as he sat in front of the medical marijuana dispensary.

 "Your cig-rett is sure stinky!" exclaimed 'Lou . The burly man called back as we pulled away, "This is good medicine, skinny little man - you should tell your mama to get you some, you could use some munchies!" All this time and money spent at National Jewish Health when Big Burly Man at the Colfax Street marijuana dispensary had the answer all along! ;-)
(He obviously has never seen 'Lou eat, though - not even double mummy wraps can stop him!!)

 Dr. Leung came to see us at 9 am.

 Ever since his last appointment with us when he said 'Lou needs to be eating 2100 calories per day, I've been very frustrated that my requests to log and calculate his caloric intake have been disregarded or forgotten. I haven't done a calorie count for him in over 2 1/2 years and have no idea what 2100 calories really looks like in relation to a kid his age and size.

What better time to gauge how much he's eating than when he's in a controlled environment like the hospital, and getting almost all of his meals from one location?

 By yesterday, there was still no plan in place to track his calories despite me asking several nurses. I finally just got a sheet of paper and started listing every single morsel or drop to pass his lips. Sure enough, Dr. Leung opened his consultation today by saying that now that we have 'Lou's skin under control, we need to address his history of growth issues.

He is less than 3rd percentile for both weight and height at this time, despite recently having one of the biggest growth spurts of his life. I submitted my food log to his assistant and hope to finally have a calorie count tomorrow. I am very curious to see how his normal intake measures up - sometimes this little 29 lb boy eats more than his 180-something- lb, 6' 2" father !

 Dr. Leung recommends seriously considering the human growth hormone injections we've already had recommended for 'Lou and encouraged us to seek a second opinion on the matter when we return to Michigan.

 Dr. Leung also explained that although 'Lou does not have the genetic variation of filaggrin deficiency, he has every indication and manifestation of having the acute/acquired version of filaggrin deficiency.

Evidently, a minority of people with 'Lou's issues can also lose their filaggrin (a protective protein barrier in the skin) they suspect from having prolonged severe eczema and excessive scratching and infections which breaks the skin and protein barrier down and results in inflammation that also helps to erode the filaggrin, though they aren't exactly sure yet why it happens to some severe allergy and eczema sufferers and not others. Scientists claim peanut allergy'gene flaw' link - 03/11

 As the Dr. spoke, I imagined a thin spiderweb-like network trying to form just under 'Lou's skin. Then I imagined his fierce and relentless scratching and digging and I saw the filament-like threads disintegrating and falling apart and his skin swelling with fluid and breaking out in bumps as the beneficial protein disintegrated and inflammatory chemicals came rushing to the spot he was damaging with his scratching, resulting in bumps and hives like he always seems to make worse and cause to spread with his violent scratching.

"...but this is really really good news, that he doesn't have the actual genetic defect for filaggrin null aberration, because this means that he can outgrow this! In maybe one year's time, with the things we are teaching you here, he can replenish his filaggrin protein and have normal skin."

Even as he was talking, my mind was racing and dropping puzzle pieces into place. This would explain his atypical presentation of eczema in unusual places and at such an extreme sensitivity, as well as his continued reactivity to contact with any irritating/allergenic surfaces despite his now perfect and completely intact skin. And why the hives and itching stop as soon as you get him away from the irritant/allergen.

They aren't true IgE-mediated reactions that might lead to anaphylaxis, they are isolated to his damaged skin that can't keep the bad things out. The rest of us have laminated skin, he has rice paper skin. It's really NOT all true food allergies!!!

I flashed back to talking to his future kindergarten teacher and Principal about him starting school this Fall. She is the teacher for his anaphylactic-peanut sister.

 I remember trying to explain his 'transient reactions', as I call them: "His skin doesn't protect him, but the hives and rashes don't turn into anaphylaxis, respiratory symptoms or GI symptoms like his sister's do. If you get him away from whatever is in contact with him and causing the hives and rashes, the reaction will clear right up." It was so opposite of what we told her about his sister's allergy, that I felt bad for having such polar opposite and confusing allergy children - yet still relieved that I don't have two with contact anaphylaxis! As far as we know, he'd have to actually eat a quantity of egg, dairy, peanuts or tree nuts to have a serious reaction.

I thought of the Post-It with titles for blog articles I jot down when inspiration strikes. The top of the list was for a story I never quite got to about his first hospitalization here in Michigan, when his siblings all caught Strep in their throats and he got it in his skin.
"The illimitable strength of the boy with hyperpermeable skin."

I thought of all the times he needs stitches (4 boys here, did i mention that yet?) and how the ER docs are always completely amazed that the numbing gel sinks in and turns his skin bone white and totally numb in less than 5 minutes when it should take 20-30.

I thought of how I can't use anything but pure zinc on him for a sun block as everything else burns him like fire and gives him a nasty rash. 

I thought about how he got his first wart recently- (something that people with the genetic mutation for filaggrin null aberration will be prone to for their entire lives, along with cold sores, fever blisters, etc...) and how the dermatologist said it was super tiny and only dropped one little drop of the freezing liquid on it and yet now he looks like he has a 3rd degree burn the size of a nickel.

I thought of my daughter, who has anaphylactic peanut allergy. By age 5, she'd had 4 anaphylactic episodes, the last of which happened AFTER she passed a medically supervised food challenge and had eaten her 3rd dose of peanut butter to keep her immune to it!

 When we see hives on Jovie, it means anaphylaxis is on the way. I've been comparing 'Lou's hives to hers all this time and thinking that if it causes hives on him, it can be as dangerous as her allergy is and I need to get that food item out of his life completely.

And then there's our 3rd son, Jonah. He had severe reflux and tested positive to soy and peanuts (as well as a lot of seasonal allergens).

 We completely removed soy from his diet, treated the reflux with apple cider vinegar and as long as he avoids soy, he remains 100% symptom free. If he gets an isolated accidental exposure, he gets hives. Just to soy. We habve a peanut free home and school, so I don't know what peanuts would do, but my point is, nothing causes hives for him except soy ingestion. It's consistent, it's predictable, it's only the thing we were told he's allergic to and nothing else. His skin is perfect 99% of the time, unless he eats soy.

 It makes sense that 'Lou would eventually develop some true food allergies to the bigger and badder proteins in the worst of the top 8, like dairy, egg, peanuts and tree nuts. I know these allergies could lead to true anaphylactic reactions and would never allow him to ingest them, but now at least I feel like I understand how they happened.

I thought of our other child who'd had severe eczema. We battled it for over 2 years of his toddlerhood until he finally seemed to outgrow it. I've compared 'Lou's eczema to his so many times and not understood why I can't get 'Lou's under control when I did with my other son's. Removing dairy, frequent baths and slatherings, heavily coated footie jammies with aquaphor - why didn't any of this work for 'Lou? Now I know! Our other son had filaggrin and 'Lou didn't!

One piece of the puzzle that still doesn't fit is why 'Lou appeared to be born with skin problems if he doesn't have the genetic version of this issue, but the acquired one. By 2 days old he had strange, flattened hives all over his body, red spots and red, swollen eyes.

 I asked Dr. Leung why he was born with skin issues but he couldn't say. He says not enough is really known about these skin disorders yet and filaggrin deficiency is still in the early stages of being researched - and they still don't even know exactly what causes "normal" eczema yet, either.

While there is a new cream on the market that actually contains filaggrin and which may help to replenish it, it can be costly and long-term use of emollient rich and barrier-type moisturizers can help to completely heal his skin in about a year, provided he doesn't have any major flares or setbacks and we work constantly at home and school to distract him from scratching.

 I am over the moon to have an explanation that he can actually grow out of, get over or get cured of!

Another thing I love is that Dr. Leung remembers and agrees with my stance against excessive topical steroid use. He's only ordered the bare minimum use of the weakest prescriptions during our stay here and is adamantly opposed to any oral steroid use for skin flares, ever.

We did a challenge for almonds today, which 'Lou passed though he did not love eating them. He gagged for the first time that I've ever seen but finished all 3 servings with no reactions.

   There was another parent group today, but I missed it due to hovering for the almond challenge. One of the kids in our program had to be transported to Denver Children's hospital today after a food trial due to a severe reaction, so a lot of us were skittish and helicopter-y today!

 I went shopping tonight for his next food trial foods and stocked up for this weekend as my sister is coming from California to visit for 2 days.

I hope to take advantage of some of the free fun options for NJH patients like the zoo. Tomorrow's schedule holds nothing but food challenges for 'Lou, so we are hoping to begin as soon as we arrive. If we start early and he has no reactions, we could possibly fit 2 or 3 foods in. I've decided I do not want to extend our stay, so I'm willing to put in extra hours when I need to.

 The helpful hint of the day is about pressurized items and the high altitude. If you don't like wearing your tube of soft lip gloss up a nostril, open things pointed away from yourself!