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.
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."