Saturday, June 25, 2011

owen iii

It's probably a good idea to read the first two installments on Owen before this one if you haven't already:
Owen ii

We have several lines of investigation going on with Owen, and a vague idea that even if one gives us an answer, there are other thing possibly present that can affect his health. If you're a regular reader of the blog, you'll know that the main things we are looking into at this time are genetics, neurology, and gastrointestinal.  He receives Speech therapy through Preschool Speech and Language, and Occupational therapy as well.

We have a Behavioural therapist that is helping us with toileting in preparation for school next year, although from what she has seen, she believes the toileting is not a behaviour problem at all, but one that stems from medical issues. She will remain with us for the long haul so that we can build toileting into his school experience. It is a great comfort to know that there is someone who knows the ropes that can help advocate for him.

From the beginning, we identified that his eating habits are the most important to understand and improve, being that he was barely eating anything when we first knew something was wrong. Without the nutrition going into the little guy, everything else was moot.

A couple of weeks ago, we took Owen in to see Dr. Justinich in Belleville General. He was very attentive, and gave us hope that we could get to the bottom of many of his gastro problems. We had already altered his diet to the point of preparing separate meals for him. He was eating squash and pear, broccoli, spinach, kale and carrots in smoothies and pancakes, and drinking Neocate in his juice. We had eliminated milk products to ensure that any casein (the protein source in milk products)was not messing him up as well, and because of those things we've had some great results.

Dr. Justinich introduced us to the idea that it could be EE, or Eosinophilic esophagitis. This is an inflammation of the esophagus that is often caused by, or made worse by, allergies and intolerance to certain foods. Food sensitivities are thought (by some) to have a hand in Autism, ADHD, and as we learned earlier this week, are part of the "package deal" in Ectodermal Dysplasia syndromes. So this was not news to us, and we had already eliminated milk from his diet.

Great, right?

Wrong. In order to know for certain if milk products were causing the condition of EE, we had to re-introduce milk products, even just a little a day, so that they could see what is going on in the upper GI tract. The reasoning is this: Owen had been on milk heavy Pediasure, and many months ago we traded it for the caloric substitute Neocate. It is a hypo-allergenic amino acid formula that is broken down, so it's easy to digest.

In Dr. Justinich's practice, they would use Neocate in conjunction with an elimination diet to heal EE. Even though we've had good results with removing milk products from his diet, we could have also inadvertently eliminated the inflammation and eosinophils, even though the underlying condition is still there. So to know for sure, we have to reverse our treatment so that the scope can tell us for certain that he has EE.  While they scope his upper GI tract, they will also be taking a couple of tissue biopsies, one to check for EE, and the other to test for Celiacs Disease.

I know this sounds like a step backward, adding milk and stopping the Neocate, and it felt like that to us also, especially after all the gains. Nobody was more aware of this than Jenn and I. But we did it. The difference in him since we did this is astounding. Even just after the first two days, the screaming meltdowns, the stimming-like movements, the stiffness of the body, all these are back. It's all been an eye-opener. We couldn't believe how much progress we had made until we saw it taken away.

We will find out on July 12th, and believe you me, on the 13th the milk will be again out of his diet, and the neocate back in, no matter what the result. We want our bright little Owie back!


Further installments:
Owen iv

 Jennifer's blog can be found here:
Cleverly Disguised as Cake

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