Asher Update

It's been an unusually quiet week...and we haven't had an Asher update in awhile. So...here it is:

I've been struggling to get Asher's next endoscopy scheduled. The protocol is for for him to be "scoped" every three months. Since Asher's last endoscopy was October 17th 2007, we're getting very close to six months post scope now. Unfortunately, my calls and emails to Cincinnati Children's go answered. So much for quality medical care.

Although we're still in the throes of pollen season, I think we have Asher's environmental allergies under control and he's back to feeling fine again. A nebulizer full of Pulmicort Respules (I love that name!), a nose full of Flonaise, and a netti pot to clear out the sinuses have been doing the job for the kid.

We haven't added any additional food into Asher's diet. Instead, we've added vitamins. Asher has been struggling with muscle weakness and shaky hands. The shaky hands - it really looks like the kid has Parkinson-like symptoms, which is pretty scary considering he's a mere 4 years old. It's been scaring the daylights out of me - watching my sweet boy acting clumsy and falling down all the time, unable to go up/down stairs, unable to keep up with his friends on the playground, and unable to hold his cup of milk in the morning because his hands are shaking too hard. Many of the other families with EE children mention that EE and mitochondrial disease are related - and that scares the daylights out of me. Honestly, all of this stuff has overwhelmed me. I just don't know where to turn. I talk with our pediatrician, who also doesn't know. I have been feeling like we're on our own.

So I've been reading. And reading. And while I'm not sure if this is the cause, I've learned that Asher isn't getting the nutrition he needs. He's only getting one-half of the recommended daily allowance of the most needed vitamins, like calcium, vitamin A, zinc, etc. Plus, there are tons of minerals and nutrients that are normally found in food - which aren't found in his elemental formula. I wonder if the lack of sufficient vitamins, minerals, etc. is causing the problems we're seeing in the kid right now. It seems logical to me that if your muscles aren't getting the nutrients they need, then they're just not going to be able to function correctly. Same with the brain.

I found some children's multi-vitamins made of non-allergenic materials and have been giving them to Asher, along with some zinc (to help him think), coenzyme-Q10 (to help with the mitochondrial-like symptoms), Three-lac (to kill the yeast), and calcium (because everybody needs calcium). Interestingly, he seems better after a mere couple of days on the vitamins. He also seems to be doing age-appropriately on the cognitive development work I've been doing with him. Perhaps it's coincidence or perhaps the supplements are actually working, but it's enough to make me want to continue down this path. We're off to find an integrative medicine doctor to help us identify the right course of treatment for this kid.