Tuesday, October 16, 2007

As usual...

I haven't updated this forever!!

I just got back from Cleveland last week. I went there with my friend Anna. We took Emeric to see a specialist there since we've never gotten any real answers from Mayo. This guy we saw there is a pediatric neurologist but he specializes in metabolic & mitochondrial disease, which were two possibilities we felt might explain Emeric's issues. We're still waiting on test results from there before we have any real answers but he was able to narrow it down to either a genetic disorder or metabolic/mitochondrial disease. If he has a genetic disorder there's 20% chance we'll ever find out what it is or have a name for it. There's no treatment for them and there's such a wide array of disorders that you really have no idea what the progression will be, unless you're able to give it a specific name. If he has mitochondrial disease(which he does have some soft signs of) there is no cure. There is treatment and again it's hard to know how the disease will progress. I think I've posted this site before but if anyone is interested in finding out more about mitochondrial disease you can go to: http://www.umdf.org for more information.

Recently Emeric has started this new thing with his eyes where he's not tracking well and seems like he has a hard time focusing. His eyes also jerk back and forth quickly and it doesn't seem like seizures to me. He has an eye exam on Thursday and although he's had a normal eye exam in the past since this is new the neurologist wants him seen again. If it turns out he has another normal eye exam than we'll have to look at possibly doing another MRI or EEG to determine if it's a problem with his brain. It scares me to think this might be part of the progressive nature of these disorders. Hopefully we'll know more soon.

The girls are doing well. Neither of them were real thrilled that I was leaving for a week and Kylie wanted to know why she couldn't come with. I fear they're going to start resenting Emeric and the fact that he "always gets to come with" and the girls don't. I sure hope not. Today we had to go to the clinic to have Emeric's med level drawn and Kaydence kept asking why she couldn't have her blood tested. LOL They fully know what to expect each time we're at the clinic and they leave with loads of stickers each time.

Jake is still keeping busy with construction and it looks like he'll have some indoor work for at least the next few months so that's an answer to prayer!

Well, I'm off to do all the things that I have to wait until the kids are in bed to do! :)


Vera said...

Hi, Do you mind sharing where is was that you were in Cleveland? Was it Cleveland Clinic? Did you see Bruce Cohen?

Nicole said...

Yes, it was the Cleveland Clinic. We saw Dr. Parikh, he works under Dr. Cohen.

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