Re: characteristics of complex 1 defiency- help

[Guest guest]

Hi there

I know you are relieved to have a diagnosis finally and on the other hand have a ton of questions and fears.

Complex I is considered by Shoffner and many of the docs I heard at the UMDF conference to be the most common type. Of course, the real question is if it just tests better or whether it is the most common. When I came to this group years ago, someone told me that if you have to have mito, it was the one to have--you can take that for whatever its worth!

I have heard this a number of times and I believe it to be true...you can stick ten kids with Complex 1 in a room and they will all be affected differently...you wont find two that are the same.

The brain issues are particularly concerning...because there is limited info on brain and the drs have so many limitations in treating brain issues. My theory on this ('s brain was SO affected--he went from being a normal 6yr old to mentally a 3 yr old in about a year)....be proactive. Often the medical community wants to wait until there is a huge problem before doing anything about it.,..I think its better to do something as soon as you see a problem...or even if you anticipate it. But that' sjust my opinion...you can take or leave it.

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!

[Guest guest]

Hi suzanne,

My name is Ange and my daughter who just turned 5 has Complex 1 I am willing to tell our story if you are willing to listen and give insight as to what we are doing for her and how we look at life. Please write back if interested.

Thanks

Ange

-------------- Original message --------------

Ok! Finally have some results on my daughter ( zoe 2.5 years) and her biopsy. The conclusion is a complex 1 deficiency.

Found some basic characteristics on the UMDF website, but it is still confusing. Once again,we don’t know a lot – which I know is common.

She has some brain issues present since birth, underdeveloped cerebellum, left front lobe malformation and some myelin damage which so far has not resulted in a seizure. There was a mild proliferation of mitochondria…

SO here is my question. Am looking for some real nitty gritty answers from those familiar with complex 1. Is one complex worse than the other- has anyone else been able to get a prognosis on a complex 1 with risks etc, specific to this type? The medical thought this far is she is hopefully mild-moderately affected with the biggest issue being her brain issues , but with so much unknown I wonder if anyone else got any worse case scenarios for complex 1??

THANKS

Suzanne

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