Re: characteristics of complex 1 defiency/Ange

[Guest guest]

Good Evening.

Been really busy and in my opinion, there is no "good" mito disease. With that said, will give a brief with my son JD. His dr here gave us copy of a study done and 16 was the oldest. Thankfully, JD turned 17 a couple of weeks ago.

He has complex 1 and Dr. Whiteman at the Mayo Clinic is looking for something else going on with this. He still has testing that is inconclusive.

Of course when he was younger, all of my concerns was brushed off. JD went from riding his bike in 2nd grade to needing a wheelchair for distances by 7th grade. He went from running a temp all of the time to now sub-normal temps. He sleeps about 14 to 16 hours and when he sleeps in the excess, this is a trigger. It seems like about every 6 months there is a change. Not sure if this is recycling of cells or just the illness.

It is important to have a doctor to listen to you as the "expert" on mito since you are with him most of the time. Thankfully, we now have a doctor that is trying to understand and most importantly listens.

The battling with the schools is not worth my child's health. Yes, an IEP is supposed to be a federally-binding contract - hogwash.

JD has not been to school in 2 years and Dr. Whiteman attributes to JD doing ok to not going to school. He doesn't have the stress and most importantly he is not around all of the germs in school. We all get the flu shot and of course try to not to have people around sick - not always easy if other kids are around I know.

JD has been taking the mito cocktail designed exclusively for him but isn't helping. JD's muscle tighten up so we watch any weight gain. His blood pressure was running 80/40 and drinking propel, the less caloric version of gatorade has helped with raising his blood pressure. JD has to drink more than normal to keep from becoming dehydrated. JD. also had a pneumocal shot. His blood work is testing each month to keep an eye on any depletions. Dr. Whiteman said that mito patients need to be at the high end of any range since they can deplete quickly.

Hope this might help. We go back to the Mayo Clinic in Minnesota to see Dr. Whiteman 11/30/2004.

Wishing you the best,

Darlene