Re: Darlene G.

[Guest guest]

It was nice hearing from you again. Sorry we are going to miss each

other at Mayo as I noticed you were returning there at the end of the month.

I hope JD is doing well lately. Great to hear he is now 17!

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: characteristics of complex 1 defiency/Ange

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