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Re:Kim N.

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I went on a diet similar to that about 12 years ago and lost tons of

weight and ate wonderfully. It wasn't too hard to stick to as you are able

to eat plenty of the healthy stuff so you won't feel the hunger, except for

the first few days when your body discovers there isn't that presence of the

sugars. Hope it works to help the girls.

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: seizures help/ Dawn & kim

> >

> >

> > Dawn, Chelsea has been on Keppra for 2+ yrs as well. It has been a good

> > drug for her with little side effects. She is on the highest dose for

> > her

> > weight, and had to recently start Lamictal as well, but her seizures are

> > under good control.

> > I wasn't aware that any particular seizure type is associated with

> > mito,

> > I assumed any kind of seizures could happen. Since Chelsea has Rett's,

> > this is probably moot, but she has had all kinds of seizures, including

> > absence. She has a strong tendency toward convulsive seizures, but

> > progressed to that point.

> > I hope Keppra works for Molly. What do her seizures look like?

> >

> >

> >

> > In a message dated 12/21/2004 7:48:20 P.M. Eastern Standard Time,

> > knovy4@... writes:

> > They are on a total of 1500mg per day. (They weigh 30 pounds.)

> > Kim, this is the dose Chelsea is on, she weighs 60lbs, so 2wice as much

> > as your kiddos. I was told this was the max dose for her weight and

> > going

> > higher was probably not going to do any better, so she was put on

> > Lamictal. What have you been told is the max dose!

> > Thanks!

> >

> > Sorry for such a late response, got behind on my mail, Like I do every

> > Christmas!

> >

> > e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

> >

> >

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