[SPAM] Re: Intro - severe global apraxia/mitochondrial disease

[Guest guest]

The mito cocktail is perscribed for children or adults who have

confirmed or suspected mitochondrial disease (www.umdf.org has alot

of info on mito). Its generally only suggested that it be

perscribed by a doctor as no long term studies have been done on the

doses and suppliments that are used... with mito there are no other

treatments and the disease is progressive and devastating so its

worth it to try a cocktail with no long term studies...

It is usually made up of several vitamins and suppliments, depending

on the child and the specific mito disorder... usually it has

carnitor (perscription med), coenzyme q10, high doses of vitamins C,

E, B1 and B2, occasionally biotin, vitamin K, A, creatine, alpha

lipoic acid, etc.... its very individual based on the patient and

the disease..

Hope this helps explain it a bit!

Keely

www.caringbridge.org/visit/brandonandtyler

> > > Does your son have any issues other than the apraxia?

> >

> > Hi Keely,

> >

> > Sorry it took me so long to respond. Yes, Ethan has sensory

issues

> > too. His apraxia is also global so he is generally

uncoordinated

> but

> > some days are much better than others. He has some minor

> dysmorphic

> > features like a simian crease on both palms, a high arched

palate,

> > slight micronathia and microcephaly. He also has had some

> peripheral

> > neuropathy that we discovered in tactile exercises during OT.

It

> has

> > seemed to have gotten much better on vitamin E though.

> >

> > He has responded in the past to supplementation by surging but

then

> > partially regressing. He often keeps motor gains but always

loses

> > the limited speech sounds. For a couple of weeks he was having

> daily

> > poput words (that were contextually appropriate) but then they

> > disappeared. Since beginning levocarnitine he is surging again

but

> > not having poputs, just many more sounds and speech attempts,

with

> > some success after significant groping.

> >

> > Developmentally he has had some sensory issues from birth but

they

> > have come and gone and changed over time. He was slightly late

with

> > motor milestones.

> >

> > He has always seemed apraxic though. He would lose new sounds

> > whenever he gained new ones even as a baby and we have video

of him

> > at 11 mos. obviously groping. He could not voluntarily stick

out

> his

> > tongue until he was about 20 mos.-old. He still can't move it

> around

> > well. He can't blow or pucker. He couldn't clap until he was

18

> mos-

> > old and there are still some days when it is difficult for him

to

> > point.

> >

> > He also has hypotonia and chronic GI problems. He is a very

> resistent

> > eater and can't chew well. He has never lined things up or

flapped

> > his hands but lately he has been spinning things a lot and his

eyes

> > seem to hurt. (We are taking him to an allergist and an

> > opthamologist.)

> >

> > On the positive side he is extremely affectionate and

generally

> very

> > happy. He doesn't have excessive tantrums because, quite

frankly,

> he

> > communicates well non-verbally and can usually make himself

> > understood. He has some auditory processing issues but his

> receptive

> > language is good.

> >

> > The preliminary metabolic tests look good but we are still

> following

> > up to make sure. There are other metabolic things that would

fall

> > more in the area of endocrinology that we want to exclude. We

don't

> > want to get too invasive though unless we see more red flags.

Our

> > neurologist suggested the possibility of a mild mitochondrial

> > disorder and agreed that trying a mito cocktail might be a

good

> idea.

> >

> > What supplements does your son take? Is he on a restricted

diet?

> > What types of theraputic interventions have helped the most?

> >

> > Thank you again for your input.

> > Nadine

> >

>

>

>

>

>

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