Re: Introduction - Ann Marie

March 18, 2005

Hi Ann Marie,

It was great to read about your son. It gives me hope since his

story is very similar to my son's story (premature, CP, etc.). If

it is not an intrussion I would like to ask you how you find out that

you too have mito disease and if you ever showed any symptoms. Does

any one of your other kids have it also? I have wondered if I might

have it too and if a future child would have it too ( I only have

one son and have been thinking about another one).

Is your son in any treatment and what it is about (supplements, diet,

etc.). I have a concern with starting my son on a diet since he is a

very picky eater. He does not eat many things and even those things

he likes he won't eat at times. If your son is on treatment, have

you seen an improvement on his motor performance and how long it took

to see improvements? My son walks with the assistance of a medical

walker and his PT says he will walk indepently eventually but

still needs to improve his balance.

Thanks for sharing your story with me. It is really appreciated.

Marie

March 28, 2005

Hi Marie,

"how you find out that you too have mito disease and if you ever

showed any symptoms"

I have had minor clues my whole life about the mito, but once Joe

was diagnosed and I was researching everything... It all made more

sense. The early symptoms that I can recall or found in my medical

records - one seizure like episode when aprox. 9 months old (none

since), slept all the time (fatigue), couldn't get well fast(very slow

healing), depression like symptoms in teens.

In adult years, i had 4 high risk pregnancies (for 4 unrelated and not

predictable issues)... 2 premature births... I kept telling the docs

that my body didn't do pregnancy and birth well... 3 c-sections with

long recovery times. I am very medication sensitive...birth control

pills, anti depressants, antihistamines, anesthesia.. the list goes

on. In the past few years though, my thyroid has quit functioning, I

have become pre-diabetic, my adrenal glands are not working well and my

progesterone levels are off. I have over the years had increasing

fatigue issues, more problems with immune system, muscle aches and

pains. That is the basics of what lead me to the docs who believe

(even after a botched frozen muscle biopsy) that I do suffer from the

mito.

"Does any one of your other kids have it also? "

At this point we don't know if any of our other kids have mito.

There will be a biochip in the (hopefully) near future that will be

able to diagnose a more diverse range of mito disorders with only a

blood test, so my hubby and I decided to wait unless they showed

symptoms.

"Is your son in any treatment and what it is about"

Yes, Joe receives PT, OT and had speech for his first year (he was

tongue tied and when they clipped it he was fine). He is very smart

but processes things a little slowly so he will need some help when he

starts school. He gets aquatic therapy and during the summer he gets

horseback riding therapy. He gets diet supplements the mito cocktail

(coq10, carnitor, b vit) he also gets pediasure (2 cans or more/day)

with Duocal added to it, he has been very underweight and is finally

catching up. Joe has a walker (mostly for balance too) and a

wheelchair (which we only use for long distances). Since starting the

mito cocktail, we have seen incredible progress in Joe. He has gained

weight and put on 3 inches in 1 1/2 yrs. His motor skills also

improved and he seems to be a lot healthier, get sick a lot less now.

I am hoping this helps you and your son.

Praying for all of us,

AnnMarie L. - Complex IV (pre-diabetic, hypothyroid, adrenal/endocrine

issues)

Married to my best friend Rick,

Very Busy Mom to (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

gina.m.fernandez@... wrote: