Re: new here.....partial complex I

[Guest guest]

hi and welcome.

my daughter, anna grace, has been dx with leighs. She is 4 and is

nonambulatory and nonverbal. However, she knows exactly what is

going on and communicates through facial expressions and verbal

sounds.

she was on a vit. cocktail and we saw no benefits, therefore she was

taken off. But, lots here have seen great improvements.

also, she is gtube fed, and we give her peptamen, jr. she was

switched from pediasure to the peptamen, once she was dx. the

peptamen jr. has mct oil. the pepatmen jr. is very expensive, but

we got our insurance to pay for it, since it is anna graces main

form of nutrition. (she takes approx. 4 cans a day)

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hello

> I am new here and I want to see if their are any children like my

> son. He was diagnosed with a partial complex I mitochondrial

Defic.

> He has low muscle tone and low energy, loose joints, pectus

> excavatum. He is 4 and he walks with a walker. He can crawl and

walk

> along furniture really well. He can take 2-4 steps then he falls.

He

> has a speech disorder called apraxia. He understands everything

you

> say to him and can answer your questions. He is learning but

behind.

> He has low carnitine levels but he is on Carnitor and his levels

have

> normalized. His coenzyme Q 10 also was low and he is on

supplements.

> We started his coenzyme and carnitor at different times and I did

not

> see any difference with the Carnitor however with the Coenzyme is

> another story I saw a lot of energy and he ate like a trooper. But

> after a week it seems to go away.(we doubled the amount already)

Like

> his body gets used to the amount. I have not talked to his Dr. yet

we

> have an appt in a month. Does anyone else notice it? I also have a

> question about feeding. I am currently giving him 1 to 1 1/2 cans

of

> pediasure is there another formula (shake ) that is better for

mito

> disease? I heard of Peptamen Jr. but I have no clue what would be

> good for him. Any info would be greatly appreciated

>

> Angel mom to a beautiful boy 4 partial complex I mito

[Guest guest]

He has low carnitine levels but he is on Carnitor and his levels have normalized. His coenzyme Q 10 also was low and he is on supplements. We started his coenzyme and carnitor at different times and I did not see any difference with the Carnitor however with the Coenzyme is another story I saw a lot of energy and he ate like a trooper

Angel, FYI. . . carnitine and CoQ10 work synergistically (together) in the body. That is why you probably saw a more dramamtic response after adding the CoQ10. I am not sure why the effect seems to be wearing off, something to discuss with his drs.

Welcome to the list! you will find a lot of wonderful support here. I have a daughter who is almost 7, and is severely neurologically affected by an unknown mito disease. How was your son diagnosed?

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Hey guys!

Sorry to but in here but just wanted to let you know that our jenny was also on carnitor and Co Q-10. She was on the Q-10 with alot of added energy but it seemed to not be working at all for her in a little over a year. It was like her body got used to it like with some antibiotics. Just thought I would share.

Have a great weekend all!

Horsley

Re: new here.....partial complex I

He has low carnitine levels but he is on Carnitor and his levels have normalized. His coenzyme Q 10 also was low and he is on supplements. We started his coenzyme and carnitor at different times and I did not see any difference with the Carnitor however with the Coenzyme is another story I saw a lot of energy and he ate like a trooper

Angel, FYI. . . carnitine and CoQ10 work synergistically (together) in the body. That is why you probably saw a more dramamtic response after adding the CoQ10. I am not sure why the effect seems to be wearing off, something to discuss with his drs.

Welcome to the list! you will find a lot of wonderful support here. I have a daughter who is almost 7, and is severely neurologically affected by an unknown mito disease. How was your son diagnosed?

e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

My son is 4 years old and he was diagnosed thru a skin biopsy. He doesn't have the full complex I only a partial defect but it is enough to have symptoms. We actually started the coenzyme and riboflavin first. He had a lot of energy and I was on cloud 9. Then after a month his energy was the same and we added carnitor and I saw no added energy. Then the Dr. doubled his amount (coenzyme Q10) and again he had energy but in a week it went down again. I am so frusterated I want to help him so badly, I want him to walk. It seems like he will never get there. My husband has been gone to 10 months (deployed army ) and it is so hard to be by myself and tell him updates on his son. When he left my son could not walk with a walker now he is walking with a walker but not by himself. The "glue" isn't all there yet. He can walk great with his walker he runs in it. But he just has low tone to hold himself up without holding on.

Does anyone get their vitamin supplements covered thru insurance? If so how do you get it covered I am trying right now to get his coenzyme Q10 and riboflavin covered but am I wasting my time? They are actually low in his blood.

What kind of companies sell coenzyme (liquid) and riboflavin at a reasonable cost? Right now I go thru T.J. and they aren't too bad I buy 12 bottles at a time and I get it half off. But I am trying to get it covered thru insurance and let the pharmacies order it.

Thank you

Angel

Re: new here.....partial complex I

He has low carnitine levels but he is on Carnitor and his levels have normalized. His coenzyme Q 10 also was low and he is on supplements. We started his coenzyme and carnitor at different times and I did not see any difference with the Carnitor however with the Coenzyme is another story I saw a lot of energy and he ate like a trooper

Angel, FYI. . . carnitine and CoQ10 work synergistically (together) in the body. That is why you probably saw a more dramamtic response after adding the CoQ10. I am not sure why the effect seems to be wearing off, something to discuss with his drs.

Welcome to the list! you will find a lot of wonderful support here. I have a daughter who is almost 7, and is severely neurologically affected by an unknown mito disease. How was your son diagnosed?

e, Chelsea's mom(nonspecific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

Angel,

There is a pharmacy in Bethesda, MD that has a compound pharmacy and

also sells there own brand of vitamins. We've been using them from

the beginning. They will try to bill insurance for you as well. It's

called the Apothecary and the # is (301)501-1112. They ship around the

world. Maybe they can help you out.

[Guest guest]

Angel,

There is a pharmacy in Bethesda, MD that has a compound pharmacy and

also sells there own brand of vitamins. We've been using them from

the beginning. They will try to bill insurance for you as well. It's

called the Apothecary and the # is (301)501-1112. They ship around the

world. Maybe they can help you out.

[Guest guest]

Angel,

There is a pharmacy in Bethesda, MD that has a compound pharmacy and

also sells there own brand of vitamins. We've been using them from

the beginning. They will try to bill insurance for you as well. It's

called the Apothecary and the # is (301)501-1112. They ship around the

world. Maybe they can help you out.