Re: I would like specifics on how Mito Cocktail has helped you or you child!!

[Guest guest]

Tamara,

It was suggested we start the mitococktail awhile back but due to my

son's volume issue(he was already on so many med.'s and would vomit some

out) we decided not to start because there was no gurantee. He continued to

decline healthwise and eventually went into cardiac arrest and stroke.

Since then they put him on the mitococktail, but he was also put on cardiac

med.'s and a change in his formula (he is totally j-tube fed) all at the

same time, so we really don't know what made the difference, but he is the

healthest he has been in six years. I really wish I would have put him on

the cocktail when it was suggested, but hindsite. It may have been the

cocktail, it may have been a change in formula, it may have been he needed

the cardiac med.'s (they kept an eye on his heart but it was always normal)

or it could have been prayers. So who knows? But if i could do it over i

would have started the cocktail when they suggested it. just my experience.

Good luck with whatever you do. Barbara

>

>Reply-To: Mito

>To: Mito

>Subject: I would like specifics on how Mito Cocktail has helped you

>or you child!!

>Date: Sun, 01 Aug 2004 19:36:28 -0000

>

>We would like to hear stories on how the Mito Cocktail has helped you

>or your child. It is very costly, yet we will do anything to slow

>down the process. We want Joey to feel as normal as possible. Any

>help would be GREAT!!!!

>Thank you Tamara

>

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[Guest guest]

Hi Tamara, It is hard to pin down exactly what response Hannah had

to the cocktail because we got her her first pair of glasses at the

same time. She was 3 yrs old. Her eyes were quite farsighted and we

didn't realize that she couldn't see well until her eyes started

crossing. She seemed to become much more active, actually now she

is hyperactive! It has helped with her energy for sure. But one

thing that I am sure happened is that she had her first formed bowel

movement within days of starting the cocktail. Before that she had

always had extremely loose stools. I believe that she is healthier

because of the cocktail. I had her Dr write a letter to her

insurance explaining that the cocktail was the standard procedure for

treatment of Mito and they cover it, even the over the counter stuff.

I don't have it mixed, we give it to her in her food. She has Federal

Blue Cross and also Childrens Special Health Care of Michigan. Blue

cross pays their share and then CSHCS pays the rest. If there is

anyone that is from Michigan that doesn't have CSHCS email me because

it is almost too good to be true.

> We would like to hear stories on how the Mito Cocktail has helped

you

> or your child. It is very costly, yet we will do anything to slow

> down the process. We want Joey to feel as normal as possible. Any

> help would be GREAT!!!!

> Thank you Tamara

[Guest guest]

Tamara- I really don't think the cocktail as helped Wyatt, however I

am not willing to stop using it just in case it is maintaining his

health. We started his cocktail in May '03 and from June '03 to

December '03 he was in the ER once a month for either dehydration

and throwing up for no reason or having uncontrolled seizures. In

January '04 he had a feeding tube put in and that is when we saw an

improvement in his health and overall strength. As I look back on

things I can't believe that I was reluctant to do the feeding tube.

Personally I would do a feeding tube before the cocktail. In our

experience that is what has made the difference. One last thing I

have been told about the cocktail is that the earlier you supposidly

start it the more success you have, i.e. a newborn vs. a 5 year old

who has had symptoms since birth will not have as much success as

the newborn has with it. Good luck with your decision. Your

natural instinct will tell you what to do.

Geri-Anne and Wyatt, Complex I

- In Mito , " fairgrovejoe " wrote:

> We would like to hear stories on how the Mito Cocktail has helped

you

> or your child. It is very costly, yet we will do anything to slow

> down the process. We want Joey to feel as normal as possible.

Any

> help would be GREAT!!!!

> Thank you Tamara