Re: glyconutrients--SUHAD

[Guest guest]

We too are going to try them on my daughter, Grace, who like

your daughter, has been dx with leighs.

We have not purchased anything yet.....our pediatrician is looking

into it for us, so I too, will keep you posted.

my daughter did not show any reponse from the vit. cocktail, so we

are not expecting anything from this............but it is worth a

try!

thanks for your info.

bethany

> Dear Bethany,

>

> Funny you should ask. We have been going back and forth on this

for 3

> months. Finally, we started Leanna on them about 2 weeks ago. I

heard about

> them from a Christian friend that kept bugging me. I am real

skeptical about

> them. I am in contact with a nurse practitioner that is guiding me

through

> and we decided to try them. Dr. Boles told me that he did not

think they

> would make a difference, but would not hurt. We are desperate and

decided to

> try them. Expensive they are!! That turned me off because I was

afraid it

> might be a marketing scheme to rip off desperate parents. We

figured if it

> does not work, we only lost money and effort on Leanna's part in

taking

> them. I added them to her mito cocktail, poor baby like she needs

more crap

> to swallow. I have been waiting to see if they make a difference

and hoping

> to share some good news with all of you. I was told that you have

to be on

> them at least 4 months to see any diference so we committed to

that. If they

> do nothing, at least we tried. I did not like in the beginning

that the

> company rep came off very strong. They seem to think they can cure

> everything and are Too positive about them. In the beginning I

was so mad

> and yet broke down and put down the money. I was wondering myself

why I had

> not heard any mention from the mito group. Supposedly, they tell

me there is

> a little girl with mito that had miracles happen to her from the

> glycoproteins. When I read the story, I thought, " if this is

true, and this

> mom knows what we go through, why doesn't she inform all of us, " I

asked the

> rep that I deal with to get a hold of her. I want to talk to her.

So far, I

> have not been given the contact. If I had what happened to her

happen to me

> , I would be shouting it everywhere and to all mito parents. I

also do not

> like that they have sooo many products and want you on all of

them. Leanna

> is on ambrotose, glyucentials, gummies, plus ambrotose AO and now

the rep

> want s to add more. No more no way. How much can my 7 year old's

body take?

> Leanna takes stuff all day long. I will try to keep you all posted

on it

> from my experience. Leanna was on it for about 2 -3 weeks and then

got a

> stomach flu last week with diarreah. She was IV'd at the ER for

one day and

> better now. I stopped all of the stuff for 5 days and now today am

> restarting. I am skeptical, and yet desperate. The doctors have

given us

> no better alternatives.

>

>

>

>

>

>

>

> Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna

> with same disease.

>

> Samya's Memorial Site: www.Samya.org

>

> Email: Suhad1970@s...

>

> Alt Email: Suhad@S...

>

> AiM Chat: Suhad1970

>

>

>

> _____

>

> From: bethanycarol [mailto:bethmcmullen@c...]

> Sent: Tuesday, May 11, 2004 10:44 AM

> To: Mito

> Subject: glyconutrients

>

>

>

> has anyone tried glyconutrients?

> just received some info in the mail, and wanted to see if anyone

has

> first hand experience?

>

> thanks,

> bethany

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

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>

>

>

>

>