glycoproteins experience/LONG

[Guest guest]

I just want to share my recent experience with glycoproteins

for Leanna. Recently, it was brought up and I mentioned Leanna had been on them

(ambrotose, gummies, glycentials, PLUS and ambrotose AO). She has been on them

for about one and a half months. I finally gave up on them yesterday, and am

shipping all that I have left back. I had paid $369 for a package . I had

committed for 4 months at first. I was told that it takes at least that long to

know if they are really helping. I also recall that Grace (If I am not

wrong) will be trying them also. Leanna was having lots of Gas, increased

stools a day, softer stools and some upset stomach. I was told to hang in there

and her body will adjust. She had problems on and off and I hung in there.I

tried adjusting her dose of the ambrotose as to find a happy medium. I had

stopped the ambrotose on the weekend because I did not want to deal with it (

pain to give the powder) on our trip to Las Vegas. She was having normal stools. When

we came back, I started her on it again. The gas started again, and the soft

stools. Yesterday, I had to go pick her up for the second time in school for

losing control of her bowels. Poor baby was crying her eyes out from

embarrassment . She is in kindergarten and has never ever had an accident since

she was 3 years old. She is now 7. When I went to get her, she was shaking from

anger, embarrassment and it took me a long time to assure her it was not her

fault. I was so angry I said “No more ambrotose, leanna’. She was

so relieved that she did not have to take it. I was also told to take her off

milk products. She has not had milk, ice cream, etc for a month and a half.She

asked me if she could have milk tomorrow morning, and when I said” why

not”, her reply was “ That is a dream come true”. When she

said that , it broke my heart. My husband and I discussed the situation and

decided it was not worth it. We had not seen any improvements thus far. Maybe

if we had, we would have continued. We also decided the stress the side effect

cause are not worth it for mito.

Her face was pale from anxiety that day. I said no more. I give up. In my

heart, I did not think they would “save her life” as the company

keeps promising. I did not want to leave any stones unturned and want no

regrets. I feel zI gave it my best shot. Bottom line is if God wants to cure

Leanna, he does not need my help. Leanna breathes on her own and eats and

enjoys food today. I know tomorrow she may be g-tubed and trached. I do not

want to deprive her of the pleasure of food today. Of course, as parents we

need to feed our children healthy, well balanced meals, and I do. Will

saying no to an ice cream cone once in a while save her life? I think not. I

watched Samya die very quickly and mito

is vicious and nasty and robs our babies of their life soooo quickly. The

reality of what will very likely happen to Leanna makes me want to give her a

quality life, and not worry so much about quantity. Of course, all of this

reasoning is to convince myself I did the right thing. Of course, the company

keeps telling me they can save her life, but HOG WASH. I have lived it once

already.

I just want to share my experience

with everyone. Maybe glycoproteins will help and maybe they are worth a try.

That is a decision that is individual. I just want you all to know what it did

to leanna.

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@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

[Guest guest]

Suhad...

I totally understand the decision you made and just wanted to say so. There came a point for us with that nothing was working and we just decided he could do what made him happiest and that in the grand scheme of life the other things just didn't matter any more. I don't regret that decision at all! Even the week he died, he would get up and kick the soccer ball and then lay back down...he used his energy in the way that blessed him most and I am happy about that! I just wanted to say I hear ya and hang in there!

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comwww.LifeofLoveProject.org