?? regarding and DS

[Guest guest]

I am

tossing this out there to see if any of you have some insight or ideas to

help with some of ’s issues. This is just the tip of the

iceberg, BTW. I feel like the Specific Carb Diet has given us a

wonderful foundation and since I can’t get her off the

Prilosec, I think this will have to be her diet to diffuse the effects of the

prilosec. Right now she is like a bucket with a hole in it. Well, even with out

the prilosec, the DS is a metabolic bucket with a hole in it too!!! But I feel

like we could start to fine tune and tweak some other issues now. I

am sorry if this is not very organized. She is very complicated and everything

seems to blur into something else, which is part of the problem; fix one thing

and cause a

problem somewhere else.

’s

medical issues-

Down

Syndrome- messes up the SAM cycle which results in folate and B-12 problems. Can

have way too much of these floating around, but yet not enough available to the

cells to complete the SAM cycle. This

causes the MCV ( mean corpuscle volume-size of the cells) to be high because the cells aren’t taken out of circulation as they are supposed to

be. Of course cells with unchecked or uncontrolled growth is

cancer, and people with DS are more susceptible to leukemia. One way to test how this methylation

cycle is working is by checking homocystiene and the MCV. Her

homocystene is smack in the middle of normal- Ds typically falls LOW as things

try to keep up with triplicated genes causing the mess up in the SAM cycle, and

her MCV last

time was just a tiny bit out the high normal range. It had gone down since we

had checked it before her heart

repair and the switch from Zantac

to Prilosec. Since Prilosec messes

up B-12 and the SAM cycle is affected by B-12 was wondering if the Prilosec had

some kind of good effect on that? BTW- ALL of these tests are analyzed by

ME, my ped is nice enough to order them for me, but she doesn’t think

much of them.

Can’t

seem to find a Dr that

is interested in the metabolibic issues of DS even though they

are WELL documented in the medical literature.

I am taking her all the medscape

articles on prilosec’s affect on B-12 and gut bugs as I want her to check

’s B-12 levels, homocysteine and MCV again.

This mess up in the SAM cycle also results in reduced glutathione. You can

get a script for a transdermal patch, if you can find a Dr to give you one ;-) But

was wondering if any of you had ways to boost it naturally!?I know asparagus is

supposed to help boost it, but not sure how? Need to know how in order to guess if it

will work for her. Going to see if I can get the ped to check

that level as well. Tylenol depletes glutathione btw. So giving a child Tylenol

esp after some

biological trauma

such as a vaccination is exactly the WRONG thing to do!! The goes double and in

’s case, triple! if you have ASD or DS.

GERD- This

has been a real tough one for us. It was so bad it eroded her airway and caused

a life threatening narrowing of it. was totally breast fed for her

first year and kept off of sugar and wheat for most of her second year. Problems

really compounded after her major heart repair . I

think the massive amounts of antibiotics and steroids used to get her through

it, not to mention 6 hours on by-pass and the mess that causes, made her gut

issues explode. I was using pro-biotics faithfully on her all along, both kirkmans Gold and

Yo-Baby yogurt, but none of them had enough live cultures to keep up with the

onslaught. She has been on the Specific Carb Diet for a solid year with incredible

results on her entire body!! It has not allowed us to cut back on the GERD meds

though. L I keep trying…. I don’t see how her body is going to

break free of them since she has been on them since BIRTH!! Anyone have some

good ideas as to how I could wean her off? Things are complicated here by her

low muscle tone. Low tone is a neurological condition and even though it is

affected by muscle strength, that is not enough to completely override it. It’s

an issue of nerve impulses not firing rapidly enough or going down the wrong

paths. Course many things affect nerve function. Acetylcholine is one and it

seems that it’s needed to keep the LES ( muscle

at the top of the stomach ) closed. Course it so happens that kids with DS are

also low on acetylcholine! Bacopa

is supposed to help boost that, so am hoping that it might help

keep her LES closed. I can’t get her up to a full dose

though as Bacopa is a diuretic and every time I get her to the full dose, she

starts to get blue around her eyes. She does not have a pulmonary valve at the

moment, but instead has a gortex flap which we know has failed and her right ventricle has

started to enlarge. Surgery is imminent, and they are just waiting til the RV reaches it’s

max allowable size. I am beginning to see poor circulation issues again so I

know things have

gotten worse. We go see the Card soon to take a look at how things are

doing.

Thank you

for reading this far!!!! Would love

to hear any comments or observations you might have regarding any of these

things.

Carol in IL

Mom to seven kids, twin grandson's and , 4 DS

" Unless the Lord builds the house, they labor in vain. " Psalm

127

My problem is not how I look, it's how you see me