Heavy Metal, Failure to Thrive, Update, Long..

January 13, 2008

Hi -

I posted a while back about out 7y daughter not improving, and out

decision to homeschool (going great byt the way, not so easy for us,

but worth it in the long run). I wanted to update/get advice on the

health stuff now.

We are seeing a DAN! dr. She has the MTHFR mutation, so we are doing

supps to boost methylation. She was also vitamin A and seleiumn def,

and low in gutathione, but high in homocysteine. We started on 19

supps, including Fish oil and vitamin E. Gluten antibodies were

slightly elevated. We were already dairy free, so we are also now

gluten free. We then did the provoked urine metals test and she was

low in all on pretest, but off the charts high in Cadmium, Aluminum

and Lead. The dr said this is because there are only so may sites to

bind to. he recommended IV caEDTA alternating with rounds of DMSA.

The IV part really scares me. Has anyone else done chelation? I am

on a couple of chelation boards, but it is really a religion there,

and I do not necessarily feel like I am getting the truth. I

understand it is not medically proven, and have been to QuackWatch

and the Mayo Clinic sites about it. I understand the political

issues, I just want REAL info, not rhetoric.

Also -

We saw the geneticist for a follow up, and the big concern was that

Aedin had grown 3 inches in 4 months, but

lost a half a pound in the same time frame. She is now 75 pctile in

height, and below the 20th in weight. She was labeled as failure to

thrive for the first time. (a little scary, but I know it just means

not gaining weight). They are concerned that it will begin to effect

her height, then her

other organs. She was sick the 4 days before the visit, and had not

eaten much, so I am sure that is part of it, but she still should

have gained something in the lst 4 months. They want her on

basically a ketogenic diet, because they think she has issue

metabolizng carbs, because her pyruvates are usually high and very

high when she was sick. They are sending us a powder to add to food

to add calories without adding substance, too. She eats a TON, and

we are GFCF as well. I hope it is the right diet for her. We started

adding back cheese with enzymes, so she can get the fat content.

They are fine with the gluten free, since they would prefer no

carbs at all. We are also going to see an endocrinologist, because

her skin is EXTREMELY dry, and noting helps it.

On the plus side, she is making progress in articulation, and is

getting easier to understand, to us any way. Her body awareness and

coordination is also improving, but not really her strength.

Anyone else with issues gaining weight? Anyone with some REAL info

on chelation?

January 13, 2008

Hi :

Have you done the stool ananlysis has posted a while back to

check for malabsorption? Here are two archived messages from :

/message/59213

/message/59943

And here are two links I found that might also have some good info

for you.

http://www.emedicine.com/ped/topic1356.htm

http://www.emedicine.com/med/topic1384.htm

Hope this is helpful-

Tina

>

> Hi -

> I posted a while back about out 7y daughter not improving, and out

> decision to homeschool (going great byt the way, not so easy for

us,

> but worth it in the long run). I wanted to update/get advice on the

> health stuff now.

>

> We are seeing a DAN! dr. She has the MTHFR mutation, so we are

doing

> supps to boost methylation. She was also vitamin A and seleiumn

def,

> and low in gutathione, but high in homocysteine. We started on 19

> supps, including Fish oil and vitamin E. Gluten antibodies were

> slightly elevated. We were already dairy free, so we are also now

> gluten free. We then did the provoked urine metals test and she was

> low in all on pretest, but off the charts high in Cadmium, Aluminum

> and Lead. The dr said this is because there are only so may sites

to

> bind to. he recommended IV caEDTA alternating with rounds of DMSA.

> The IV part really scares me. Has anyone else done chelation? I am

> on a couple of chelation boards, but it is really a religion there,

> and I do not necessarily feel like I am getting the truth. I

> understand it is not medically proven, and have been to QuackWatch

> and the Mayo Clinic sites about it. I understand the political

> issues, I just want REAL info, not rhetoric.

>

> Also -

> We saw the geneticist for a follow up, and the big concern was that

> Aedin had grown 3 inches in 4 months, but

> lost a half a pound in the same time frame. She is now 75 pctile in

> height, and below the 20th in weight. She was labeled as failure to

> thrive for the first time. (a little scary, but I know it just means

> not gaining weight). They are concerned that it will begin to

effect

> her height, then her

> other organs. She was sick the 4 days before the visit, and had not

> eaten much, so I am sure that is part of it, but she still should

> have gained something in the lst 4 months. They want her on

> basically a ketogenic diet, because they think she has issue

> metabolizng carbs, because her pyruvates are usually high and very

> high when she was sick. They are sending us a powder to add to food

> to add calories without adding substance, too. She eats a TON, and

> we are GFCF as well. I hope it is the right diet for her. We

started

> adding back cheese with enzymes, so she can get the fat content.

> They are fine with the gluten free, since they would prefer no

> carbs at all. We are also going to see an endocrinologist, because

> her skin is EXTREMELY dry, and noting helps it.

>

> On the plus side, she is making progress in articulation, and is

> getting easier to understand, to us any way. Her body awareness and

> coordination is also improving, but not really her strength.

>

> Anyone else with issues gaining weight? Anyone with some REAL info

> on chelation?

>

January 13, 2008

I don't think our kids are processing carbs or fats correctly.... hence Mark's

high blood sugar reading after a 12 hour fast.... not diabetic but definately

high. That indicates that something is going wrong....

If I look at the causes of diabetes, other then genetics, I am stricken by two

of the listed causes listed by the Diabetes association and I must say.....

hmmmmm, gee, where have I read these before! www.autism.com!!

Auto-immune response Is this beginning in Mark? maybe

Enviornmental damage? definately an issue for him!

So, are our kids just getting sicker and sicker over time?

[sPAM][ ] Heavy Metal, Failure to Thrive, Update,

Long..