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Re: Digest Number 1688

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  • 8 months later...

Hi Listmates,

Help please! We are having a baaaaaaddddd reaction to DMSA with our 8

year-old son Noah. We are working with Dr. Karztinel and haven't yet

recieved final labs about what may be going on but I need some reassurance

and help from you guys here in the meantime. Andy, I hope you see this.

After 6 rounds of chelation, Noah became a more obsessive compulsive -

repeating gowls, coughs, sneezes ect,. Then within 7 days, the behavior

exploded. He began to repeat sounds, movements and even the dog. It was soon

so out of control he could not concentrate. Now we can't even take him out in

public- we are tempted to remove him from school -its too disruptive. Now he

is having uncontrollable body movements that sometimes look like seizures. He

can't control making sounds as well. This behavior didn't exist a few weeks

ago! Dr. K. let us put him back on Sporonox and stop the chelation.. We used

Sporonox pre-chelation to kill yeast but he suspects its has returned. So far

ten days of Sporonox has rusulted in nothing! He is still the same -if not

worse.

We are so frightened and demoralized. I hope we didn't cause a behavior

that won't go away. He is not taking any other meds.This is a child with very

toxic lead levels in his body with intense pica. Chelation seemed the only

way to go.

Can anyone speak to seeing this explosion of obsessive-compulsive

behaviors? Are we seeing something some of you have seen? Did it go away?

This reaction is too intense for us. It's hard to have the stomach for this.

Please respond.

Ana Wells

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Ana,

What dosing level and freqency is your son on with the DMSA??

Celia.

Re: [ ] Digest Number 1688

> Hi Listmates,

> Help please! We are having a baaaaaaddddd reaction to DMSA with our 8

> year-old son Noah. We are working with Dr. Karztinel and haven't yet

> recieved final labs about what may be going on but I need some reassurance

> and help from you guys here in the meantime. Andy, I hope you see this.

> After 6 rounds of chelation, Noah became a more obsessive compulsive -

> repeating gowls, coughs, sneezes ect,. Then within 7 days, the behavior

> exploded. He began to repeat sounds, movements and even the dog. It was

soon

> so out of control he could not concentrate. Now we can't even take him out

in

> public- we are tempted to remove him from school -its too disruptive. Now

he

> is having uncontrollable body movements that sometimes look like seizures.

He

> can't control making sounds as well. This behavior didn't exist a few

weeks

> ago! Dr. K. let us put him back on Sporonox and stop the chelation.. We

used

> Sporonox pre-chelation to kill yeast but he suspects its has returned. So

far

> ten days of Sporonox has rusulted in nothing! He is still the same -if

not

> worse.

> We are so frightened and demoralized. I hope we didn't cause a behavior

> that won't go away. He is not taking any other meds.This is a child with

very

> toxic lead levels in his body with intense pica. Chelation seemed the only

> way to go.

> Can anyone speak to seeing this explosion of obsessive-compulsive

> behaviors? Are we seeing something some of you have seen? Did it go away?

> This reaction is too intense for us. It's hard to have the stomach for

this.

> Please respond.

> Ana Wells

>

> =======================================================

>

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Our son gets very loud and vocal when the yeast is up as well as OCD and

increased stimming. When his lab tests didn't show yeast (candida)

showing up, he barely stimmed at all. I think there is a connection.

r

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  • 1 year later...

Dale,

Thanks for your helpful response. What is Sub-Q? I've read about IVIG but

not Sub-Q. I think that the doctor I'm seeing is quite competent. He's

head of pediatric immunology for two major hospitals and has quite an

impressive resume. Maybe he'll know. This doctor does mostly clinical

research. but hopefully he'll be patient enough to get to know his patient.

Thanks for your suggestion on getting my son involved. He's not

very communicative, so at least this gives him a few days to think of any

questions he may have.

Gratefully,

Ann, mother of (14) primary immune deficiency, (10) with

gastroparesis, Christy (16)

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  • 1 month later...
Guest guest

I found some yesterday at Whole Foods.

Re: Digest Number 1688

if you want to get ph paper, email me and i will give you a phone number

where you can order the paper from

emily

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  • 1 year later...
Guest guest

In a message dated 4/16/2004 8:13:37 AM Eastern Standard Time,

writes:

How do you DETOX the LIVER ???

Coffee enemas, Liver flushes, supplements of daily Liver support formulas.

Barb

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  • 9 months later...

Jackie, Good luck on your reimplantation!

Dora, I received the books yesterday and have already finished the first and

started on the second. They're WONDERFUL! Thank you so much for writing

them. =)

Returning to work after CI surgery...I started teaching 2 weeks after my CI

surgery and worked all through my recovery and activation period. I was

more tired the first few weeks after activation from working harder to make

sense of sound and also just from hearing so much more than I had in years.

I think that working while I was adjusting to the activation helped me to

make sense of the sounds more quickly, though. Of course, I had some

wonderful paras who really helped to make things easier for me by making

sure they had my attention before they tried to talk to me. They laughed

because I couldn't stand the sound of the TV and was always telling them it

was too loud. I still do that 3 years later, and drive my family crazy

turning the TV volume down to where they can hardly hear it. I tell them to

read the captions! =)

Beth

Now the Lord is that Spirit; and where the Spirit of the Lord is, there is

Liberty.

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  • 2 weeks later...

In a message dated 1/30/05 3:27:56 A.M. Central Standard Time, Autism and Aspergers Treatment writes:

That's exactly right. She needs task oriented work, not people orientedwork.

Maralee

This could be exactly what is in the future for my as well. He is definitely a "sit in his room and work on figuring his math out and working on things" at night kid. He is not oriented to people. He is in chess club and has that on Tuesday every week after school, which was tonight as well.

Ok today my son , age almost 16, who is taking required Driver's Ed class, told me that in Driver's Ed this is what he did:

hit a car, hit a cat, was speeding in parking lot, almost hit a tree....

but the good news is,,,,

He was only driving the simulators...

Thank God for those simulators!!!! ... hehehee. I think he thought it was kinda funny.

Anyway, hey ... I hated those simulators too in high school and did not do well on those either as cars dart out in front etc... He said this voice keeps telling you to put the brakes on, and turn a turn signal on etc etc...... hehehe glad we do not have those little voices in our real cars like that.... well we kinda do.... has become one in my car at times hehehe./

Then he brings home a book on the Vietnam War and a story about it. This brought memories to me as when I was a small child, I collected photos of the Vietnam war and put photos of the small children of the Vietnamese that were in the newspaper, all over my wall in my bedroom. Additionally, a guy who was about 4 -5 years older than me , sat in back of me in high school business class. I remember it well. He was in trouble and went to war in the Vietnamese war. He then came back, having not finished high school and a judge for some reason, because of his past situation, let him take classes in my high school with the rest of us and finish. Pretty funny to tell people I sat next to a Vietnam Vet in high school.

in IL

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