400 mg DMSA for 40 lb child-challenge

July 12, 2003

We had been seeing Dr. Amy Holmes until she stopped practicing. We

were fortunate enough to have been transfered to her partner,Dr.

Cave. We have trusted both of them completely before, but

Dr. Cave's latest treatment prescription is making us worried.

Dr. Cave wants us to do a single dose challenge of DMSA at 400 mg

for our son (who is roughly 40 lbs) and do a 10 hour urine

collection after this dose. I was so surprised that I asked her if

this was correct given that we had gone through a couple cycles of

DMSA (with the normal 4 days on/3 off schedule but our dosage never

exceeded 150 mg/8 hours). She said that none of her patients have

ever had problems with the 400 mg level and that the dosage of DMSA

we used before was too low to indicate anything (we were under Dr.

Holmes then).

Given all of the things I am reading about the questionable benefits

of a high-dose DMSA challenge, we are torn over what to do. (And

equally torn over questioning a doctor we want so desperately to

fully trust - it took us a LONG time to find someone who seemed to

really know what they were doing)

My DH and I discussed maybe giving him 200 mg, waiting 30 min to

give another 100 mg, and give the final 100 mg after an hour to

minimize any adverse reactions to such a high dosage.

What should we do? And if we decline the challenge, then what do we

tell Dr. Cave?

Robin

July 12, 2003

> We had been seeing Dr. Amy Holmes until she stopped practicing. We

> were fortunate enough to have been transfered to her partner,Dr.

> Cave. We have trusted both of them completely before, but

> Dr. Cave's latest treatment prescription is making us worried.

>

> Dr. Cave wants us to do a single dose challenge of DMSA at 400 mg

> for our son (who is roughly 40 lbs) and do a 10 hour urine

> collection after this dose. I was so surprised that I asked her if

> this was correct given that we had gone through a couple cycles of

> DMSA (with the normal 4 days on/3 off schedule but our dosage never

> exceeded 150 mg/8 hours). She said that none of her patients have

> ever had problems with the 400 mg level and that the dosage of DMSA

> we used before was too low to indicate anything (we were under Dr.

> Holmes then).

Her patients don't tell her when they have trouble with this, or when

they chelate on a 4 hour protocol because she has at least said she

will discharge people who use the 4 hour rather than 8 hour protocol

and parents believe her so they tell white lies in order to not be

abandoned as patients when their child needs continuing care.

Due to this unfortunate communication issue she may not be aware of

what her patients really experience or do.

>

> Given all of the things I am reading about the questionable benefits

> of a high-dose DMSA challenge, we are torn over what to do. (And

> equally torn over questioning a doctor we want so desperately to

> fully trust - it took us a LONG time to find someone who seemed to

> really know what they were doing)

Questioning is not a sign of distrust. It is a sign that you trust

her enough to put all your cards on the table. Just be sensitive to

the atmospherics and make sure that is what she wants.

>

> My DH and I discussed maybe giving him 200 mg, waiting 30 min to

> give another 100 mg, and give the final 100 mg after an hour to

> minimize any adverse reactions to such a high dosage.

>

> What should we do? And if we decline the challenge, then what do we

> tell Dr. Cave?

You have a lot of choices. Some are things like telling her the

truth, and some involve telling white lies. Physicians are often not

adequately sensitive to the power they wield and can inadvertently

abuse by causing people to believe in whatever manner that they might

withhold permission slips for necessary medications and tests if the

patient doesn't do something arbitary the doctor wants. The ethical

guidelines in medicine are that the patient has the absolute

unquestioned right to refuse any treatment if they are competent (not

insane or incoherent) and you are the patient's representative in

exercising this right for your child. However, many physicians are

not completely comfortable with this and may either twist your arm,

give you grief or refuse further service.

I think the more important question than a single challenge test is

when you are going to try 4 hour rather than 8 hour chelation and find

out if your kid is like most other kids in that they benefit much more

from that with far fewer problems. Another thing you can try and then

decide whether to tell her or not.

One way to do the challenge test that would be somewhat less horrific

(and would put more mercury in the urine sample) would be to give 100

mg DMSA at hours -1, 2, 5 and 8 of the 10 hour

July 13, 2003

Hi,

About 2 years ago we did a couple of challenge tests and WOW!! (This is

before we knew about Andy or mercury--we were fighting Lead.) The DMSA we gave

our daughter made her just unmanageable! She was so out of control that I just

couldn't do the tests or the chelation any more. The tests were BAD but there

was an end to them. The chelation was terrible. I was following the protocol

of high dosage DMSA every 8 hours that my doctor told me to do for chelation

and that was really bad. After two of those I thought it was better to find

another way.

Just out of self-preservation as a parent, if nothing else, you should really

reconsider the high doses of DMSA. The child suffers too!

Since we started the RIGHT Protocol thanks to ANDY, my daughter has had few

problems with chelation. I do not do challenge tests because I can see when

she is showing progress. We are on Round 21 now. I just can't see putting a

child through testing if it has very marginal value. So what if you see lots of

stuff coming out? In my opinion, it is more important to note behavioral

changes and health improvements.

Good luck,

in Salt Lake City

July 15, 2003

My son, who is around 43 lbs., did the same test a couple of weeks ago. He

took 500 mg, followed by a 10-hour urine collection. I didn't notice any

adverse reactions. Why would it be unsafe to give a single large dose?

S.

In a message dated 7/13/03 3:04:51 AM Eastern Daylight Time, "

Robin " <dr_lebon@...> writes: