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Lisa,
Is there any reason you took the DMSA out when you started the ALA? I talked extensively with Dr. Jane El-Dahr in Orlando, and what she seemed to be saying is that the two work together in phase II.
We did build up slowly to the 20 mg, per Dr. Amy. Unfortunately in the middle of this we switched to the 4-hour dosing from the 8-hour dosing, but our compounding pharmacy FORGOT! So poor little Kenny got double dosed for two cycles. No telling how long that would have occurred if we hadn't forgotten to give him his dose one night and called home when my watch went off to ask the babysitter to do it. My daughter called me back to verify they had the right prescription because she noticed it said every 8 hours on it, instead of every 4. (Pretty good for an 11 yo to pick up on this, huh?)
As for the speech, yes, as a matter of fact, I am noticing some really good stuff. Instead of "cookie" he is now saying "I want a cookie" or "I want to eat a cookie". Utterances are longer, and articulation is better.
Stimming is still a problem, and I suspect yeast, based on what I am reading on the lists. I need to run another stool test, I think.
On another note, we are finding that giving ibuprofen the day after coming off of a cycle seems to help Kenny.
----- Original Message -----From: lisa edmondSent: Monday, March 26, 2001 10:27 PMSubject: Re: [Autism-Mercury] Re: Status report on KennyHi Cindy,Thanks for responding. I know you're BUSY what with your new school and Kenny and all.Sydney turned 8 the end of December, too. But I've kept her dose low because I'm concerned that she might react horribly. I have her on ALA alone after having done around 5 months of DMSA alone - I just finished the very first round of ALA last weekend (doing it every other weekend) and I kept it at around 5mg. It seemed to cause her allergies to flare up - either that or she came down with a quickie cold. Chelation always seems to bring on congestion of one kind or another. Have you experienced this?Did you build up slowly to the 20mg of ALA? Is Kenny regaining his language again? I believe you'd said he'd lost some of it when you introduced the ALA?Lisa----- Original Message -----From: persistentCSent: Sunday, March 25, 2001 5:59 PMSubject: Re: [Autism-Mercury] Re: Status report on KennyLisa,I think we started out with 10 mg of ALA every 8 hours. Later we switched to the 4-hour protocol, which seemed to be better. Now he is getting 100/20 DMSA/ALA every 4 hours. He weighs about 57 lbs.Since Kenny is older (he'll be 8 in May) we are going with a more aggressive protocol.----- Original Message -----From: lisa edmondSent: Sunday, March 25, 2001 2:21 AMSubject: Re: [Autism-Mercury] Re: Status report on KennyDid you start your sons out with a 25mg dose of ALA? I introduced ALA to my
daughter last weekend and started her on a dose of 5mg every 3 hours. It
did seem to cause her allergies to flare up (nose-rubbbing, sneezing, runny
nose) and mildly increased hand flapping, but that's about it. Cognitively,
she did seem more alert, more verbal attempts, and the day after her last
dose she did very well at school. Maybe if you lowered the dose a tad your
kids would experience fewer negatives?
Lisa
----- Original Message -----
From: <marib005@...>
To: <Autism-Mercury@yahoogroups.com>
Sent: Saturday, March 24, 2001 9:09 PM
Subject: [Autism-Mercury] Re: Status report on Kenny
> Cindy, Thanks for the update. Funny, I seem to be noticing some
> regressive behaviors at home and good progress at school with my
> Jack. (4, DMSA 50mg, ALA 25mg) I am starting to think the tv might
> be the problem. I have never thought tv watching could be such a
> physical activity. Thanks again Marianne
>
> --- In Autism-Mercury@y..., "persistentC" <persistentC@n...> wrote:
> > Listmates,
> >
> > We added ALA to Kenny's chelation protocol in January and just got
> his first stool results back. (It was hard to get a stool sample on
> the correct day, which is why we are almost 3 months into this before
> getting test results.)
> >
> > Kenny has been extremely hyperactive since starting the ALA. We
> have seen lots of regressive behaviors, but good progress with his
> schooling. Also LOTS of progress with articulation.
> >
> > I've attached a file showing the fecal metals results. He has a
> huge amount of arsenic coming out (1.64 with ref range < 0.3) , which
> is as expected, as I understand that DMSA alone doesn't really
> address the arsenic, but ALA IS a good chelator for it.
> >
> > Bismuth was also high (0.064 with ref range < 0.05) , and mercury
> was elevated, but not as high as I expected. (O.034 with ref range <
> 0.05) I'm sure that is because we are busy chelating out the arsenic
> right now.
> >
> > On another note, Kenny was hospitalized last week because he was
> completely blocked up. We had to flush him out with "GoLitely". Not
> a fun experience. He managed to pull one tube out of his nose, one
> out of his arm, popped open one tube, soaked the bed, and stayed up
> all night on the potty. (Guess who was there with him?) You should
> have seen me trying to keep all the lines and cords from getting
> tangled up, and running after him with a heavy cart as he roamed the
> halls of the hospital. (Staying quietly in bed was NOT on his
> agenda.)
> >
> > I don't believe the chelation contributed to the blockage problem.
> If anything, it seems to help in that regard.
> >
> > Cindy (Cary, NC)
> > persistentC@n...
> > http://www.rtphome.org/mariposa
>
>
>
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