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Re: afraid to continue chelation (long)

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Posted
Posted

Which of the Houston enzymes did you try? Some don't tolerate the bromelain and

papain but they have some without.

S S

> He did not tolerate Houston enzymes, they made his diarrhea much<br>

> worse. <br>

<br>

Did you try giving just the teensiest bit for a while? Most kids with<br>

the worst gut problems have an adjustment period with enzymes when<br>

things seem worse instead of better. Almost always lowering the dose<br>

helps. With my son it was 2 weeks of hell (behavioral mostly), for<br>

others as long as a few months. <br>

<br>

Apologies if I'm telling you stuff you already know or have tried, but<br>

I've seen Houston enzymes work miracles in so many cases.<br>

<br>

Maybe I'll<br>

> try dropping it to 3 or 4 mg of DMSA per dose. Gosh that seems like<br>

> such a pitiful amount, but I guess it's better than nothing!<br>

<br>

Oh yes. My son had a strong response to 6 mgs when he was a sturdy 5<br>

yo. For your little guy even a tiny bit will do something, and this<br>

whole process is about baby steps...<br>

<br>

Nell<br>

<br>

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Posted
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Wow! Increasing Vitamin C is one of the things we haven't tried yet.

Currently he is taking about 500 mg/day total, split into about 3

doses. I will try increasing that and see if it helps.

We've done 30 mHBOT rounds so far with no effect. So I guess we're

just going to finish up our 40 round package and then put it on hold

for a while.

Thanks,

>

> ; My son banged about 20 holes in the walls with his head around

> the time we began chelation. Andy told me to give him extra Vitamin

> C. Two and a half years and 55 rounds of chelating later, he has

> NEVER banged his head again. He's 107 pounds now and I give 125mg of

> vitamin C with every dose of ALA. I used to give it with oral DMSA

> which I stopped using about 6 months ago because I didn't think he

> needed it.

> I wouldn't be considering HBOT so young as brain cells will keep

> growing for awhile.

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Yes we too have depended too much on certain staples. You're right I

really need to rotate things more, especially now that he is

swallowing pills we have more options.

> > >

> > > Hi folks, looking for some advice. We did two Cutler protocol

> > rounds

> > > of DMSA a few weeks ago on my son with very bad results. He is 28.5

> > > lbs, very high porphyrins, meets counting rules. We used 6.25 mg

> > per

> > > dose. He reacted horribly, with zero positives and TONS of

> > negatives

> > > which continued while off the rounds. Severe yeast despite Diflucan

> > > plus GSE, a combo that has always worked in the past. Stopped

> > > sleeping, started violent head banging all night long. All of his

> > > stimmy and OCD behaviors worsened, and his gut totally fell apart.

> > He

> > > is a " gut kid " but we finally had it under control before starting

> > > chelation and were getting fairly good poops for weeks. But on DMSA

> > > he instantly imploded. Severe yeast and bacteria and constant

> > > diarrhea again, often a lovely shade of yellow. One month after his

> > > first round we now just barely have a handle on the yeast again, and

> > > the bacteria is back big time so we're having to go back on

> > > antibiotics which we'd managed to avoid these last 3 months. He

> > > continues to wake up multiple times during the night and during his

> > > nap, and the head banging has continued too, seems like he won't

> > > " unlearn " it. We had to move him to a playpen.

> > >

> > > I'm pretty devastated and quite honestly scared of doing another

> > > round. But he is so severely autistic and so obviously toxic! We

> > > have tried so many biomed interventions these last 6 months, even

> > the

> > > crazily expensive HBOT, but he is a non-responder. We just got a

> > > bottle of Neutrophil Plus so I'm going to start that as soon as we

> > > finish this round of antibiotics. But even if he tolerates that --

> > > always iffy since he is highly allergic or intolerant to many foods

> > > and supps -- I'm still distrustful now. I'm thinking gee, last time

> > > he learned how to nearly give himself concussions all night long,

> > what

> > > will he learn this time?!! He is breastfed and I have 4 amalgams so

> > > we can't risk trying ALA, and we're chelating without a doc (our doc

> > > is *massively* against this protocol and I think would try to kill

> > > us!!), so DMSA is our only option right now. Do we just wait and

> > try

> > > again when he's older and maybe his gut is a little better? Do we

> > > wait until doc thinks he's ready and try the TD-DMSA the doc

> > prefers?

> > > I know there may not be any answers here, but I'm at a loss and

> > > really need some input. Or maybe just a few shoulders to cry on, I

> > dunno!

> > >

> > > Sorry so long,

> > >

> > >

> >

>

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Posted
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Yeah he's allergic to coconut, and didn't tolerate coconut oil. Such

a shame since I've heard such great things. He was fine with MCT oil

(contains capryllic), but I stopped it after 2 weeks because it didn't

seem to do anything. I'll have to try it again.

> > >

> >

> > > My son hates to be touched, and prefers to spend most of his time

> > > stimming, but he LOVES to cuddle up with me when nursing. He stares

> > > at me, plays with my face, giggles. He's actually content and

> > > relaxed, even happy, and often interactive. I will reserve final

> > > judgement until I see the results of the breastmilk testing

> (Doctor's

> > > Data), but I am very very loathe to give up something so precious.

> > > He's like a different child when nursing.

> >

>

>

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Posted
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I started by using this tiny scoop I have, which I think is a little

less than 1/16 of a teaspoon. I worked up pretty slowly and used the

enzymes for 3 months. I never saw any positives. I honestly can't

tell you when or how badly the diarrhea was affected, because when we

started enzymes he was already having diarrhea ALL the time. It

wasn't until I removed the enzymes (shortly after a round of

antibiotics) and his diarrhea immediately cleared up that I realized

the negative contribution of the enzymes.

It will be interesting to try enzymes again sometime when his gut is

at a better place for a little while.

Wow it's unbelievable that your 5 yr old reacted strongly to 6 mg! I

guess we should have started lower. Yeah I think " baby steps " is how

we'll need to approach this in the future.

>

> Did you try giving just the teensiest bit for a while? Most kids with

> the worst gut problems have an adjustment period with enzymes when

> things seem worse instead of better. Almost always lowering the dose

> helps. With my son it was 2 weeks of hell (behavioral mostly), for

> others as long as a few months.

>

> Apologies if I'm telling you stuff you already know or have tried, but

> I've seen Houston enzymes work miracles in so many cases.

>

>

> Maybe I'll

> > try dropping it to 3 or 4 mg of DMSA per dose. Gosh that seems like

> > such a pitiful amount, but I guess it's better than nothing!

>

> Oh yes. My son had a strong response to 6 mgs when he was a sturdy 5

> yo. For your little guy even a tiny bit will do something, and this

> whole process is about baby steps...

>

> Nell

>

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Posted
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AFP Peptizyde, No Fenol, and Zyme Prime.

>

>

> Which of the Houston enzymes did you try? Some don't tolerate the

bromelain and papain but they have some without.

> S S

>

>

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Posted
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Ouch. Well we've done NCD off and on for 3 months. We're currently

at 10 to 12 drops per day. I've never seen anything, positive or

negative, except perhaps more yeast (but hard to tell, ds is always

yeasty). I have two bottles left so I guess I'll just keep increasing

the dose every week and see if anything happens.

> >

> > ,

> >

> > Maybe look into the NCD?

> >

> > Barb

> > >>

>

> worth a try IMO. mine put his head through sheet rock before NCD

>

>

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