Andy: Re: Lack of progress,

[Guest guest]

Andy,

The idea of using anti-seizure meds scares me enormously. I know

being scared doesn't help anything, but nonetheless.

I have found a new doctor who will likely be amenable to ordering

pretty much anything I want. Should I push for a 24 hour EEG (the

standard here will be 20 minutes). If a 24 hour EEG shows completely

normal would you still recommend the anti-seizure meds? I suspect it

will be difficult to get these meds if the EEG shows nothing.

Can seizures be virus related or would the timing of my son's visible

seizures (during antiviral measures) be simply coincidental? The

visible seizures have stopped each time I've discontinued the

antiviral measures.

My son has had three hair tests since his regression. I would be

happy to post them if you think they might shed some light. In

general, toxic metals continue to move up as expected because of

chelation. Essential elements are erratic although he doesn't meet

the counting rules.

I'm sorry if my response sounds like I am in denial. Your response

took me very much by surprise.

Most gratefully,

Anita

> >

> > Listmates,

> >

> > My son, who will be four in February, has been chelated 50

rounds, had

> > one viral protocol, 80 HBOT dives, numerous supplements,

different

> > diets.

> >

> > We have seen great progress. But, sadly, we have lost almost all

of

> > the gains we've made. This was painfully obvious during the

Christmas

> > holidays. As difficult as it is to admit, ds is nowhere near the

place

> > he was about 6 weeks after our first intervention almost two

years ago,

> > going GFCF (as with all things, almost all the gains disappeared)

> > although he is still better than right after his regression--

that,

> > however, isn't saying much.

> >

> > I am hoping to get some feedback on particular issues so I can

make

> > some decisions. Forgive my very long post.

> >

> > Chelation: we have chelated AC protocol DMSA/ALA for 50 rounds.

We

> > have not seen any gains from chelation since the initial 10

rounds. Is

> > it possible that we are still in the plateau period? Testing

shows

> > that ds is excreting (lead, mercury, antimony, aluminum, all the

> > usuals). There is a great deal of talk about kids who don't

tolerate

> > the sulfur chelators. Is is possible that someone could build up

an

> > intolerance that would manifest as lack of progress? Am I just

being

> > impatient?

> >

> > Viral issues: our viral protocol gave us some good gains, most

of

> > which slowly disappeared after 3 months. I am unwilling to do

another

> > viral protocol without taking some steps to try to ensure that

hard-

> > earned gains won't be lost. Instead, I decided to try NCD based

on

> > some parent reports that it is doing something virally. I used

it for

> > only 9 days and had built up to 4 drops/day on the 9th day. At

that

> > dosage, my son started having absence seizures (as he had done

during

> > our last viral protocol) and also very large blisters appeared on

the

> > palms of his hands. I had thought we had let him burn himself

somehow

> > and he hadn't felt pain and consequently hadn't cried--but in

> > retrospect these were not burn blisters. The palms of his hands

were

> > about 1/5 covered in these blisters. His entire palms peeled as

did

> > his toes a few days later.

> >

> > HBOT: 80 dives at 1.5 ATA 100% oxygen. Again, almost all gains

> > completely lost.

> >

> > GUT ISSUES: ds still struggles with constipation. Testing shows

that

> > in spite of supplementation, many nutrient levels are still very

very

> > low. GFCF worked briefly and spectacularly and then didn't. A

second

> > trial of it showed nothing except a lot more yeast to deal with.

Low

> > protein, low glutamic acid diet showed now improvements. LOD

gave huge

> > constipation but no improvements (it was a short trial, but ds

has no

> > markers of a good candidate). We use houston enzymes. Finally,

I will

> > be going SCD in a few weeks but with little optimism.

> >

> > SUPPLEMENTS TRIED:

> >

> > Calcium, magnesium, zinc, Vitamins C, D, E, K, B (all of them),

CLO,

> > fish oil, colostrum, houstons enzymes, epicor, adrenal support,

tons of

> > probiotics, candex, GSE, OoO, phosphatidylcholine, evening

primrose

> > oil, taurine, custom amino blend, s. boulardii, selenium, moly,

CoQ10,

> > milk thistle, vanadium, chromium picolinate, transfer factor,

heme

> > supps for iron, biotin, AKA, virastop, laurcidin, elderberry,

> > inflammation control, melatonin, l-carnitine, and probably some

others

> > I've forgotten.

> >

> > We sometimes see gains but they rarely last. Journals and ATEC

prove

> > this.

> >

> > DS is still very much in his own world, non-verbal, non-engaged

with

> > his family. He is affectionate with me, sleeps better than

before, and

> > has a few splinter skills. I do know this is a long haul for

most of

> > us, and I'm not expecting overnight miracles. I would truly

appreciate

> > any comments or suggestions people might have on the information

I've

> > provided here.

> >

> > Most gratefully,

> >

> > Anita

> >

> > A special message for any anti-biomedical trolls who might be

reading

> > this with sanctimonious pleasure: sod off.

> >

>