RE: Re: new to group..have question Sorry long reply

[Guest guest]

I doubt that anyone suffering from nerve damage would benefit from chelation. Chelation doesn't repair nerves, it just removes mercury. I understand your frustration with the Pfeiffer Inst. It seems that there are countless tests, treatments, and therapies to spend your money on. We parents are left to weed through it all. We got the Dx nearly six years ago and we agonized about doing chelation. Back then, locally, there was only one doc who did chelation, he had never chelated a child and he used IV. We decided not to do it for safety reasons. We have researched everything we could about practically everything and finally decided to chelate last fall. We are seeing dramatic improvements. We worried that we waited too long, we worried that we shouldn't do it all because of the reports of it causing harm coming out, etc, etc. Now, I glad that we did it. I know it isn't a cure, any more than insulin is a cure for diabetes. It is a treatment, and barring any more heavy exposure, we won't have to do it much longer. I would never go into such a thing lightly, unfortunately, I signed a few releases for vaccines without checking out adverse affects beforehand, and I won't make that mistake again. I appreciate your opinion, I just disagree where chelation is concerned. I consider myself a very cautious parent where my son's health is concerned. Chelation has been approved for removal of heavy metals. Do we know the long term effects? No, but My son is getting better in every way. I'm looking to the day that I'm gone. Who will care for him? Someone in a group home who gets paid minimum wage? Will they care? I'm not willing to risk it. There are no more risks with chelation than there are with Adderall, Ritalin, Strattera, and all those other drugs bombarding the commercial airwaves. I understand where you're coming from, there are many who jump bandwagons looking for a cure, I don't think a cure exists, but I see my son improving and that is all the evidence I need.

----- Original Message -----

From: pcrawfo1

Sent: 2/28/2006 6:45:13 PM

Subject: [ ] Re: new to group..have question Sorry long reply

,I wasn't implying GFCF meant "allergy" I merely stated that we had our daughter tested and she turned up allergic to wheat, dairy, soy, etc...After eliminating her food allergens many of her behaviors resolved as well. Just as with myself when my allergies act up, I do feel like crap...and you can't live the rest of your life on Benadryl daily. We originally started down the biomedical route...we had our daughter tested at Pfeiffer Treatment Center in Chicago...of which all of her labs fell in the "normal range" however they had an "ideal" normal range for autism and wanted us to buy their megadose vitamins..Pfeiffer could also not guarantee me that she would not regress or recoup as quickly as she could potentially lose it once we started her on the doses. What an incredible waste of $1500.oo looking back on it. We chose not to chelate after I spoke with a woman who had had nerve damage following her Hepatitis vaccine..she was around 20. She was actively chelating and when I questioned her whether she felt any different, had any symptom relief (she had noticeable difficulties walking), she stated when she was actively chelating she felt like crap. When she stopped her chelation cycle she returned to the way she felt prior to chelating. None of her physical disabilities resolved whatsoever and no symptomatic relief. This was the only person who could actually articulate to me how it truly felt to chelate herself. I just don't see the benefit, especially when a young child cannot articulate to you how he/she feels. I've seen and talked to too many people who after they've chelated (some for years and faithfully) their child isn't any different. Especially when the parent only chelates...no other intervention, while hoping for that miracle cream that will help. I work in the medical field, it worries me about the long term effects of chelating a young child. Liver Ca, Kidney disease...maybe not now, but nobody can state for certain what the long term effects of chelation are. Nobody. If you truly believe the Mercury theory (which I feel is plausible enough that I didn't vaccinate her younger siblings) Mercury damage is irreversible. You can't get back what was already lost, however you can train other portions of the brain in young enough children to compensate for the damages. Not to mention that mercury causes just as much damage coming out as it did going in. And it is removed incredibly slowly (nature of the beast) That is why I am such a big proponent of ABA.We follow the GFCFSF diet. GFCFSF were also things she was allergic to. The other items we eliminated as well. So I can't say it was strictly the diet or the elimination of her allergens because they are one and the same. Without the testing we would have continued to give her nuts and soy...both of which were huge allergens for her and I am assuming would have seen little difference in her behaviors. To this day if she gets tree nuts she proceeds to scratch the skin off her legs all night....no hives...just SIBs. And an infraction especially with nuts will be problems for us for 3 weeks... You're right you don't need to do the testing but if there are additional problem areas it will help pinpoint them. Besides as anyone else following the diet...what else is more intimidating than wheat and dairy free...that is almost everything we "normal " people eat. Allergen testing was $150.00 Work up at Pfeiffer was $1500.00...And the allergen testing was covered by insurance.Patty> Patty,> We also went the allergist route and it turns out she was allergic > to wheat, dairy, soy, tree nuts, etc... her stims and nightwakenings > and loose bowel movements decreased tremendously. I know some > people have had great success with the biomedical route, however I > also know many who have seen no success. I guess what I am saying > is don't put all your eggs in one basket looking for the "cure". > Put your son in as much early intervention and one on one therapy > that you can afford. There is a great school Middleburg Early > Education Center that has great programs for preschoolers. Once > your son turns three, you can utilize the autism scholarship to pay > for school, an ABA program, tutors, speech, pt ot. I truly think > that was the key for our daughter vs any diet/supplements. ABA has > kind of gotten a rough name from a lot of local people who truly > believe it to be just the "Lovaas" style of DTT. There are many > subgroups of ABA such as Verbal Behavior, RDI, and of course DTT all > of which have their pros and cons depending on your child and > his/her learning style/needs.And if you do decide to pursue the ABA > route, make sure you ask around to get a good consultant. There are > a lot of people without credentials who have hopped on the autism > wagon to make a quick buck. I have heard positive things from > families who use Monarch's home program, and I personally hired a > consultant who drives up from Columbus. A lot of parents wait too > long to start an intensive program and their is a window of > opportunity prior to the age of six where the child will make the > most gains that will benefit them lifelong. > Patty> > > > > > > __________________________________________________>

[Guest guest]

I agree---if it's done slowly and cautiously, then I

think it has lots of benefits. My concerns are about

the long term effects of having an overload of heavy

metals in your body and not removing them. I have

heard of mercury exposure being linked to Alzheimer's,

MS, asthma, cancer, etc., etc. Makes me want to run

out and get all of these fillings out of my mouth so I

can be around and healthy to be the mom that I need to

for my kids.

Laurie

--- " rmaher1969@... "

<rmaher1969@...> wrote:

> I doubt that anyone suffering from nerve damage

> would benefit from chelation. Chelation doesn't

> repair nerves, it just removes mercury. I

> understand your frustration with the Pfeiffer Inst.

> It seems that there are countless tests, treatments,

> and therapies to spend your money on. We parents

> are left to weed through it all. We got the Dx

> nearly six years ago and we agonized about doing

> chelation. Back then, locally, there was only one

> doc who did chelation, he had never chelated a child

> and he used IV. We decided not to do it for safety

> reasons. We have researched everything we could

> about practically everything and finally decided to

> chelate last fall. We are seeing dramatic

> improvements. We worried that we waited too long,

> we worried that we shouldn't do it all because of

> the reports of it causing harm coming out, etc, etc.

> Now, I glad that we did it. I know it isn't a

> cure, any more than insulin is a cure for diabetes.

> It is a treatment, and barring any more heavy

> exposure, we won't have to do it much longer. I

> would never go into such a thing lightly,

> unfortunately, I signed a few releases for vaccines

> without checking out adverse affects beforehand, and

> I won't make that mistake again. I appreciate your

> opinion, I just disagree where chelation is

> concerned. I consider myself a very cautious parent

> where my son's health is concerned. Chelation has

> been approved for removal of heavy metals. Do we

> know the long term effects? No, but My son is

> getting better in every way. I'm looking to the day

> that I'm gone. Who will care for him? Someone in a

> group home who gets paid minimum wage? Will they

> care? I'm not willing to risk it. There are no

> more risks with chelation than there are with

> Adderall, Ritalin, Strattera, and all those other

> drugs bombarding the commercial airwaves. I

> understand where you're coming from, there are many

> who jump bandwagons looking for a cure, I don't

> think a cure exists, but I see my son improving and

> that is all the evidence I need.

>

>

>

>