"Treat the cause, not the symptoms"

iVillage Member
Registered: 04-01-2003
"Treat the cause, not the symptoms"
12
Sun, 02-19-2006 - 8:35am

I just came across this link: http://www.rxfreekids.org/ -- Has info on helping to get behind what might be going on w/ our kids...

I found on a school cafeteria lunch program's website --http://www.naturalovens.com/

HTH,

Meg

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iVillage Member
Registered: 06-25-2003
Sun, 02-19-2006 - 1:58pm

What if the cause is genetic?

How does one treat that?

-Paula

-Paula

visit my blog at www.onesickmother.com
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Registered: 04-01-2003
Mon, 02-20-2006 - 8:45am

Many illnesses believed to be genetic are treatable. For example, evidence is showing that children who have ASD have a gene called the MTHFR in which a polymorphism occurs (affects 15-20% of the population). This mutation puts the child *at risk* for ASD and other behavorior/learning disorders. It normally takes an environmental insult, such as the vaccines which contain mercury (thimerisol) to trigger the disease. The gene becomes unable to perform its function normally after it is exposed to specific toxins. Mercury is a known neurotoxin, and since our children received such high doses of it in their shots, that is why we saw an explosion of ASD, ADD, and related disorders. There is no such thing as a "genetic epidemic" but there CAN be children who are genetically more PRONE to a certain illness than others. Sensitivity to thimerisol (AKA heavy metals)appears to be due to certain genes and their respecitve proteins, and many scientists believe that other epidemic disorders (asthma, diabetes, MS, ALS) may one day be linked to heavy-metal exposure as well. (pg 407, "Evidence of Harm" by David Kirby)

Thousands of parents, who initially were told that their ASD children had a "genetic illness" for which there was no cure, have tried methods that worked, and their children are now CURED. Chelation (metal detoxing), diet, b-12 injections, Cod Liver supplements, the list goes on... there IS a cure for this illness - many scientists believe that the majority of autistic spectrum disorders are actually mercury poisoning.

Take care,

meg

iVillage Member
Registered: 06-25-2003
Mon, 02-20-2006 - 9:02am

Meg,

Assuming what you say is true: The cause is genetic, the trigger environmental. However, even in that scenario, one would be left addressing symptoms. The only way I can see to actually treat the cause; is to turn back time.

I don't accept that autism or any neurological differences can be "cured", especially by experimental or unproven ...anything. I think some people may be helped, by some of it. I think some people can be hurt by some of it. And there are those people who may learn to 'pass' for normal over time.

In my mind, a neurologic difference is a neurologic difference. No-one can change the way one thnks.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-01-2003
Mon, 02-20-2006 - 10:28am

Paula,

I just wrote and epic response and it got erased, so here is the jist of what I have begun to believe is "wrong" w/ my twins:

I have suspected since 1998 when my twins were born, that vaccines containing Thimerisol could hurt them, but thinking that there's no way the government or pediatricians would be pushing something unsafe on my babies, I fully vaccinated them. IN addiny up the total amount of mercury they recieved on any given "shot day", the amounts dramaitcally surpass the EPA "safe" limit - CDC, AAP, and other agencies failed to calculate the levels that were being increasingly injected in to our kids. Its unthinkable, but its a known, proven fact. Mercury is a neurotoxin, which causes neurological damage when it gets into the brain. When it is removed (chelation is a common method) the neurological health usually improves, some children even lose their dx and become "normal" again.

Vaccine Links To Autism?

June 22, 2004 http://www.cbsnews.com/stories/2004/06/22/eveningnews/main625458.shtml

Alex Donnelly had abnormal levels of mercury in his body; his father thinks there's a connection between vaccinations and the autism he developed. (CBS)
QUOTE

As kids got more and more vaccines over the years, more mercury came with them -- in amounts way over safety limits. The CDC has long claimed it's not the cause of autism or related disorders ...

(CBS) Because Alex Donnelly is autistic, he can't communicate normally or lead a normal life.

Yet he has some amazing abilities. When asked what the capital cities of Turkmenistan and Venezuela are, he can answer "Ashkerbad" and "Caracas" accurately.

His father claims Alex wasn't autistic - until he got certain vaccinations containing a mercury preservative.

As kids got more and more vaccines over the years, more mercury came with them - in amounts way over safety limits. The Center for Disease Control and Prevention has long claimed it's not the cause of autism or related disorders, and mercury is still in flu shots recommended for babies this fall, reports CBS News Correspondent Sharyl Attkisson.

A half dozen childhood vaccines still have mercury,but the shots most kids get have little to none, so flu shots this fall are the biggest outstanding issue.

Does the amount in a flu shot matter? The theory is yes. In genetically susceptible children, even small amounts of mercury can damage the brain and the mercury buildup is cumulative in those children who lack the ability to shed it.

The flu shot is particularly important because babies will get it twice the first year and then continue getting it once a year thereafter. There are 25 micrograms of mercury in a single flu shot. Compare that to the current safe levels of mercury most kids get in their cumulative vaccinations in 2004 which is something like .4 micrograms all together over several years.

Nobody makes the claim that all ADD and autism cases are caused by the mercury in vaccines. But many researchers believe it plays a large role in our epidemic of the 1990's.

But now, a landmark study by Dr. Mady Hornig, from the Mailman School Of Public Health, Columbia University, is adding to the mercury worries, as Attkisson finds out.

Hornig injected a strain of mice with genetic tissues similar to those found in children with mercury-laden vaccines equivalent to what kids got in the 1990's. The mice developed profound brain problems.

So what types of behavior did Hornig see in the mice, and how does that compare with what we call autism? Dr. Hornig answers, "All sorts of strange behaviors that were repetitive in nature, where animals would just keep repeating the same behavior in a very stereotyped fashion."

It wasn't just repetition -- the mice withdrew from their surroundings like autistic children. They resisted change and developed brain abnormalities affecting emotion and thinking, also like autistic children.

Alex's father, Jim Donnelly, says it only confirms what he's believed all along: most kids aren't harmed by mercury in vaccines; they shed it naturally, but some retain it, and it poisons their brains.

Says Donnelly, "When (Alex's) testing came back, he had mercury levels that were 20 times the EPA safety margin residing in his body. It was unbelievable."

Other scientists and the CDC dispute such a link. But if it's true, hundreds of thousands of American kids could be living with the fallout. And the results could be devastating to vaccine makers and federal health officials who have steadfastly defended the use of mercury, a potent neurotoxin, in childhood vaccines.

By Sharyl Attkisson©MMIV, CBS Broadcasting Inc. All Rights Reserved.

*******************************************************************

http://www.bioprobe.com/ReadNews.asp?article=27

http://www.generationrescue.org/

http://www.mothering.com/articles/growing_child/vaccines/toxic.html

http://www.mothering.com/articles/growing_child/vaccines/biochemistry.html

http://www.mothering.com/articles/growing_child/vaccines/poison.html

Watch some of these (the first one is pretty technical, but the
others are good - try Dr. Boyd Haley & Dr. Anju Usman):
http://www.autismmedia.org/media2.html ** You may have to right
click over which player you would like to view the video in, and
click "open" - use "high" for DSL & cable.

http://healing-arts.org/children/

http://www.safeminds.org/

Take care,

Meg

iVillage Member
Registered: 03-26-2003
Mon, 02-20-2006 - 10:45am

I am with Paula on this one. Though I agree that certain kids are genetically predisposed and then some sort of environmental trigger sets things in motion, I also don't believe in "cures". But I do believe some of this will help, I just don't think (through personal experience) that you can totally take the autism out of the child.

Now, to explain, my kids were on meds and they have been totally taken off. They are on a organic low/no sugar diet adn it has helped but they are still autistic. The vast majority of kids I have known who have tried these various types of methods are definitely helped but they are not "Cured" nor am I sure I want my kids completely cured or changed. That is a tough one. I definitely would like to remove all the struggles they deal with and leave thier wonderful personalities and strengths.

I also think we have to be very careful with the kinds of treatments that we use with our kids under the heading of natural alternatives. Cheletion is not something to be taken lightly. There has been at least one death while under the supervision of a doctor. There is not scientific, peer reviewed, control group studies that show a definite value in using chelation for kids with autism.

Now I agree that thermerisol is bad. I agree we should not give it to our kids at all. I separate vacinations and check thier vials to be sure they don't get thermerisol. I don't give things like the flu shot because of it, but at the same time there are more and more studies coming out that they are not finding a signficant cause for alarm with shots. I think alot of it is our environment but I don't think we can blame shots exclusively. I think the thinking behind the shots and autism increase was a good beginning but I think there are far more common agressors to our kids in the environment than just shots. Perservatives, food that does not contain the nutrients we needs, chemicals in our food, chemicals in our house, chemicals galore in everything. It can't be good for you.

I have seen improvements in my kids with the methods I have used but I think we need to stop prior to the word "cure". There is yet no scientifically proven cure. There are a variety of therapies and interventions we can use. Many of these (like diet) are life long or at least long term but they do not change the initial genetics of the person with autism and often do not eradicate all the autism symtpoms. And stress and overstimulating environments can still cause an increase in autism symptoms here even with the same dietary and supplement intervention.

Renee

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iVillage Member
Registered: 04-01-2003
Mon, 02-20-2006 - 11:39am

Renee,

I agree about the use of chelation - proceed only under the supervision of a MD, and with caution. Our Dr. will not subcribe it w/o the child's gut being healed first, or without alomst perfect blood work. This being said, if our son's heavy metals come back at levels above normal or "safe" we will consider chelating. ASD kids usually have mercury "pour" out of their bodies w/ the use of DMPS or DMSA (FDA approved, btw, for lead poisoning. These proteins bind to all heavy metals in the body, which are then naturally removed via urine & stool). It will also remove iron, which is one of the reasons it is so important to have good health before embarking on chelation. There are myriad other methods to try in removing metals from the body if parents are looking for alternatives to chelation.

Cure or no cure, to me trying something experimental or contraversial may be itimidating, but its how most treatments start out and go on to be "approved" by the FDA. Not that I have ANY confidence however, in the FDA - they also "approved" Thimerisal without even ever testing it. Crazy, but true. If my son's life can improve, albeit a slight risk (as there is with just about ANY rx medication), we are goind to try it, as long as we have medical support, which we do. And there's a growing community within the medical world that is supporting these treatments and pressing for government approval. Btw, more studies (effective, "good" studies) are in fact showing MORE proof of a thimerisol-connection. The studies which undermine this link are shown to be flawed, tinkered with, and essentially "junk science." And, mostly epidemiological. Both sides of this debate however, are calling the other "bunk" so the fight continues - the drug companies and the government's reputation has MUCH to lose if this link is ever publically accepted, thus the vehemant denial that continues. I highly recommend a book if you are interested in this debate - "Evidence of Harm" by David Kirby - its very disturbing but highly enlightening.

We will be finding out what our more severe twin's blood/hair/urine analyses show when we go in for our next appmnt and look at the test results we recently had done. I will let you all know what we find out! ;) I just have this gut feeling that he will have high metals.

Take care,

Meg

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Registered: 03-26-2003
Mon, 02-20-2006 - 1:02pm

OH I have NOOOO faith in the FDA. A doctor wanted to put my son on a medication that can cause heart attacks (QT prolongation actually) in some cases and that was FDA approved. In fact the warning on it said only for severe cases of schizophrenia when no other medication has worked. And yet I filled the perscription without a problem for a then 7yo. If you have ever tried to fill a persciption for ritalin you will know what a farce it is that mellaril was easy to fill. I didn't even hear or know anything about that until I saw the warning on the packaging. Needless to say I never gave it.

I also have little faith in medical doctors and autism anymore (see above for one reason).

My resistance and concern with any new treatments comes not only from safety as far as FDA but from the extreme number of autism "cures" that have been advertised or recomended in the past 20 years or more.

I started working in the autism field prior to my kids births (I know odd, huh, I have 2 ASD kids out of 4). I have been around to see the first round of Facilitated Communication come around and the fall out from that. I have seen parents when I worked in a residential school try all kinds of things to cure thier kids. Swimming with dolphins, FC, what was that pig hormone a few years back....Began with an S, mega vitamins, GFCF, sensory deprivation thing someone tried, RDI, and there have been many more. Chelation to me is the newest of these. Some work better than others. Some have some good points and are a start and some are complete bunk.

Unfortunately in many cases there are so many things that promote the next possible cure for autism and so far there is no cure. We are getting closer to the whys and hows and helping some kids lead a more independent life but we don't have it totally down yet. Something will work for some kids and not others. We just can't point yet to what exactly will work for what kid. Frustrating as that may be.

Not that I think chelation and diet are wrong or useless, but I don't believe it will be a cure either.

Renee

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Registered: 04-01-2003
Mon, 02-20-2006 - 3:37pm

Yes, so many things to try -- we are currently on the GFCF (able to "cheat" w/ enzymes). What is exciting to me is that there ARE things to try yet I would have never known about them if I hadn't done my own research. I tend to think that pediatrician/family dr's could be doing a better job pointing us parents in a more productive direction. Any of these treatments may not be the Magic Pill, and I honestly do not expect my twins to be "cured." It gives me such a fresh feeling of hope however, to hear testimonials of parents who were absolutely skepitical at first when embarking on particular treatments, yet being dumbfounded when their children showed such incredible improvement almost right away. I realize this is not every parents' account, but just knowing that is has and is happening gives me reason to think, hey, what about my boys, could this work for them? The diet has been incredible - we saw such rapid changes in their behavior, eye contact, anxiety levels, and overall calmness of presence. And people have taken notice - close friends, family & school teachers have seen what we are seeing at home. They are not cured but I wish I had known about this diet years ago. They are now 7, and in no way is it too late to try anything, but I just wish I had the information back when I needed it most.

Thanks for your kindness in discussing this issue, I know how emotive these issues can be :)

So what has worked for your children? What are you trying, or considering trying, if anything?

Meg

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Registered: 03-26-2003
Mon, 02-20-2006 - 7:47pm

Thanks for your kind words Meg. It can be an emotive issue. One I don't mind discussing at all if we have a nice intelligent conversation like we have had here. I fully expect and love to hear that some of these interventions have worked for some kids. I truly wish we could find something for all of them.

For us, currently the kids are on an organic/ low or no sugar diet. no chemicals, preservatives, etc. They take supplements as well (omega 3, acidopholus, etc. Adding enzymes next) They go to a clinical psychologist for social skills/play therapy. Cait does hippotherapy. Mike is in karate with support (from me. I am his aide for outside things). They also have the usual school supports. Mike is in a special day class with a 1:1 aide, ST, OT consult, Autism consult. Cait is in a middle school aspergers program with an aide and ST.

Mike got SI clinic therapy last year. That was helpful. We do alot of ABA, social stories and TEACCH type interventions at home as well. We also do alot of sensory stuff at home. I have practically my own sensory gym in our playroom.

Next I am considering trying adding digestive enzymes. I don't do mega vitamins with the kids as overdoing some of those like b-6 concerns me. I have tried some vitamins that haven't helped. I am for now down pretty much to omega 3's, acidopholus, a good multi and epsom salt baths for Mike. They get alot of other nutrients in thier diet. I try to make sure they get lots of natural C and anti-oxidants. We often have smoothies with organic blueberries, etc in it.

I have recently found a study for kids with HFA/AS using neurofeedback at a nearby university. It doesn't work with our current schedule but I am looking into it for this summer. There is also a group around here that does social skills groups for ASD kids. I have heard various reports about it. My insurance is covering those groups now so I am considering it but I don't want to waste my time.

I also find therapy in everyday type stuff. mike is in Karate specifically to work on motor/sensory skills and social skills. His sensei has been informed of the differences and I go to each class and play his aide. I take the kids swimming ALOT in the summer for the sensory skills it helps. He was in basketball to work on social skills. It was a challenge but I think he learned from it, lol.

I am working for an OT and this summer we are doing summer camps with an SI base so I may put the kids into that (depending on how much of a discount they give me, lol). I recently found out that regional center may have a program where someone going into activities with the kids and doing social coaching.

Renee

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Registered: 04-01-2003
Tue, 02-21-2006 - 11:23am

Wow, I guess the question should have been what are you NOT doing??!! :) I am impressed by your commitment and stamina. I hope to feel that I did everything that I could for my boys when I look back over these years... you're an inspiration!

I have heard incredible things about ABA. Fortunately the school my twins attend is fairly versed in ASD teaching methods, and very oepn to trying new things as well. We have their IEP tomorrow... things have gotten just SO much better over the last 2 yrs -- their efforts are paying off. I feel so overwhelmed with love so often for those special teachers - OT, ST, TSS, and special ed teacher. They are so wonderful, and dedicated to our twins' success.

FYI, if you're still looking where to buy, we ordered our enzymes online from Houston Nutritionals, the chewable form -fruity and the kids really like them -- about $22 for a good sized bottle.

Thanks for sharing all of that, it helps tremendously to hear what others are doing.

Take care,

Meg

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