PCPS Linked with Autism/Thing1

peagreen · 03-25-2004, 09:16 AM

Hi,

I read you post about a possible link between autism and PCOS

I was diangosed with PCOS while TTC my son. I was placed on Metformin and was pregnant with a few months. I remained on Metrformin for the first trimester.

I'm interested in your post because my son was diagnosed with PDD (NOS). Would you mind to share your research on this subject or links/resources where I might find some of this information.

You mentioned in your post that women with PCOS have benefited from the introduction of the same supplents and those with autism. My son is currently taking many supplements including many of the ones you listed but I'm also interested in taking these supplents myself if they have proved theraputic. Any information on this topic would be of great interest as well as any dose information you might have.

I would be very grateful if you could send me a note either posting on this thread or e-mailing me at paulagreen@earthink.net. I would also be interested in comparing notes and brainstorming with you about this. Look forward to hearing from you. Thanks.

Paula

thing1 · 03-26-2004, 01:30 PM

Paula,

I just erased my reply to you. GRRRRRRRRRRRRR!!!!!!! Anyway, I'm already so pressed for time this week, I will try really hard to post again next week, probably next Friday with some new info.

I'm so sorry, iep is coming up and everything else that qualifies as a major catastrophe, you know how it is... I promis I will get this info to you soon!!

Thanks,
Suze

sugarbug · 03-26-2004, 03:05 PM

My son's autistic... basically the link between PCOS and Autism is the X chromosome. In some cases of autism it is caused by something called fragile X syndrome, in PCOS some women have PCOS because of Syndrome X. Both have to do with a deformity of the X chromosome itself. At least that's what I've heard... but I should also add that my son's autism was not caused by the fragile X syndrome, and my PCOS has not always been under the syndrome X form. So, I think it's more of a theory then an actual fact. But if anyone has some actual studies on the two- I would love to read it!

Bug

peagreen · 03-26-2004, 06:16 PM

Hi Ladies,

Thank you for your replies. My son was checked for Fragile X and was found to be negative

Recently, our son's DAN doctor (Dr. Kartzinel in Florida) informed us of some recent studies linking autism to exposure to heavy metals when there is a certain gene mutation and how this results in distruption of the methylation pathway. You have probably read these studies (one out of Johns Hopkins and other reputable institutions and another out of Japan that had the same findings) and if not I can send them to you.

Dr. Kartzinel hasn't given us the details but plans to do genome testing. He said that 90% of autistics have this gene mutation. He also said that there are some exciting therapies to address this. We have just started meth/B12 and TMG but I guess there's something really new. I'm sure it will be a hot topic at the next DAN conf. in DC.

I'm just wondering if this is linked somehow with a genetic mutation involved causing PCOS. Love to hear your input.

Paula

Tas · 03-27-2004, 08:41 PM

It was my quest to find out what was wrong with my son, which turned out to be partly Asperger's Syndrome (high-functioning autism) that led me to recognise my own PCOS.

First we found he is very bright and thought he just needed higher level work. That didn't help and he was suspended indefinitely from school for disruptive/violent behaviour. The paediatrician wanted to put him on ADHD meds, but I held off as I was doing an elimination diet with him (paediatrician was not impressed :o). He didn't improve from anything we eliminated and his mood swings actually became more frequent. I realised when we had eliminated everything we were supposed to, there was a lot of sugar and whites left and started looking into blood sugar/insulin. That led me to realise my own problems in that area.

He is now home-schooling and doing really well on a whole-foods diet. We particularly need to watch that he eats frequently enough when he is playing a lot of sport.

Many autistic people do well on a dairy and gluten free diet. We didn't notice any improvement with Kieran being off them for a couple of weeks - maybe if we'd gone longer. I have found that I do better without dairy and grains.

I have also read a lot about autism being linked to vaccinations - particularly the mercury in them. The speech problems he had and his bad behaviour both coincided with having MMR vaccinations at ages 1 and 6.

thing1 · 03-28-2004, 12:01 AM

I had heard of a diabetes and autism connection but not a pcos/syndrome x/autism connection. I was going to look up that info (the diabetes bit) for Paula on the web when I had a chance. Wow! Now I will search for a syndrome x link too, thanks Sugarbug!

Basically, my assumptions came about when I realized that the same vitamins that were being suggested for PCOS (B vitamins, magnesium, chromium, EFA's, and so on) were the EXACT same ones I was giving my son. So I started taking them (I used the ones from Kirkman labs, just like I give my son) too.

Paula,
Good luck with Dr. Kartzinel in Fla, I know about 3 moms who take their sons to him and they really like him. I meandered down the tmg path, but in the end I just was too afraid of the possible side effects. Also was supposed to do the whole MT protocol thing which is the latest rage but couldn't bear to put my little guy through that. I wholeheartedly agree with the doctor that there is a genetic vulnerability to certain environmental triggers. Quite possibly the reason no two aut kids are alike!
Also, you've (or your son has) got to try Kirkman's B6/Magnesium wafer. It's chewable and tolerable (meaning it does not make you sick!) It has the megadose of B6 that our kids need. I've started taking one and noticed a drop in the number of migraines i have per month!

Tas,
Have you had your son tested for Leaky gut syndrome? I have a friend with an aspie teen, who is adamant that it was the MMR. He is homeschooled also, due to some agressive behaviors, and she has had extensive medical/invasive testing of his, for lack of a better word, gut. The reason I ask is because someone posted about Leaky Gut Syndrome and PCOS, here on this board not too long ago. My memory is fuzzy on this but it's something about the measles virus in the vaccine that destroys the gut lining?!?

Suze,
excited but nervous about finding a connection, i don't need any more guilt...

Tas · 03-28-2004, 03:39 AM

I read that the problem with MMR is that it is 3 vaccines together. The mercury in other vaccines they have compromises the immune system, then along comes the 3 in 1 and it is all too much for their little systems to handle. If you feel you must vaccinate it is better to use single ones. My kids won't be getting any more at all.

We're not doing anything specific to lower mercury levels. There is chelation therapy, but AFAIK it is not available here. We're just using a wholefoods diet, keeping away from most additives and refined foods. It's also a case of picking your battles - depending on how bad the child's problems are, you need to way up whether it's really worth the stress. I found the more I tried to get my son to see doctors and counsellors, and eat this and not eat that, etc., the worse his behaviour was getting. Since I have been able to take a step back and ease off trying to 'fix' him, things have got better and better.

One list I was on had a golden rule - '(Like in an airplane) make sure you're own oxygen mask is firmly in place before trying to help your children'. Looking after your own health really helps you deal with the stress involved with these kids.

peagreen · 03-29-2004, 02:03 AM

Hi Ladies, (this is loooong...sorry)

I attended the last DAN conference in Portland, and heard a detailed description of how that Denmark study was flawed. I thought it was very compelling and I tend to be very sceptical, in general.

I think that the pharmaceutical companies got wind of these two studies (one coming out of Johns Hopkins, etc. and the other from Japan) which prove a link between the mercury found in vaccines (Thimerasol) and neurological problems. They apparently lobbied congress to sneak in a last minute item into the Patriot Act that provides protection from law suits related to Thimerasol. Very interesting...

With regard to the MMR, it's not just the thimerasol that is at issue, it's the measles portion of the trio itself. Researchers in the UK performed a study that found measles particles (the vaccine strain) in the gut walls of autistics indicating a chronic infection. One of the researchers, Dr. Wakefield, went public with these findings causing a big stir in England and many parents stopped getting the vaccine for their kids. Dr. Wakefield lost his funding and is now practicing in the U.S. Under pressure from the British governement, several of the other researchers who had originally supported these findings about the measles vaccine, made statements indicating that they didn't feel that they had really had enough data to support their previous statements. I guess they were afraid that they too would lose their funding.

My son was diagnosed with PDD (NOS) at 13 months. Since we were conerned about possible autism at his 12 month appointment, we declined the MMR and I'm so thankful for that. Since then he has been on the gluten free/cassein free diet and now is on the Specific Carb Diet in hopes of getting the yeast/leaky gut under control. He takes a long laundry list of supplements, gets ST,OT, and Floortime therapies.

What's made the biggest difference for him is the anti-fungal treatment. Yeast overgrowth seems to be a big piece of the puzzle in his case. When the yeast is under control, we have a basically normal toddler. When we have yeast overgrowth or die-off, we have an ASD child. The question is what messed up his immune system so much that it can't keep intestinal flora in balance.

I don't know if my son got mercury because he was born after thimerasol was removed (though, as I understand it, drug companies, doctors/hospitals are still allowed to use up the existing supplies so even today, kids are still getting mercury-containing vaccines.) We are currently doing an FDA investigation to check the lot numbers of his vaccines to find out for sure.

I now understand that it's not just mercury that can cause issues for these kids, but also other metals, like aluminum which is also found in vaccines. Plus, if a child is born with a disfunctional detoxification pathway, then they can accumulate metals from the enviroment (metals are all around us all the time). This is where the genetic link becomes a question. Why are certain kids genetically predisposed in this manner? Is there a link with PCOS somehow? We know that, for example, kids on the autistic spetrum have a messed up copper/zinc ratio as do women with PCOS and, as Thing1 mentioned, the same supplements seem to help both. I'd like to look into this more.

My son is now 22 months old and much of the time is indistinguishable from his peers (except that he has more language, is smarter, and is much cuter...a mothers right to brag). We still have some issues to deal with but I am very optimistic. I really feel we are on the brink of a more meaningful understanding of what's causing this epidemic of autism and how it can be prevented and possibly treated.

Paula

peagreen · 03-29-2004, 02:28 AM

SugarBug,

There are a few ways currently used to reduced mercury levels. Perhaps the most popular is DMSA which is a chelator, meaning it binds with the metals and pulls them out. We decided not to use DMSA because, among other safety reasons, it causes the yeast to come raging back. Plus, it's just not a good idea to stir up metals in the brain. What's nice about DMSA is that you can do a challenge with DMSA and then measure what comes out in the urine so you know what kind of toxicity is involved and there really isn't a reliable test for mercury levels since mercury gets bound up in the tissues.

In the next couple months, we will begin TTFD (can't remember what this stands for) but it's in the form of a transdermal cream. It works more gradually by activating the body's own detoxification system.

The latest treatment looks at the methylation pathway...the biochemical pathway by which detoxification takes place. Since mercury can disrupt this process, the idea is that you can repair the disruption in the process with specific supplements (methionine, TMG, and B-12). Anyway, this is the latest big thing in the world of DAN but time will tell. There was high hope for many past therapies that didn't pan out in the end.

Paula

walnut · 03-30-2004, 03:39 PM

Cilantro is known as the 'poor man's chelator'. We used it to pull lead out of our son. It worked. Anyways, just wanted to throw the idea out there, in case anyone wanted to explore it further. It's supposed to work on other heavy metals as well, and it's a good garnish to eat along with fish (another source of heavy metals).

thing1 · 03-31-2004, 01:01 PM

Wow! Cilantro as a chelator? That's amazing. I've been so out of touch with the vaccine/diet side of autism, we've really working on behavior mod for a long time. Interesting to see new ideas surfacing!

Tas · 03-31-2004, 06:57 PM

Chlorella is also supposed to be good for detoxing heavy metals. I haven't tried it yet - bit worried about the taste.

Powerful Detoxification Aid for Heavy Metals and Other Pesticides

Numerous research projects in the USA and Europe indicate that chlorella can also aid the body in the breakdown of persistent hydrocarbon and metallic toxins such as DDT, PCB, mercury, cadmium and lead, while strengthening the immune system response. In Japan, interest in chlorella has focused largely on its detoxifying properties -- its ability to neutralize or remove poisonous substances from the body.

This detoxification of heavy metals and other chemical toxins in the blood will take 3-6 months to build up enough to begin this process depending on the dosage of chlorella a person is taking. It is also this fibrous material that greatly augments healthy digestion and overall digestive track health.

How Does Chlorella Detoxify Your Body?

Chlorella is comprised of a fibrous, indigestible outer shell (20%) and its inner nutrients (80%). It is the fibrous material that has been proven to actually bind with heavy metals and pesticides like PCBs, that can accumulate in our bodies.

A clean bloodstream, with an abundance of red blood cells to carry oxygen, is necessary to a strong natural defense system. Chlorella's cleansing action on the bowel and other elimination channels, as well as its protection of the liver, helps keep the blood clean. Clean blood assures that metabolic wastes are efficiently carried away from the tissues.

http://www.google.com/custom?cof=AH%...om&q=chlorella

Tas · 03-31-2004, 07:15 PM

http://mercola.com/2004/mar/31/mercury_vaccines.htm