Trying to understand a few thing

[colleendonny]

OK, so I have been reading many posts on here and I am still confused on a few things. I try to research but there is so much information that I feel overwhelmed. So, I'm wondering if people can help explain a few things in laymen's terms

 

I'm having trouble understanding these things:

Methylation?

MTHFR?

 

And I do notice dilated pupils every so often in my questionable PITAND daughter. But now I also notice them in my 2 1/ year old son. Do dilated pupils only show during symptoms? Is there any other causes for dilated pupils? PS, my son is a "typical" 2 year old, from what I thought, but after researching PANDAS and such, I'm finding things to worry about. He is also sensitive to light. Could it be early stages? Can a PANDAS kid have dilated pupils not during a flare up?

 

And as far as vaccinating. I plan on not doing so for a while with my DD. Should I plan on not doing so for my other children, age 2 and 6 months, in terms of my DD having a reaction from them. Because i read up of a lot of PANDAS kids who have a sibling with it, it makes me scared that one of them could have a reaction....

 

And if you don't vaccinate, how do you get them into school if they are able to do so?

 

Thanks for the help

We go back to see Dr. B next week so I want to make sure I go there knowing what I'm talking about.

[LNN]

I will try my best to answer some of these questions, but some of the topics are pretty complex, so not sure I'll do it justice.

 

First, the easy one - MTHFR is the name of a gene that everyone has. It's job is to convert folate (vitamin B9) into methylfolate - a form that can be methylated (converted) by the body and set in motion chain reaction processes that make the body work properly.

 

People have genetic mutations to any number of genes. But in looking at kids on the autism spectrum, a few doctors theorize that there are perhaps two dozen genes that are more likely to have mutations in these kids. Mutations that might "block" important chain reactions (which is broadly known as the methylation cycle) and lead to the neurological symptoms seen in ASD kids. One of these doctors is Amy Yasko, so she's been discussed a fair amount on the forum lately. One of the genes she looks at is the MTHFR gene. Of Yasko's 20+ genes she tests, the MTHFR resonate with some of us because MTHFR can indirectly effect the amount of seratonin you have available and seratonin deficits are implicated in OCD. (plus, to be honest, I like the idea of blaming my kids' problems on something with the acronym MTHFR ).

 

It's an easy gene to test and can be done by any commercial lab and is covered by insurance. So if you're looking for methylation problems, it's an easy place to start.

 

Now to skate out onto thinner ice...methylation as a topic...

There are lots of imperfect analogies to try to describe methylation. It's a chemical process where methyl groups are traded. I think of it as hundreds of cogs in a clock mechanism. On the first cog, there are teeth that spin, maybe to the 3:00 position, where they touch the teeth of the neighboring cog. At that touch point, Cog A gives up a methyl group to Cog B. Cog B lights up and does something, setting Cog C in motion. Cog B continues to rotate and when the teeth touch Cog D, Cog D lights up and does something else.

So imagine the trouble a body would have if there's a block in Cog B - you get not one but two problems down stream - neither Cog C or Cog D light up.

 

Here's a 1999 article from newsweek that talks about SAMe - a supplement that works like an SSRI http://biopsychiatry.com/sameart.html.

SAMe (known formally as S-adenosylmethionine) is not an herb or a hormone. It's a molecule that all living cells, including our own, produce constantly. To appreciate its importance, you need to understand a process called methylation (chart). It's a simple transaction in which one molecule donates a four-atom appendage—a so-called methyl group—to a neighboring molecule. Both the donor and the recipient change shape in the process, and the transformations can have far-reaching effects. Methylation occurs a billion times a second throughout the body, affecting everything from fetal development to brain function. It regulates the expression of genes. It preserves the fatty membranes that insulate our cells. And it helps regulate the action of various hormones and neurotransmitters, including serotonin, melatonin, dopamine and adrenaline. As biochemist Craig Cooney observes in his new book, "Methyl Magic," "Without methylation there could be no life as we know it."

 

And without SAMe, there could be no methylation as we know it. Though various molecules can pass methyl groups to their neighbors, SAMe is the most active of all methyl donors. Our bodies make SAMe from methionine, an amino acid found in protein-rich foods, then continually recycle it. Once a SAMe molecule loses its methyl group, it breaks down to form homocysteine. Homocysteine is extremely toxic if it builds up within cells. But with the help of several B vitamins (B6, B12 and folic acid), our bodies convert homocysteine into glutathione, a valuable antioxidant, or "remethylate" it back into methionine.

 

SAMe and homocysteine are essentially two versions of the same molecule—one benign and one dangerous. When our cells are well stocked with B vitamins, the brisk pace of methylation keeps homocysteine levels low. But when we're low on those vitamins, homocysteine can build up quickly, stalling the production of SAMe and causing countless health problems. High homocysteine is a major risk factor for heart attack and stroke. During pregnancy, it raises the risk of spina bifida and other birth defects. And many studies have implicated it in depression.

 

In the second paragraph, you see folic acid mentioned. Folate is the body's natural form of folic acid. Your MTHFR gene converts folic acid into methyl-folate, which can then convert homocysteine (which can be toxic) into glutathione or recycle it back into methionine (which are both good). Well, if you have a mutation in your MTHFR gene, this process doesn't work right and you get clogged cogs.

 

Having a MTHFR mutation doesn't mean you'll develop Pandas or autism. I likely have this mutation and tho I'm far from "normal", I don't have Pandas or autism. But if you do have Pandas, then any block in methylation might complicate your problems. There are many many places for clogs to occur. Some kids, particularly those with chronic lyme or problems with mold, have a mutation in their HLA-DR gene (which you can also test for). My kids likely have a genetic mutation that makes their bodies pee out zinc before their immune systems can use it. A clog in your immune system can obviously cause a lot of problems for a Pandas/lyme kid. But Yasko and others have focused on the genes specifically associated with methylation because methylation is so critical to so many functions.

 

Yasko theorizes that if you find a genetic mutation involved with the methylation cycle, you can't "fix" the mutation, but you can build a detour around it. If you have one type of MTHFR mutation, when you take a mutli-vitamin, your body can't convert the folic acid in the vitamin. BUT you can take a pill of methyl-folate and give the body something that's already been converted. Your gene still doesn't work, but you've done the work ahead of time and your body still ends up getting the methyl-folate it needs for all the other cogs to work properly.

 

Here's a much more eloquent explanation...from yesterday's Wall Street Journal (same reporter who covered Pandas last month)

http://online.wsj.com/article/SB10001424052970204368104577136850522166664.html

 

As for your vaccine questions, this is one where you just have to educate yourself and make a personal decision. Knowing what I know now, I would still choose to vaccinate my kids against the really terrible stuff (polio) and the things required to get into elementary school. (my kids never had issues that I would blame on vaccines). BUT I would not give any combo vaccines (would insist on a separate measles, separate mumps, separate rubella instead of MMR). I would always make sure before the fact that no vaccine contained thimerosal (which is a nice name for mercury). Many flu shots still contain thimerosal. Don't assume it's not used anymore. I would make sure my kids were absolutely healthy and hadn't been sick for 2 weeks prior to a vaccination. I would never ever give my kid tylenol after a shot, which I was told to do many times (tylenol can interfere with the effectiveness of the vaccine itself and it can deplete glutahione, an essential to helping the body detox after a vaccine). I haven't made up my mind about the vaccines required for kids entering 7th grade but have a few years on that decision.

[coco]

Just my two cents regarding vaccines...if I were to do it again I would positively waif until my child was older and no multi-shot vials EVER! I would have my daughter receive the same ones I did---yes, going back to the dark ages of the 1960s. Currently I believe there is a total of 26 vaccines/boosters before the age of one. Each time the child's body is tricked into providing an immune response, which their still fragile and developing neuro and gut flora may or may not be able to handle. What pushes some of our kids over the edge? And our kids are left with serious repercussions no "shot" can fix. My girlfriend just had her third baby. Her ped said it was time for "rotovirus" otherwise if baby gets it & becomes dehydrated it could mean a trip to the ER. Her reply...I guess we'll be going!"

[dcmom]

I agree with coco-

 

If I had to do it all over again, I would evaluate each vaccine carefully. What are the chances of MY child getting the disease? What are the chances MY child would DIE from the disease? I would weigh this against getting a vaccination, which could be a major risk.

 

This would cut down a lot of vaccines. It may also change the AGE at which MY child should get the vaccination.

 

I would hope to find a smart open minded doc to be my partner in this.

 

My kids have had all their major vaccines (prior to pandas, and my eyes being opened). We will never do flu shots. We won't do HPV. We have held off on a tetanus booster and a meningitis vaccination for now.

[colleendonny]

Thanks for all the info LLM. It's going to take a lot of studying for me to "get it".

And thanks ladies.for your thoughts on the vaccinations. I will be very careful in what I choose to do from now on....

How do you get your children in school with skipping some of their vaccinations, or delaying?

[nicklemama]

I also concur w/ Coco. I would do it very differently if I could do it again. I would do similar to Coco... one vax at a time and only the one's I had as a child. My DS's PANDAS was triggered by FluMist. Currently, he is fully vaccinated(done before PANDAS) but he will not have another vax until he's an adult and can make his own decisions. States have their exemption guidelines about vax's. In my state, you can obtain a medical exemption or a religious/personal belief exemption. They are nothing more than forms to be filled out. One by your doctor and one by yourself.

[Mayzoo]

We were rather conservative with kiddos vaccines and she still has Chiari, syringiomylia, arachnoid cycst, autism and now PANDAS. I allowed the ones I received in the 70's and the chicken pox vaccine. She did not receive any of the hepatitis vacs, or Prevnar and only received one MMR. She did receive the HIB, DTAP, one MMR, and polio.

 

I am not promoting or renouncing the vaccines. Just letting the folks who are thinking what if we had been more conservative.....know what our personal relatively conservative approach resulted in.