What can you do at home?

[Plum99]

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Edited November 17, 2016 by Plum99

[sf_mom]

Oops, accidentally posted under wrong topic.

Edited July 20, 2016 by sf_mom

[LNN]

In addition to Pandas/Pans, which in my kids causes an extreme change in the levels of their anxiety, moods, behaviors...both kids have been helped on a daily (as in all the days they aren't suffering from a Pans flare or illness) from addressing methylation problems.

 

Methylation is the chemical process your body's cells go thru a million times per minute, where the body takes nutrients and converts them into chemicals the body needs. Each chemical change is regulated by certain genes, and if those genes don't work correctly (i.e. if they have a mutation), then the chemical changes don't happen as effectively as they should. All of us have genetic mutations. But some people have mutations that impact mental health and if you know what those mutations are, you can sometimes use supplements or changes in diet as a therapeutic "crutch" or aid to work around the "disability".

 

For example, a lot of Pans kids have issues with a gene called COMT - which is one of the genes that controls how quickly the body uses up (degrades) adrenaline. If your mutation makes this process happen slower than "normal" then your body stays flooded with adrenaline longer than the people around you, resulting in anxiety or anger issues. This is called the "warrior/worrier" gene. Because you get one gene from each parent, you can have one or two abnormalities - which impacts the severity of the effects. So if you are COMT -/- you received a "normal" COMT gene from each parent. If you are COMT +/+ you received a "mutated" gene from each parent and you might eventually struggle with anxiety disorders or defiance/anger issues - or both. One of the things that helps the COMT gene work is niacin (vitamin B3). When you have a COMT deficiency, taking extra niacin can help your handicapped COMT gene work a little better and you'll get rid of excess adrenaline a little quicker, helping your mood return to stable sooner.

 

Another gene that impacts mental health is MTHFR - which affects serotonin and dopamine levels. Vitamins B9 (folate) and B12 (and to some extent Vitamin B2/riboflavin) impact how well this gene works. There are about 30 genes that impact this cycle - loosely called the methylation cycle tho it's technically 4 cycles (Krebs/BH4/folate/methionine). Knowing the status of each of these genes allows you to tweak what goes into the body so you can work around roadblocks. (tho having a mutation doesn't mean that mutation is active or "expressing" - but that's for another day).

 

It's a complex process. But the first step is to do the testing. Most people use 23andMe.com to do a $199 spit test. I think ancestry.com offers something similar and you can get genetic testing thru other companies and commercial labs like Quest - but for more money. I'm not sure if 23andMe has released a kit for children who can't yet spit - at one point they were working on a swab kit where you could swab the inside of the cheek to get a saliva sample. But not sure if it's available yet. The pioneer in this field is Amy Yasko and her company - holistic health - may have something for babies - her tests are in the $500 range I think.

 

If it's something that resonates, let me know and I can post some links to give you some background.

[MomWithOCDSon]

I agree with LLM that methylation testing could help set aside a lot of the trial and error and help you zero in on supplements and therapies that are most appropriate for your kids, as opposed to the "throw the spaghetti at the wall approach" that many of us initially used with our kids, due to ignorance as much as anything else. Some of us "got lucky" and happened across some helpful interventions.

 

While you're looking into and/or getting testing underway, however, I think many of us here would generally advocate anti-inflammatory strategies, from diet to supplements. Diet-wise, that generally translates to decreasing carbs/wheat/gluten and dairy, along with artificial ingredients to the extent possible. Anti-inflammatory supplements and/or foods such as pineapple (quercitin), curcumin (cumin), turmeric and certain Omega's (coconut oil, evening primrose oil, fish oil -- though some kids don't respond well to fish oil for some reason) can help.

 

Ultimately, the list of supplements and vitamins is quite long, but not every kid/situation responds well to what another responds well to (perhaps due to the methylation issues LLM has referenced?), so, unfortunately, I don't think you can take anyone else's shopping list, necessarily, and abide by it for maximum results.

 

There is another, very basic resource that we found very helpful in deciding which vitamins/supplements might be most beneficial for our DS and, fortunately, in our case, it proved to be quite accurate:

 

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

 

From this matrix, it was pretty clear that our DS was under-methylated/high histamine, and potentially pylouric, as well, and so we proceeded with zinc and B6, along with anti-histamines (quercitin, as well as OTC anti-histamines on occasion).

 

All the best to you!

[Plum99]

Thank you so much. This gave me a lot to look into and think about, and I am currently trying to teach my daughter how to spit.

[mama2alex]

A trial of a gluten-free, dairy-free, soy-free diet for both kids would probably be well worth it. Give it 6 weeks before re-exposing them to foods one at a time to see if they react.