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TinyTreasures

Can Vitamins really be helping my son this much!? Incredible.

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My son started with severe PANS symptoms at age 2.5. To make it very short, for about 3 years life was close to h***. He simply was not the same child anymore.
Antibiotics (Augmentin) was his miracle drug. We had to start it immediately with every illness - even a 1/2 a day of a cough and runny nose, and things still were sometimes unpredictable. For instance, every time he would get hungry it would like his PANS symptoms came back full blown, and once he would eat he would be back to himself.

About 3 months ago we even tried Zoloft with DIRE consequences. His symptoms were near their worst on Zoloft, and after a week I stopped even though his psychologist said to double it (yikes!). Never again.

That is when I became very consistent with his vitamins - I had given them to him before but not consistently. So every single night for the past 3 months he gets a Flinstone Vitamin, Fish Oil Capsule, Probiotic, Dr Rob Keller's OGF (Original Glutathione Formula), Methylfolate and sometimes Methylcobalamin (due to MTHFR gene mutation), Zinc (due to off the charts Copper shown in a hair test), and I started adding Vitamin D (he was shown deficient on all his blood tests) and later Vitamin B6.

The result was nothing short of incredible. Finally we saw "our son" for longer periods of time than ever, and he even went through 2 minor sicknesses without antibiotics for the first time in a year!!! His personality was back. He did not say a curse word in months (at his worst he said the F word literally thousands of times a day). The only thing still left were tics - not as bad as they had been in the past - but still not great. So two separate times I didn't give him his vitamins for 2-3 days to see if maybe I was giving him too much and it was causing his tics. Both times he regressed back into full PANS symptoms. Rages and irritibility, tantrums over everything, constant need to hurt us and others, OCD, obsessions with violent things, worse tics, major sensory issues, fears, etc. Both times he went back to himself within 2 days of restarting the Vitamins. Seems like way to much of a coincidence to be a coincidence!

I feel like I HAVE to post this because it is truly incredible how a seemingly simple issue like Vitamin deficiencies can completely change your child's entire personality. And hopefully this will help someone else - it was actually someone who replied to my last post asking if I was giving Vitamin D which caused me to start, and I think that Vitamin has helped incredibly.

So thank you and don't give up...your child is in there!!!

Also one last thing - about a month ago I tried adding liquid Magnesium with Calcium and within a week his tics were horrible and his personality/behavior as well. After stopping it he returned to how he was before. I read somewhere that liquid Magnesium feeds Spirochetes. My son has never been diagnosed with any official reason for his PANS, just elevated HHV-6 levels (he did have Roseola 3 weeks after PANS started), so this is something I will bring up to his Dr on his next appt.

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I think YES! Vitamins/supplements . . . in the cases in which our kids' systems are truly lacking . . . can have miraculous impacts! So glad you're seeing such great results! We're real believers in our DS's supplement regimen, too. In fact, to such as extent that he's been taking them fairly religiously (only a "skip" here or there) for the last four years. If it works, stick with it, I think!

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We're still trying to work out the vitamins and supplements thing. We just got 23andme results back a few weeks ago, and I've been reading everything I can and trying to learn where to start and what will work. My daughter is +/+ for both COMT so she can't have any methyl groups. Yasko suggests starting with GABA which I've been trying to get into her for days with no luck. She is afraid to take anything new right now. She is taking D3 and K as well as magnesium. I'm trying to find a multi vitamin without folic acid of any kind and a mineral without iron, copper or zinc as she doesn't need those.

 

Interestingly when she was taking a mineral with iron she went to the dentist for a routine cleaning, and the dentist asked if she was eating a lot of iron fortified foods as she had iron stains. She doesn't eat much processed foods, so I said no and then realized the mineral supp she was taking had iron in it. We stopped that, and I've noticed her teeth are whiter.

 

I'm so glad this is working for you. I'm hoping to find the magic formula for my daughter, too.

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TinyTreasures,

 

I noticed you added zinc and B6. Is there a chance your child has pyrolluria? B6 and zinc is the treatment for that, and I believe others on here have seen positive affects from treating for this.

 

So happy you are seeing positive results!

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I second your post. We had what we thought resudual pandas symptoms or a new flare with healing...so we decided to dig deeper for co morbid issues...

 

We found it! Vit b12 a multiple trace minerals vit, vit c, cal and mag and some lithium ortate. Wala! Saw my kid that i had not seen in 6 months within days.

 

Also BIG dairy intolerance played a big role.

 

He is currently 100%

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