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mmw

A Post To Give You Hope

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So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives.

I have a (now 18 year old) who began with PANDAS/aspergers symptoms as a toddler. It got very bad- tics, ocd, hallucinations when he had strep, and absolutely zero social skills or awareness. 

What we did: turned out we had major mold in our house and did complete mold remediation. He was on Augmentin for years and that really cut back on the illness. He still struggled socially a lot, so the summer after 2nd grade we did Brain Balance. It was hard. It was not fun. But we did it hard core, taking away the left brain toys (tinu books, figures, legos, even books not related to school) and did the practice exercises an hour a day on non-center days. We tool him off gluten and dairy (I believe he is celiac but he can now do dairy). We gave a ton of vitamins and digestive enzymes because he was not growing and was predicted to be 5'1 as an adult.

Within a few months after Brain Balance we saw some social awareness. It came gradually but the improvements snowballed.

 

He is now a junior in high school who plays on the basketball team (He literally couldn't catch a beachball in second grade), was nominated for the homecoming court this year, has strong friendships, and is very happy, planning to study architecture in college. He is sweet and happy and doesn't remember most of the stuff when he was younger. He is very outgoing and makes friends easily.

When his totally normal sister finished fifth grade we went to Disney and I noticed her having tics. I couldn't believe it. Yep, when we got home it turned out she had a raging strep infection with only tics and separation anxiety to show for it. ABX worked for a while, but she became withdrawn and started spending all of her time in her bed. In desperation, we flew to Dr T. Her numbers were borderline low, NO ASO numbers, and he told me she would never qualify for IVIG. Ironically the son I started off talking about had severe CVID. On paper he looked terrible and Dr T. wanted to do IVIG on HIM. Nope. We saw another Dr, Dr Jill Dickerson, in Georgia. She got my daughter covered for monthly IVIG mostly based on the fact that she had a strep infection that even four simultaneous (including IV) abx couldn't touch. (The herb cryptolepis got rid of it and she still takes a maintenance dose). So she has had 1.5 g/kg IVIG for a little over two years and we are weaning her off because she is healed. My now 15 year old is completely normal and is symptom free. (It took about 6-7 months of IVIG before tics were gone).

 

Sorry for the lengthy post but I want to give someone the hope I was so desperate for. Your child can and will get better. Don't give up. And Brain Balance was a miracle for us (an expensive one) but I truly think it worked because we did it to the nth degree.

 

Have Hope!!

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@mmw  I am intrigued by the cryptolepis. My DS14 has been getting monthly IVIG (1 g/kg) for almost 1 1/2 years. His MD doesn’t generally use prophylactic abx.  DS takes herbal antiviral, antibacterial and anti parasitic remedies.  His PANS was severe.  His tics are gone and OCD about 80% gone.  Still has sound and odor sensitivity, focus issues and issues with executive functioning.  Do you think the cryptolepis will help with these issues?

I’m so happy hearing how well your kids are doing.  Thanks for posting.  

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23 hours ago, maryangela said:

@mmw  I am intrigued by the cryptolepis. My DS14 has been getting monthly IVIG (1 g/kg) for almost 1 1/2 years. His MD doesn’t generally use prophylactic abx.  DS takes herbal antiviral, antibacterial and anti parasitic remedies.  His PANS was severe.  His tics are gone and OCD about 80% gone.  Still has sound and odor sensitivity, focus issues and issues with executive functioning.  Do you think the cryptolepis will help with these issues?

I’m so happy hearing how well your kids are doing.  Thanks for posting.  

You are welcome! My daughter is actually on three abx, but what stopped the positive strep and tics was the cryptolepis. Her doctor is slowly weaning her off the abx. I would imagine the cryptolepis would help is he has any lingering strep issue. I am not sure what else it targets. It certainly wouldn't hurt to try. Yhe tincture is on amazon or Woodland Essence. It tastes terrible so we put it in large veggie caps and my daughter swallows them. Be quick about it, because the cryptolepis will melt the capsule in about 45 seconds or so. There is no making it ahead. I hope that helps!

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