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.
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.
I wanted to say thanks to the producers of this forum.
I remember when this disorder, just about turned my family upside down.
Thanks to the people in this group, and especially DR.T. We are symptom free for about 3 yrs and counting.
One thing i remember from back then, was i did not see many conclusion storys. I would like to offer one.
These are just my opinions , based on facts we went through. I do not have the time to get really detailed, so please pardon my shortcuts.
I had 2 children affected within 6 months.
It happened around the time of the H1N1 scare.... The time of a big vacination push in our local schools..... Remember that?
Our first case was with our youngest, he first displayed "complex vocal tics"
This is when i considered my self baptised by fire, and scoured the internet for truthful information. I found this forum and within a Link to Dr. K....( I will not use names of Dr.s)
He provided breif assistance, with a Short script of Augmentine.(Immediate temporary improvement 1 month of so) Too short in my opinion.
We discontinued with DR. K, after he discontinued with us.... I was not on board with I.V.I.G.....He Did not really responed to my emails or my lack of Insurance.
During the time of the initial course of ABX, I studied the comments on this web site.
I then solicited DR. T for his knowledge and help.....
Everthing is now in order thanks to DR. T.
I believe some cases can be Cured( yes i used the word cured) with a strong dose of the correct ABX.
How has our life changed?
No packaged foods
No GMO
We consider everything we put into out body.
I wish you all the best of the best, on your journey.
btw here is a link to a new person sharing vids on pandas.
