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Slightly increased sed rate and positive ANA, led to testing and finding positive RNP and anti-cardiolipin antibodies. Autoimmune Encephalitis ABSOLUTELY looks like severe PANDAS. OCD, delusions, movements, you name it. My daughter is getting treatment to suppress her immume system and is doing much better. Joybop, with that hashimoto's you must make sure your kids are getting checked thoroughly! Also having multiple kids affected. I have/had two severe kids and two not so severe ones. All are getting checked! We do have a strong history of autoimmune diseases on my (maternal) side.

My daughter was treated for "pandas" for years, only to recently be diagnosed with autoimmune encephalitis, with identifiable antibodies. I think a thorough workup is necessary. I will pm you more.

I would add autoimmune workup to llm's preferred labs. Sed rate ana dsDNA Ena Starts to set up a case for autoimmunity, if there is one.

Where do you live? Can your ped do sed rate, ana , etc? Do you think this is autoimmune? Can you go see Dr L or get pex? That was the best for acute severe episode for us. High dose steroids?

Please understand, I am not trying to be argumentative, I am truly wondering, where is there "proof" that the CDC did this? Why would the CDC do this & allow a test that they know is not complete? Please- no governmental conspiracy theories on this: just wanting proof or evidence.

I would get them out. I know of mulitple people (specificlaly one adult- a mom of a PANS kid who has moved on form the forum) who got them out- they had been on the fence about taking them out & when they were cultured post-op they had strep, and more organisms growing in the tonsils. I would think your son may definitely benefit from getting both t & a out.

How about the article on the IOCDF website about PANS/PANDAS? It is for parents and practitioners. It was written by Susan Dailey and Dr Jenike, I think.

Is HE not accepted by some docs as a cause for psych symptoms? I did not realize that! I feel so naive

Joybop... has your daughter been thoroughly tested for this?

You may have your answer , T.Anna!!!! Yes there is a forum friend with some experience. ... I cannot remember her forum name (now she is a REAL friend , so i cannot remeber her forum name;) P.m. you

It is a sub Q infusion, so you can do decent amounts. It is done in abdomen typically. Our immuno thought that this couldlo be a good option someday. My daughter is being treated for autoimmune encephalitis (successfully) with 1 g/kg a month for the next few months. Perhaps, she m ay get a sub-Q infusion sometime in the future. The dosing may be different for sub q.

We saw a similar healing with our 14 yo. Pex, 4 months later ivig, then about one year to 18 months later, there is no sign she was ever affected. She is clearly done with puberty, so maybe the timing coincided? I wish I remembered for sure.

What are your childs symptoms? Duke does not treat PANDAS per se, but if your child is severe or has autoimmune encephalitis maybe they can help. If it is certainly PANDAS, Dr L in MD woud be a good bet and about 5 hours to drive, maybe?

the drainage pipe from our dishwasher once was COMPLETELY clogged from powdered soap buildup. My husband actually had to cut the seemingly- cement filled pipe (it was all undissolved powder) to remove it and replace it. Not to mention all that soap buildup inside. nice place for all kinds of unhealthy junk to buildup. We dumped that dishwasher and now only use liquid detergent. It was shocking. I think dishwasher, especially if it does not have a really hot water flow/cycle can be a fabulous place for bacteria/viruses to flourish. I have heard the kitchens are dirtier than toilets.

sounbds like PANDAS to me. have you tried using advil regularily for a few days. I would do that for sure. So if Dr K thinks it is PANDAS, what did he suggest? I imagine he would not jump into another IVIG at this point, but maybe steroids? PANDAS can certainly look bipolar. and psychotic. and defiant. and like a parent who does not "control" their kid. and it can just look like a little eye twich sometimes. No wonder we are all exhausted from chasing and trying to squash it all the time.

Dont know anything about Lyme and pregnancy.-but CONGRATULATIONS! !

I believe Zoloft takes time to buildup, doesn't it? If it has only been 2 weeks since the increase, then perhaps the 25 mg is just now starting to wreak havoc. Why did you increase it? I would definitely go back to 12.5 and stay there for a while to see if it returns to the decent baseline he was at before. Psych medications are a bit intimidating in their ability to cause so much effect on the brain, positive and negative.

Pm you.

My friend's son had this.after much testing and specialists, the doctors finally decided that it was from sports! it happened several times and the doctors said it was just tiny blood vessels breaking from the athletic activity. He was about 8 at the time.

What does an awareness day do? (excuse the terrible grammar-I am not sure how else to word that!)

any body! You will need to figure out the dosing, though. My 5 year old took 5ml twice a day. try it. Strawberry Banana flavor.

We were instructed to use MyKidz10 iron only formulation to supplement our five year old. Decent taste and non staining .

Sleep doc wanted ferritin close to 100 for rls symptoms, also.

Does your son has IBD or Crohn's disease?

PM'd you!