LaurenK

Can you tell me what brand you use? Thanks

Anyone have any experience with this? Any indications whether or not it might work before purchasing it? Should I have homocystine measured? Thanks

Yes, very saw tooth. At about 3 months is where I get to a consistent 90%.. one month consistent 80%.. before that very up and down. That's with IV steroids. With abx, i'm immediately better within two or 3 days. Doxy and zith are the best combo. no up and down with that.

That's rough PTC girl. I find that I just don't get caught up in that anymore. You don't need every childrens hospital and every doctor to believe. You just need 1. Plus, just because they don't believe now doesn't mean that they won't believe forever. Hope your brother comes around.

Never, they have always helped me considerably.

My PANS symptoms always increased from days 11-16 and then 27 & 28. For a while, I took prometrium starting on day 10 and that helped CONSIDERABLY. But there were side effects, so I did end up stopping.

Its all how you phrase things. If you ask: Would you treat immune mediated encephalitis, they'll say yes. If you say, PANDAS, they'll say no. If you say, my son has a case of immune mediated encephalitis that has responded in the past to steroids and IVIG- can you perscribe these treatments, they might be more wiling to help. Try not to get so caught up on the word PANDAS. After all, the name is constantly changing. Focus on the core issue- autoimmune encephalitis.

I don't think that you should be overly worried, but aspergers and PANDAS can co-exist. As a matter of fact, I think the two co existing is quite common. Does your son have an aspergers diagnosis?

fish oil absolutely makes my tics worse!

Hi, I'm writing a book and dedicating it to children with PANDAS. It's about a little mouse who gets strep throat-... and well you know the rest. But it's in a comical and upbeat way.. Wondering if anyone here can draw/if anyone would like to work with me on it?

5-6 months. Tics & OCD

I dont think so. I am an adult and I get treat with IV steroids for PANDAS. I jut got treated a week ago and now I am in remission again.

Anyone know of any doctors there? I know a family who needs some help..

Ughh! Hate hopkins!

I'm so sorry to hear that. What do you mean he has not been functional in years? I hope that Dr. L can help you.

Anyone here ever use a low dose of chemo to stay in remission?

We live near Philly...about 4 1/2 hours away. He already sees one here, but can't be having to come home from school to get tx when needed. I know that Geisenger is a good hospital. Not sure how close that is, but I know its in central PA near snider county.

Do you live far from PA?

There's a lot more science towards using helminths as a treatment, I thought.

thanks so much for clarifing

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But cognitive damage? Isn't that when you just sort of act "slower?" Maybe im misunderstanding?

Anyone??!!! Is this new, the cognitive piece???

Swedo said that there is the possibility of permanent brain damage from PANDAS?

This was caused by strep for me. It went away with aggressive steroid treatment.