LaurenK

Yes that is what I use. Could be some sort of die off?

Culturelle also caused a big problem for me. I do better with blends of probiotics. Strep thermophilus has never caused me any issues. Culturelle activates the same pro inflammatory path way as group A, strep pyogenes.

Didn't he talk to you about all your other options though? Is Dr. J more your primary care doc?

Lets hope it gets better after the phase III clinical trial?

If his quality of life is impacted, there are other options. Im sure he's talked to you about them? No?

Melanie, why not see the neurologist in NY and do the high dose IV steroids.

Is it possible to have bartonella and Lyme & no neurocomplications at all?

A lot of these problems that these kids have- they have been solved with IVIG, PEX, IV Steroids... If none of that worked, then you move on to more experimental things like the hookworm, looking at gut flora, fecal bacteriotherapy, RTMS- if necessary DBS. My personal opinion is that it's never too late, AND CERTAINLY all of these options should be looked before sending someone away. =( Guess I feel quite strongly about this topic as I have PANDAS and can't imagine how horrible I'd feel if I was sent away as a kid. ESPECIALLY when a couple days of IV steroids brought me completely back. I do hope you find a way out of this. I am sorry for what you are going through. Make sure you look at all of your options carefully! Sometimes things can be so overwhelming that you don't see clearly!

When you say a residential program- is that like a long term stay place for mentally ill kids/adults? I am at a loss to why these options are even being discussed. These kids can get well!

I think often times it depends on the doctor LLM. I agree with you that some just hand out a diagnosis like its nothing at all, but some do know and understand both diseases. Plus it is possible to have both.

I think a lot really depends on the age in which it happens. It's a whole different can of worms when it happens in infancy because crucial areas of the brain are still developing. If specific regions don't correctly because of PANDAS, then perhaps the child will be left with more problems. Parts of what you say do sound like PANDAS, but if you saw a good specialist and he/she said no- it's Autism, then maybe it is that instead. Both PANDAS and ASD can have overlapping symptoms and brain circuits so it can be hard to tell & certainly nobody here can tell you one way or another. But for me, PANDAS was an abrupt onset of OCD and tics following a strep infection- No developmental delays. EVERYTHING disappeared with immunosuppressive treatment. I had no lasting delays or neurological problems. The success with the antibiotics doesn't say much other than that perhaps inflammation is involved.... it doesn't necessarily prove an autoimmune problem because abx are immunomodulatory.

Iowadawn, have you tried IVIG, steroids or PEX yet? What do you mean a residential program?

That would be great. Beeskneeesmama? why 18 months?

I thought that stimming was more associated with ASD than PANDAS specifically? Yeast only worsens original PANDAS symptoms for me.

Anyone know? If this phase 3 clinical trial works, would insurance companies be obligated to pay for it?

I wouldn't let him get behind in school. I'd send him back and just use antibiotics 2 or 3 times a week to protect against any further problems.

Anyone have this too? Also sharing, I use this to get IVIG covered for this for the past 15 years, no issues. Never once experienced denial with insurance.

I was told not to vaccinate with PANDAS. No exceptions. Simply deal with the risk

Wondering if maybe I am being treated too aggressively? If I should be looking at other things? How many have a severe case of PANDAS but have not pursued IVIG and other immunosuppressants? & why?

I also have little recollection of flares and remember things very well about my own life.

quest is covered by insurance.

please please comment on this is you know anything!!

After treatment, a week or two later does anyones child experience their brain feeling "slow." I can't really describe the feeling other than talking like " I..... just..... want.....to.....talk.....like.....this" With lots of spaces between words and very slowly. Any help would be appreciated.

In my experience, IVIG induces remission. It does not cure.

does he go to CBT? That could help with the residual stuff, but he needs to realize that he's having a problem and he needs to take the step and say that he needs to go. (not you pushing him) or it might not be as effective.