Cleopatra

Yes, minimaxwell's dd is a patient of Dr. Geller's and they adore him. I know someone who saw Dr. Williams last week. He did not push psych meds.

Hi that's my dd. She got way worse as a result of LD ivig. It gave her very bad compulsions where there were none before. And I do mean gave. LD activated her immune system in a bad way whereas HD overwhelmed her own antibodies and washed them out, overcame them in a good way. **some extreme problems began within hours of LD ivig. They remain after 6 months but hd is decreasing them.

My dd is acute onset strep PANDAS with zero co infections. She has had 6 HD IVIg's (plus 3 intervening LD ivig's). She has done amazingly well on it and it is the only treatment that has helped. Abx are useless here except as a prophy against additional strep infection. This has been over a period of a year. Her 1st HD ivig produced STELLAR results. Dd had been psych hospital worthy at the time. Since then, her improvements have not been as epic because each time she has less distance to go to get to 100%. Each treatment now produces slower and more subtle results. We are now doing it monthly. I can't say enough good things about it. I think it's worth every penny if you need to pay OOP and can lay your hands on that type of $$. That being said, every child responds differently to everything, but, if you have tried multiple abx, antivirals and cleared all current infections and still have more symptoms than are tolerable, it's certainly worth a try, IMO. It does stick. It does work. In order to help increase your possibility of it sticking I do recommend staying on HD abx during and after. It's not hype.

Where are you located? I am in S. FL and my pedi was refusing to swab my ds strep carrier due to no symptoms until she spoke with Dr. Murphy after my dd PANDAS got her dx.

My dd8 has been on Clonazepam for over a tear with TREMENDOUS success and no ill effects. She has SEVERE anxiety.

Which NIH study is this? Thx!

I am planning on attending.

Go to the NIH IVIg study page. It lists 2g/kg as the dose used in the protocol. You can also email them directly (Dr. Swedo and Dr. Grant) for dosing and protocol info. used in the study.

My dd was addicted to the PC and would get violent if you tried to get her off. That was one of many extreme symptoms. She has been cured of that and most other things since getting IVIg treatment.

We live in South Florida Palm Beach/Broward County area and need to find a PANDAS MD. We have been to see Dr. Murphy in St. Petersburg (primarily for a research appt. and partially for a clinic appt. which gets us an audience via email and phone with Dr. Murphy at this point), but, that is 4.5 hours away and I am wondering if anyone here knows of someone with experience who is closer to me? We have also been to NIMH (did not get accepted to the IVIg study, but, also gets us an audience via email and phone for questions with Dr. Grant) and are currently awaiting scheduling for our first IVIg treatment. The problem is that I know more about PANDAS than our pediatrician who is the "captain" of our ship. I can email these experts and our pedi can call these experts for counsel, but, I am the one explaining things, diagnosing and pushing for treatments. My pedi is FINALLY on board and doing what I ask, but, it is extremely nerve-wracking for me to be in charge of this hot mess. I am not an MD (although, some days I feel like one!). Any names out there???? Thank you in advance!

Thanks. I finally got word back from Rothman today that my DD does not have active Lyme or Mycoplasma, but, that she was exposed previously. I wonder how much having those in her system worked with the strep to start the onset of the PANDAS? Hmmmmm..... ?? In any case, at least now I know that her cough is tic/Tourette's and PANDAS based and should be resolved by IVIg if we get the treatment. Thank you again. I am hanging on by my fingernails waiting to go to Bethesda and praying we get some treatment. Until we do, my DD is not allowed to take anything and she is in pretty bad shape. One of her OCD's is being obsessed with not sleeping so we are up ALL night in my house and I am still trying to work and raise 7 year old twins alone. I could deal with the rest of it if only I could get some sleep. Zzzzzzzzzz..... Some nights she stays up until 6:30 or 7:30 a.m. Fingers crossed for study acceptance and IVIG. Thank you.

My DD was recently dx'd with PANDAS post strep infection (3 months ago) and was just tested at Rothman as HIGH for both Lyme and Mycoplasma as well, so, ours is definitely pre-IVIG txtmnt as we have not had any yet. We are on way (Sunday) to NIMH for the IVIG study. I will keep you posted.

My DD (7 years old) was recently diagnosed at Rothman (2 weeks ago) with PANDAS stemming from strep in September 2012. Went to Rothman 2 weeks ago and finally managed to pry her lab results out of them. I was given almost no information about her evaluation as Dr. Murphy is aware that my DD has been accepted for evaluation at NIMH for their IVIG study beginning on Sunday. I just finished poring over her lab results and they indicate LYME and MYCOPLASMA values as HIGH. My DD is currently taking Azythromycin 625 ml 1x/day for 14 days due to HIGH strep titers. Dr. Murphy sent her results to NIMH and they accepted us on the basis of my information, medical records and her evaluation. My question is this: It seems ridiculous that my DD not only had strep resulting in PANDAS 2 weeks later, but, that she also has Lyme AND Mycoplasma Pneumonia! All three are known to cause PANDAS. What are the odds? AND... if my DD does have Walking Pneumonia... couldn't that be the reason for her constant cough, rather than it being a tic/Tourette's based in PANDAS and should be treated as such???? and BEFORE we do the NIMH study? My DD also has all of the symptoms for PANDAS to varying degree except for bed-wetting. Otherwise, she has everything else including heavy family history of auto-immune diseases. Should I be concerned about sorting this out, or, go forward and see if we are accepted into the study on Monday and do the IVIG/Placebo if offered?