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I couldn't agree more with Coco and her suggestion on having Diana P co-speak, considering that she has helped so many on this forum and supplied so much informative and useful information from her experience as well as a connection to the doctors who are familiar with Pandas. The website "Pandasnetwork" has been very helpful to so many.

Madhu, Your Immunologist (Dr. R) can have these test ordered for you. I asked him to give us a rx for ALL of these test, and he did. Linda

We could easily give him 50 patients for a controled study!

Dedee, I was trying to recall your older postings, did your son have IVIG? I can't remember. It's wonderful to hear that your son is doing so well and hopefully recovering from this. Linda

"We are a nonprofit organization and are not allowed to permit anything that can be perceived as self-promotion. This goes for authors, people selling nutrients or products, healthcare professionals--whoever." In another post you ask that parents post their Pandas stories and that they would be published in an ACN Publication. I'm curious, where would the profits from the subscription go to? Linda

Scotch/Irish/German/English/Spanish/and 1/16 American Indian Linda

Melanie, My son was also on clindimycin for 10 days and we too saw the increase in the tics. For us, I think it was yeast and it didn't seem to help. I asked the dr. for Nystatin and within the first day of dosing and no more clindimycin, I saw a decrease in the tics, not gone, but a good decrease. Linda

Lynn, There is a Marriott about 1 mile away from her office: 6711 Democracy Boulevard, Bethesda - (301) 897-5600 Linda

here is some more info on this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1853370/

Faith, IVIG and PEX has worked for some of the kids, and others like my son may need more of one or both, possibly because of the low IGG, not sure. We did see good results after IVIG, and even better results and for a longer period of time with PEX, but our ENT doctor believes my son may be a strep carrier and the strep is in the sinus cavities, not as easy as removing the tonsils and adnoids if the strep is carried there. As I understand it, and I could be wrong, is that doing PEX would remove all the bad antibodies and then follwed up with IVIG, would give the body a better fighting chance of mounting a resistance against the bad antibodies with the IVIG infussion of good antibodies. Linda

Alex, Glad to hear that all went well. As you know, we will probably be doing the same thing as you,however, the Immunologist here, thougth we should do Plasmapheresis again followed by the IVIG. Not sure which route we will be taking yet. Just FYI, Dr. K told us to make sure and keep hydrated before during and after the IVIG, to help with the headaches, and at the first sign of a headache to give tylenol or motrin. I hope this continues to help. Linda

Sorry, I cleared the box up. Linda

Is there is study out there that shows using two different types of antibiotics may work better than using just one? I noticed a few parents posts stating that Dr. T has rx'd 2 different antibiotics. Buster, do you have any insight on this? Anyone else? Linda

Melanie, If you don't mind me asking, where in Texas are you? I may have names of a few doctors for you. Linda

Pandas Foundatio, Inc. shows Deborah Curran as President and as a Officer, Paula Cardarelli as Treasurer and Clerk. Beth Maloney doesn't appear to be on the Board, she is just the "spokesperson". Linda

I believe there will be such a meeting of doctors to come in March some time. Not sure that it includes Dr. B though and or Nicolaides, but will include Leckman. All this info thru Diana P. Linda

I spoke with another Pandas mom from Arizona and she gave me the name of Dr. Robrt Hellmers who is treating her Pandas child. He has offices in Chandler, Mesa and Phoenix. 480-897-6992-Chandler, 480-346-4680-Mesa and Phoenix-602-266-4114. There s also Dr. Dines Talwar out of the University Medical Center in Tucson, he i a neurologist treating Pandas patients. Linda

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best? Where do you live? Are you in DC or anywhere close to NY or NJ? Linda

Eileen, I'll take a red wine! Linda

This little girl was on the Today Show yesterday, and then again the Today Show had Dr. Nancy on this morning mentioned a possible link to strep/tics, even mentioned Pandas, Dr. Nicolaides (Dr. who treated Sammy) and Dr. Jim Leckman at Yale. This morning's segment showed the little girl reading the "Saving Sammy" book. Maybe Pandas wil get a bit more attention again on the TODAY Show! Dr. Nancy said they would continue to follow this story. http://today.msnbc.msn.com/id/33852290/ns/...y-today_health/

Deb Forgot to mention one thing about Dr.Chiniwala, she doesn't look just for the titers in order to give you antibiotics, based on my son's experience, she knows not to look at just those numbers, but based on other symptoms. Linda

Hi Deb, I think we spoke on the phone regarding Dr. Goebel. You could always try asking him to speak with Dr. K in Chicago, maybe this would change his mind. Otherwise, you can always call Dr. Chiniwala. She prescribes the antibiotics for me in Dallas. I did ask Dr. Cunningham about drs here in the Dallas area, and the only one that has contacted her is Dr. Rao and he follows her recommendations. She also told me she would recommend a dr. in OK, if you want to travel there. There is also another Dr. in Houston who is treating Pandas, Dr. Collard Suite 900, 7400 Fannin Street, Houston - (713) 795-9500 Linda

Kim, Are you in Dallas or Houston? Linda

Well then this makes me want to raise my son's dose of 250 to 750 or 1000 of zith to see if it makes a difference with the tics. Would appreciate any and all opinions. Linda

Mama2alex, So glad that you have found help for your son. You say your son is 9 yrs old, can you tell me what he weighs? Curious as to the 750 mgs. Would you mind posting the name of the doctor, as it might help someone else on the board. Linda