Joan Pandas Mom

I heard the same as Peg, it can take up to 3 months for titers to come down.

How true Peg. I have only recently accepted the journey and decided to change what I can and accept what I cannot. It is in God's hands. It is much less stressful.

With my son's last incapacitating exacerbation in mid October his throat culture came back pos. for non group A strep but his ASO titer was 1,014. He has had negative cultures before with elevated ASO titers. I decided I'm not giving the culture too much weight. I think Strep can harbor anywhere in the body. I think Beth Maloney mentions that too in "Saving Sammy". Before my son's T&A in mid Dec. he was on Augmentin 2000XR for 7 weeks without any improvement. Post T&A he was on Clindamycin for 15 days and was doing great 13 days post T&A. He now is on 500mg Azith 4 times a week. He seems to be maintaining OK on that although he said his throat hurt a little tonight and is doing more compulsions tonight than I've seen lately. I feel Clindamycin worked the best but I don't want to continue with it prophylactic because of potential, bad side effects.

Same here. We are 8 weeks post T&A. My son is 15. It did hurt but we kept up with the Tylenol with Codeine every 4 hours and started to see big results around 13 days post surgery. He went back to school 4 weeks ago and is doing really good. He was incapacitated with PANDAS prior to surgery. I should have had his tonsils cultured but didn't think of it at the time with everything going on. His ENT did say they were "gritty" with white puss and he would not have been surprised if there was strep in there.

Hi Joanne, the name of an OCD therapist was Dr. David Tolin, PhD., Director Anxiety Disorder Center, at The Institute of Living in Hartford, CT Phone 1-860-545-7685. I think this is Yale. Good luck.

No neither were PANDAS Docs. I decided to go to one of the Dr.'s mentioned here. I have a phone consult Thursday.

Thanks. I am going to have those done. Please let us know the treatment for carriers and good luck.

There is an office in Hartford, CT that works with OCD and anxiety. I will get the name for you. The OCFoundation.org has a list of therapist in each state too. I hope this helps.

How do you test for a carrier? I am wondering if I am a carrier. I have asked a few Dr.'s if family members should be tested and they told me not to bother getting tested.

"Against Medical Advise" is a great book. I read it about a year ago. I know what you mean about it being too soon to read books like this. I cried my eyes out in the end. I looked into the Hospital Cory, the boy this story is about, and I can't find it anywhere. I don't know if they changed the name. I think he probably had PANDAS too. He woke up one day at 5 years old with an uncontrollable urge to shake his head. I wonder what his father, Hal Friedman, Co Author thinks about all of this current information on PANDAS.

Great point. We are running into so much resistance from local Dr.'s with long term use. It was so courageous of Dr. Nicolaides to treat Sammy in that way. My Pedi felt my son's tonsillectomy was a bit "radical". My response was, "it worked." I hope in time more cases can be documented. You are right about NIH using "preventative" measures and not advocating for use of full- strength. I called there about 1 1/2 months ago and the person I spoke to made it clear they DO NOT advocate the use of long term antibiotics. These articles by NIH are the articles most Dr.'s are going by. I give them credit for searching for more conclusive evidence, but it just isn't in the publications yet. I hope for our kids sakes it gets there soon.

I was told not to bother checking my son's titer until at least 3 months. Another Dr. told me it could take 6 months for it to decline. I like to know for my own records.

As for articles on long-term abx efficacy, I'd love to see those, also. Hopefully seomone here will be able to chime in. Scientific American Mind can be purchased at most of the larger, national bookstores; we got our last copy at Barnes & Noble. You can also purchase issues on-line; I think the cost is $7.95/per, or something like that. Hi Buster, I am looking for info on the justification of using long term abx on GABH triggered auto-immune response and the efficiency in PANDAS diag. I will take all three if it isn't too much trouble. My Pedi only has Dr. Swedo's research and would like more. The Neuro we saw felt the same. We are seeing Dr. L soon.

I was this about the Salem Witch Trials. Could some of their behaviors been PANDAS?

Lyme mom, I noticed a particular lab in your reply. Isn't there a test that has a lot of false negatives too? I heard one test is more accurate than an other. Do you know the names?

I could smell it on my son. I thought I was crazy but a Dr. friend's daughter (she is 22 or so) has OCD. I was talking to him back in October about my son's OCD and PANDAS last exacerbation and he said he could always smell strep on his daughter.

Hi all. Does anyone have a list of recent publications or articles on the use and justification of long-term abx? My pedi is wondering why we should continue with abx if my son is doing much better post T&A. Does anyone know where to buy or view Scientific American Mind?

Hi Vickie. Do you mean tackling the remaining head on with CBT and ERP? My 15 yr old son is so resistant to do it. It has been 6 years of this and I think he is worn out. It sounded like Sammy's just left with little CBT/ERP work.

This is what I found too. I might try it again down the road. A Doctor friend told me there are two aspects of this and I addressed the PANDAS and now need to address the OCD. I think it is too early still and a bit of a waste of time. Thanks for your input and good luck with continued success.

GREAT NEWS! My son's Y-BOCS was 38 in late nov. early Dec. I haven't had it tested again since his T&A and many months of antibiotics. We tried the Augmentin 2000 XR for 7 weeks prior to his T&A and it didn't have any effect. We saw results after 13 days T&A and 4 weeks post T&A has been able to return to school and doing great. I am seeing his OCD creep in a little with the added stress. Did your son do daily OCD "work" or did his symptoms just leave with time and abx?

Sorry to hear you are going through this. It is so hard. I'm glad you found out about the strep. My 15 yr old son had his tonsills and adenoids out 3 1/2 weeks ago. That really helped with the antibiotics. I'm still jumping around trying to find the right one. Sammy in "Saving Sammy" was on 2000 XR Augmentin daily. Good luck and you will find lots of helpful info here.

He was on 150 mg 4 x a day of the Clyndomicin. I can get azith for about 2 weeks. It has been 2 days now on the Azith and he is slipping. I'll try Melanie too and ask about the Clindomycin and pull up that article. Thanks for that. Is Azith affective in New England?

North East part of the U.S is or isn't resistance to Azith? We are in the NE and just switched to it.

Thanks for responding. I can't get in with Dr. L until 3 more weeks. What do you think about staying on Clindomycin?

My 15 yr old Son was on 150 mg Clyndomicin post T&A. He started on 500 Azith today for 3 days. His pedi wants to do 3 days on 4 days off. He is 6'1" and 158 lbs. Is this a high enough dose? Should he go off it for 4 days or stay on continously? It stays in the system for 10 days?