Joan Pandas Mom

I am switching to Azithro. My son is on Clindomycin 20 days post tonsillectomy and it is working great but I have been hearing so much about C diff and how tough it is on the gut. His pedi wants to put him on 500 mg Mon, Tues Weds., then off until the following Mond. Are many doing Azith daily?

Good luck and we will be praying for you and your daughter.

Thanks Coco good advice.

He had a concussion about 10 weeks ago and the MRI is a follow up with contrast this time.

Thank you so much. PANDAS is a tough one as you well know.

Yes, the ENT switched him to clindamycin HCL 150 mg 4 times a day. He isn't treating him for PANDAS though. I'm still waiting to get into a few Dr. I have read about here. The 10 days ran out so we went back to Azith 2 days ago that he was on for 2 days prior surgery and before that 7 weeks of Augmentin 2000 XR without any improvement. I think the Clindamycin worked well. Have you tried it?

Hi Vickie, I found out through my son's Pedi 6 years ago but it was never followed up correctly until now. His ASO titers were elevated two out the 3 times we checked over the past 6 years but I was told not high enough so it probably wasn't PANDAS--WRONG.

Has anyone seen Dr. Ryder at DHMC? He was referred to me from the Neuro here to follow up on my son's MRI results. I was just wondering if anyone had seen him or her and what they thought. Thanks,

I hope everyone had a good Christmas or as good as can be with sick children. My son seems to be doing better, I'd guess about 50-60% better 13 days post T&A. The quick, jerky body movements (he said are compulsions not tics because he is doing them due to an obsession) have stopped. I asked if he was doing better because he was having less obsessions and he said yes, and reminded me his didn't like talking about it! We go for a repeat MRI with contrast tomorrow. There was a white spot on his last one that the Neuro here (who doesn't "buy into PANDAS" is referring him to Dartmouth Hitcock to followup there for MRI results. I will create a new topic but if anyone reading this one has seen Dr. Hyder at Pedi Neuro Datmouth Hitcock what do you think? I called and the receptionist there told me he had worked with PANDAS kids before.

Have you had the titers checked since 2007? Don't let your Pedi make you feel like you are way off. Ask/insist on the tests whenever he has an exacerbation. I let too many people over the past 6 years make me feel I was crazy to ask for a culture without any strep symptoms. Right. I couldn't agree more! I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007. What happens to the PANDAS kids who are incorrectly diagnosed TS?

I am fairly new to this site too. It has been so helpful. Thank all of you. My son can get bombarded with intrusive thoughts against God. This is very upsetting to him because he loves God. The intrusive thoughts are swears against God. The OCD part of PANDAS is so tricky. It tries to creep in anywhere it can. Once you cut one monsterous head off of it, another one grows. Most kids with OCD have to confess. They usually can't tell lies either. I would suggest when your son's PANDAS is under control, going to a good CBT/ERP Therapist. We went to Univ. of So. Florida, Dr. Storch runs the program there. We saw Dr. Ramen and Dr. Aldea. Also, Dr. Gorbis in Los Angelas, CA and Dr. Lee Fitzgibbons in Raymond, ME. They are all excellent. I found the ones that are the best have been trained under Dr. Foa at University of Pennsylvania. Hand in there. It will pass.

Nevergiveup, that is an excellent point, but do we (PANDAS parents) want to promote any Dr.'s work that goes the conservative route with PANDAS? I have been there (past 6 years) and from what I have experience and what I have been reading, especially on this website, is that SSRI's are not effective for PANDAS. Just a thought. I feel like I have wasted many years on that route.

my son just had T&A yesterday. I'll keep you posted. ENT did say they had a lot of "gravel" and white puss in there. Hi, my ds has been on zith a while. Twice a week from October to Thanksgiving, then went to daily 500 mg for five days, then back down to 250. I'm in New York. I don't see much happening there either, if anything he's been worse, maybe three good days in last two months. Maybe Keflex is next, before Augmentin? Don't think higher dose of Zith should have been necessary, based on what I've learned. Any thoughts on T and A (no jokes please)? We're going to move ahead on that in the next month or so.

We live in NH an just switched from Augmentin 2000 XR (on for 7 weeks) to Azith. He was only on that for 4 days because ENT switched to Clindoamycin after his tonsillectomy yesterday. ENT doesn't like Azith. Not sure why. We thought we would switch back after 10 days of clindomycin. What does Dr. Swedo recommend for the North East?

Good Luck--looking forward to hearing the good report soon. That is interesting about the benadryl. My son can't take it either. Maybe we should try again. It has been about 7 years since we tried it.

Lisa, did you have the ASO titer and the Anti DNase B? Was the culture a rapid Strep? Many times these are false negatives.

Dr Swedo talks about the "piano playing" finger movements in one of her presentations. I'll post the site when I find it. My son has a more jerky, almost swiping movement with hand/arm.

This is so interesting. Another PANDAS mom told me to increase D supplements. Did they suggest a dose? I had a "holistic doctor" give me the same information several months ago, and I've had my son on D3 supplements ever since. She (the doctor) had said that it specifically needed to be D3, as opposed to any of the other D vitamins. Does that mesh with the advice you were given?

Good point. He is doing a lot of compulsions right now. I'm hoping these will decrease soon. PLEASE. I would think they should be able to take a little bit to culture and then biopsy the rest. So PANDAS symptoms don't count as "a problem"? Anyway, I'm glad you had them removed.

I wish I had thought to ask. I think it's too late.

Thanks. He is hanging in there. He said it really hurts. Lots of popsicles, fluids and sherbert. I'm so glad they are out. We will see. I have been reading here parents are seeing improvements in about 3 weeks. Glad you are through with the t&a. How is he feeling today?

Hi Buster, What Is a CaM KinaseII Test?

My son had a T & A today. His ENT said they were really large with a lot of "gravel, or white puss" in there. He also said he wouldn't be surprised it they had strep bacteria in them. He also said he was surprised they didn't give him a problem before. My son would have sore throats and swollen glands in the past but not severe. Occasionally he would have a 10 day course of antibiotics for that. My son did have a throat and nasal swab (24-48 hour culture) about 5 days ago that came back negative. I think strep was "hiding" in the cripts of his tonsils. They don't culture the Tonsils or Adenoids but if they did I bet they would find strept.

That's great! I guess I've killed my strep for tonight! Cheers all!

That is great news. My son switched too a few days ago. He had a T & A today so anxiety way up. I'll let you know how it goes. My daughter (age 12, 95 lbs) was switched a week and a half ago to Zithromax 400 mg per day. (I posted earlier today that she was on 500 mg per day, but just realized that was an error.) I saw improvement within 24 hours. Prior to Zithromax, she was on augmentin for 7 weeks with minimal change in symptoms.