JPdad

I also wanted to also add some good news to this thread. I joined this forum in 2013 back when my son was 5. He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years. What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics. At first he was just given the standard course of antibiotics to fight the strep or ear infections he had. Symptoms would improve, but then come right back. After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years. To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so. After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit. Now he’s been completely off antibiotics and flare free for about 5 years. Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics. His original symptoms were awful OCD and tics. He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word. His tics ranged from mild blinking to full upper body contortions. It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal. The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time. It was hard to get him to talk about it when he was young. Last weekend he explained the OCD urges he used to have. Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice. Anyway, every case is very different and I know how it feels to be in the midst of it all. Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child. My son has a 3.8 GPA in High School and has several offers to play college baseball. He is a 3 sport athlete, class Vice President, and has a great friend group. Everything you could hope for a child. All I wanted 10 years ago was to be able to write the post I am writing right now. Wishing you all strength in your battles and the best of outcomes for your children!

Long story short, my insurance changed and I wont be able to visit my PANDAS doc any more who prescribes my son his Azith. Local pediatrician feels uncomfortable about putting a kid on it long term, but would consider it of I could show her some studies on it. Does anyone have a resource for me here?

Do any of those interact with azith?

Bump, curious about this as well.

What is everyone's opinions on the HPV vaccine? It seems like a good thing to vaccinate for as our kids hit the teenage years, but I worry about introducing anything into a PANDAS kids immune system.

Bump for an answer. I am also curious about this.

If some doc wants to tell me PANDAS isn't real and that my kid has Tourettes, fine. Just as long as he can explain to me why antibiotics cure my kid's Tourettes symptoms but wouldn't help a kid at all with actual Tourette's.

For us it took the T&A and daily antibiotics before we got to 100%. We did 10 days of Antibiotics before, IV during, and 10 days after the surgery and he was 100%. Then once his script ran out the tics returned, so he went on Augmentin daily. Since that point he has been 100% for almost 8 full months now. Fingers crossed this cold and flu season passes and he stays where he is now.

Very good news! Do you plan to keep up with proph. abx afterwards? We've seen complete wonders post T&A with daily ABX.

I don't want to say anything negative about the guy because he has helped my son very much, but his office is easily the most unprofessional doctors office I have ever encountered or heard of. Beyond not taking insurance, they don't even have a personalized answering machine message. The receptionist (Silky I think she calls herself) is not helpful or professional at all to put it mildly. It's just very unprofessional and dissappointing to leave for weeks on end and not have somebody there to cover your practice and refill prescriptions for sick kids.

I've been trying to get a Rx refilled for 3 days. Anytime I or my pharmacy call the office it rings to voicemail and there is no message on the voicemail.

It could be strep hiding deep in the tonsils or inner ear. Our story is very similar to yours. After the first PANDAS episode caused by strep, we were helped greatly by augmentin. Every time we took him off Augmentin he'd be fine for 3-4 weeks, then would start a new flare and typically was diagnosed with an ear infection. A few days on Augmentin and he was better. Once the 10 day script ran out you could set your watch to it, and the whole flare process would start over in about 3 weeks. After over a year of this process we finally convinced the docs to removed tonsils & adenoids, put in ear tubes, and prescribe daily Augmentin. Since that took place (cross fingers) he has been 100% healthy and PANDAS flare free for about 7 months now.

My DS has only ever had strep twice that we know of. The first time was before PANDAS, and he was 3. He had an awful sore throat, high fever, and was miserable for 3 days but had no PANDAS symptoms. The second time he got strep he had no sore throat, fever, or any other symptoms. Instead he developed tics, OCD, and hyperactivity. That was the beginning of his PANS journey. I wonder if it is different strains of strep that might be responsible for the PANDAS reaction.

Yogurts and cheeses are known to contain strains of strep cultures. We avoid all yogurt and cold cheese just to be safe.

I think for our kids, the tonsils harbor a bunch of bad bacteria that causes them issues. Many have seen positive results from removing the tonsils coupled with long term antibiotics. I say, if in doubt, take 'em out.