AmySLP

My daughter started a s a clear cut strep case with mono in the midst at age of 4. She had strep for nearly 6 months that was recurrent until a covering doc. Put her on clindamycin (he's our reg pediatrician now!) this dose of clindamycin took care of the strep and most of the PANDAS symptoms and then we saw Dr. Latimer a month later who dx the PANDAS and put her on zith. She was doing well so we took her off after a couple of months and she was good for about 10 months until she got strep again and the PANDAS symptoms came back with a vengeance! We then saw Dr.B and have followed with him since. We did find some evidence of borderline positive bartonella and erlichia co infections, but the numbers were borderline, just not compelling enough for us to see the Lyme specialist. Although my daughter did eliminate all residual symptoms with Bactrim and zith combo, so who knows if those co infections may have played a role. I always say the one thing I know for sure is that this all started with strep. We seem to have a positive family history of PANDAS as well. Amy

Thanks for everyone's input. DC mom....this is exactly what we were thinking, in terms of treating any flare ups quickly and trying to treat episodically. We have a Pediatrician on board whose open to whatever we ask for, and have decided to take a break from our bi monthly apps with Dr. B. We saw Dr. Elia at CHOP in December and she thought we should try coming off the antibiotics in the summer and with any flare up, resume. Dr. B seemed to be leaning toward the same plan. I like the idea of Zith. A few times weekly and will talk to my ped. About that. As always, my daughter would not be where she is today without the knowledge and wisdom that has come from the years of advice from others on this site. I am so thankful to all of you for that! Amy

I would also ask your pediatrician for ABX until appt and document daily her symptoms to note is there is symptom improvement, which may help support PANDAS dx.

My daughter has been on some form of daily ABX for over 2 yrs. now and dare I say, symptom free for the last 5 months or so. It took a combination of Bactrim and Zithromax to get her to 100%, which has not happened since onset in 2008. She is now down to a half of Bactrim daily. Recommendation is to try her off all abx come June, as long as she remains symptom free. My idea would be to try a weekly or bi weekly abx as a sort of wean. I'm so afraid to go "cold turkey" after all these years. I realize a half of Bactrim isn't much, but there's a security on giving daily. Any ideas for what to ask for on a less than daily basis as a trial to decide if eliminating all prophylaxis is really going to work. Thanks, Amy

It took clindamycin as well for my daughter to finally clear strep after 6 months, at a higher dose than typical for 1o or 14 days...can't recall which

6 months of constant strep confirmed with rapids and cultures ---no rise in aso.

I thought the same, but with further reading felt that PANS is the umbrella term and that PANDAS remains as a type of PANS. Is that correct?

Hypothyroidism in my 7 yr old

Did see Elia when my daughter was having some OCD behaviors which Ithought we should have a psych weigh in on & my daughter would have been uncomfortable talking too dr b about. She was supportive of dr B's recommendations, but did not like the LT Zithromax , due to a lot of hospital infections being treated with such. We continued with Bactrim only that my daughter was already on in combo with zith & it's working well. We liked her & my daughter felt comfortable through the 2 hour appt. I should say that she is the 3rd dr we have seen re pandas---dr L, dr. B & finally her. It's nice to hear all the perspectives from each discipline. It's been 3 yrs& we r finally steady in remission again.

Duplicate post

Received my daughter's report card with the expected "meeting expectations" in math, but the comment section said she is not confident and exhibits anxiety and worry during math class. Of course I'm upset that we get to a report card to hear this-did the teacher read that my daughter has a hx of a tendency to perfectionism and anxiety as part of her PANDAS. My daughter is telling me she is having problems with timed math facts. What kind of problems do your kids have in math? Is it anxiety based ? My daughter is in second grade. Thanks, Amy

Not sure if this will really be helpful, but in regard to sylvan....the teachers are paid very very poorly, so it would make me wonder about the quality of teaching. They are paid the same regardless of number of kids in group and based on what my sister told me (who is a math teacher and considered tutoring there until they told her that most sessions are group of a variety of level leathers and what she"d be paid) . She couldn't believe what parents were paying for what they were getting in return. I'd consider hiring a math teacher privately.

I can't imagine why we PANDAS parents do not have conversion disorder if stress is the cause!

My 7 yr. old daughter has been in remission from all symptoms for months on prophylaxis. Her primary symptoms have always been tics and choreiform movements & a little bit of OCD. In the beginning of all this (3 yrs. ago) my daughter's initial symptoms included many irrational fears. Yesterday at dinner for the first time, my daughter began to eat and then said she couldn't because she was afraid of the food. When asked why, she talked about the skeletons that we saw at a museum earlier in the day and that she couldn't stop thinking that I got the food there. Hoping this is an isolated issue, but then she told me that other times she has felt afraid of food when she didn't want to eat. In case his happens again, I want to be sure I respond in the correct way. For those with experience with eating fears, can you give me some suggestions? Thanks , Amy

We chose to go to our local media once our daughter was pretty well into remission. My daughter wanted to do it, after seeing some stories of other children. She was starting o talk often about her PANDAS & I thought the timing was right. The only thing I would warn is to ask the reporter to see the edited version before it airs. Our 4 hour of video, over 2 sessions was edited so much, it was disjointed and needed correction. I would love to have a PANDAS parent meeting in Leroy...it would be great to have one here in the northeast!

My daughter has fluctuating tsh, T3 & T4 have been normal and she is neg for antibodies (although she does not seem to mount antibodies to many things--- strep,vaccines.). We saw an endocrinologist who wants to watch the pattern and draw the labs every few months.

My 7 yr old who is 3 yrs since onset of PANDAS, also showing thyroid numbers off. Saw endo. At chop a few weeks back & plan to monitor the labs...seems like TSH increases with PANDAS exacerbation

After months of a difficult to eradicate strep infection, the only abx that worked to clear that infection was clindamycin. Just something t o know about in case the augmenting does not clear it

After months of a difficult to eradicate strep infection, the only abx that worked to clear that infection was clindamycin. Just something t o know about in case the augmenting does not clear it

If you haven't already...read Lauren Johnson's mom post about Sanjay Gupta on their media experience.

I too will be eternally greatful to this site and all the knowledge in this one place....I think back to just 3 yrs ago when I found it &how the content was so different. We have evolved so much as we have learned so much in 3yrs. I have no doubt that without all the info, resources, and support i've found here, my daughter would be much worse off. Thank you, thank you to all of you who have lead me through this journey. Amy

There are many medical conditions that requir long term abc...we are protecting the brain with pandas when out kids remit with abx. I have to keep Telling myself that too. It is my pediatrician who needs to remind me of this every few months, when I 'm questioning that my daughter has done this for nearly 3 yrs & wondering if we should take a break. Every time we do,her symptoms return worse than before and take longer to remit.

Thanks Vickie for including our story in this...My daughter is proud to be on slide 14. AS you know I wasn't so happy with the way our story was edited and reported, however I do realize how it worked in our own community to spread awareness. Coincidentally, our slide falls right after Dr. Elia's quote & we just saw her this past week! Thanks for putting this together. You always do a great job. Amy

google- Chewlry (think I spelled it write)-might be an option for an alternative other than clothing and wires.