New from South Florida...I don't know where to begin.

[BellesMom]

Hi, my 8 year old daughter has developed several tics over the last 10 days. They may have started months ago but I thought the facial (nose & mouth kind of twitch) movement was due to allergies. She would shrug her shoulders when I picked her up from school but I thought it was a habit or tense shoulders from sitting all day. I had no idea what tics were! Early last week she woke up and was shrugging and jerking head every few minutes. I made an appointment to see her pediatrician and by the time we went her hands (wrist & fingers) were also jerking and flexing. It's gotten so bad so quickly. The soonest appointment I could get with a pediatric neurologist is in September (10 weeks from now). Should I start seeking out holistic MD's? I plan on changing her diet and I'm reading Sheila Roger's book Natural Treatments for Tics & Tourettes. I read on PANDAS but she hasn't ever had strep throat, should I still have her tested for it? I'm just not sure where to begin or who to turn to. Any advise would be greatly appreciated.

 

Maria

[MomWithOCDSon]

My DS had never had a classic case of strep throat (sore throat, fever, etc.), either, but it turned out he did, in fact, have PANDAS. Kids can be classically asymptomatic, but if they've been exposed and their immune systems get set off, PANDAS/PANS can be the culprit nonetheless. Plus, it doesn't have to be strep; it could be viral, lyme-related, etc. Not that an autoimmune condition is necessarily/always behind tic behaviors, but I would think you would be best to rule that out definitively before you move toward other treatment protocols.

 

I'm not sure which pediatric neurologist you're scheduled to see, but you should be aware that many are not PANDAS-savvy or even open to the possibility that infection and/or autoimmune may underlie the condition. If you are within a reasonable distance of USF, I would reach out for an appointment with Dr. Tanya Murphy first and foremost. She is well-renowned not just in Florida but nationally for her work with pediatric patients of your DD's symptomology, and she can help you determine whether or not this is PANDAS or PANS related. Below is a link about Dr. Murphy.

 

http://health.usf.edu/medicine/pediatrics/profile.html?person_id=62247

 

Good luck!

[BellesMom]

Thank you for your reply Nancy! I did contact Dr. Murphy and I'm waiting to hear back for an appointment. I'm thinking of printing out information on PANDAS along with the type of test that need to done and what to look for so that I can get my Pediatrician to start looking into that as a possibility.

[Dedee]

Your pediatrician should be able to order strep titers and Mycoplasma P titers at a minimum to get started. In the mean time go ahead and do a throat swab and have them run both a rapid strep and culture it also. Make sure they get a very good swab. You should not wait months to get started on antibiotics. You can get some good information off of the Pandasnetwork.org website for your pediatrician. If your pediatrician isn't helpful you need to be insistant or change doctors. This is not a time to play nice. JMHO.

 

Dedee