Is this PANDAS?

[Guest Justajoy]

Hello! I've been reading posts on this forum for several months now, seeking out anything that can help me figure out what to do. Last August, my 10 year old daughter developed an eye tic basically overnight. For a couple of days, she blinked her left eye involuntarily. She didn't even notice that she was doing it. I started my "research" right away, googling everything I could on eye movement. At that time, I didn't even know it was a tic. She had been in a chlorinated swimming pool for hours for three days straight and I had found that chlorine could be a trigger. We pulled her from the pool and almost immediately the tic got better, except for when she was watching TV. Bizarre! Or so I thought. Something else that my husband and I had noticed was that she became hyperactive. She literally ran all over the place. It was like she couldn't be still. I kept researching and found PANDAS. My daughter wasn't sick, no symptoms of STREP. After about a week, I couldn't stand it anymore. We took her to a clinic in town and asked to have her strep tested. After the nurse administered the strep test, we went in and visited with the doctor about our concerns. He said that a lot of kids have tics and that they usually disappear on their own. He didn't want to discuss PANDAS with us at all. I figured that we had hit a dead end with that. At the end of our conversation with the doctor, he read her strep results: positive. She did 10 days of antibiotics. Since that point, her tics have come and gone and changed. She has an eye tic sometimes, a wrist rolling tic, and a neck tic. 95% of the time, her tics are not noticable to anyone except me (because I am watching closely). They are very minor and not disrupting life in any way. But then, she'll have have a noticable day and I start worrying again. Opinions or thoughts? Any help appreciated.... Thanks!

[dcmom]

Hi Justajoy-

 

From what you describe, your daughter may have a mild case of pandas.

 

I will give you my advice FWIW, and I am sure many others will chime in.

 

Hopefully, your daughter's case will continue to be mild and/ or disappear. BUT- after what I have been through, I think you are in the best place now, to prepare for the "what ifs". Some kids have mild cases that go away with antibiotics- others seem to have cases that get progressively worse until properly treated. Since you are in relative calm now, I would get a pandas doctor on board. Someone willing and knowledgeable, who will treat your child (if needed) with antibiotics, steroids, ivig or pex. Tell us where you live- the reality is- you will most likely have to travel.

 

In my experience, the more aggressively and quickly your child is treated- the more suffering you can avoid. If you have a pandas doc on board, with diagnosis, if you have to deal with the "what if"- you will be prepared and able to get quick treatment.

 

Best wished...

[thenmama]

xx

Edited March 26, 2013 by thenmama

[kimballot]

Welcome to the forum -and congratulations for being diligent in finding us! I agree with the previous posters that your fortunate to catch this early and to be at a time when doctors are available to treat PANDAS - even though they may not be local to you. My son also has chronic, long standing PANDAS and so wish we could have gotten the treatment he needed when he was younger.

 

I also agree that your daughter should be tested for infections. Ten days of antibiotics may not have been enough to clear the strep. Also, PANDAS is an autoimmune disorder, and the autoantibodies can continue to attack the brain even after the infections are gone. When this happens, some kids do well with treatments to stop the autoimmune response, like a short course of prednisone. Overall, these decisions may be best handled by a doctor who is knowledgable in PANDAS.

 

Thenmama gave you links to some excellent information (nice job, thenmama!). Your daughter is very fortunate to have you leading the team! Let us know if/when you have questions - I have found folks on this forum to be a wonderful source of information and support.

 

 

Best wishes -

[EAMom]

What antibiotic did your dd get for 10 days?

 

A good place to start would be to recheck your dd (throat culture, do the 72hr culture if the rapid is neg) for strep. I would also test family members to make sure you don't have any carriers in the family (PANDAS kids will react to strep in the environment).

[AmySLP]

My daughter has primarily tics, but over 2 yrs. has had ups and downs with symptoms. She would be consisdered mild most of the time (but has been on antibiotics prophylaxis for all this time), but has had some exacerbations that include, emotional lability, choreiform movements, and most noticeably, compulsive behaviors that involve movement (chronic headstanding, repetive movement sequences). SHe started with a simple eye tic. SHe had an extensive strep history. Stay on top of this. YOu have done a great job finding PANDAS & getting that early strep test, finding this critical connection.