Tenex and Topamax

[mdfinx]

We went and saw a tic specialist in the neurology dept of our local children's hospital. My 8 year old son recently developed leg stretching, then proceeded to arm stretching, then to arm convulsions, and now to head jerking. I had never heard of Pandas before this site but he did have two cases of strep throat in the last 4 months, which coincided with the onset of these tics.

 

My son is really bothered by this and is asking for help. The neurologist has recommended Tenex and Topamax. Please can anyone tell me about your experience with these medicines??

[Fixit]

Mom of 3 panda ticcers here....2 in remission...the other...well, still fighting the good fight

jmho...sounds like pandas to me..

please take your son to pandas accepting/knowledgable doc sooner than later....and check for all possible infections, parasites, or other autoimmune conditions...

if you can get this under control..and maintain...it will be much easier...

just popped on for a second but have to run...

[norcalmom]

what state are you in? there is a list of helpful doctors that is pinned at the top of the pandas board, but some are more helpful than others. If you share where you are, I'm sure some local pandas parents can direct you to the best in your area.

 

At the very least - get a VERY thorough examination for Strep- blood work for strep titers (ASO and Anti-Dnase). Consider other types of strep beyond strep throat - impetigo, peri-anal strep (doctors often forget to ask you if your child had a weird rash on his/her rectum...that you may have attributed to not wipping well, and treated yourself with some ointment). Or ANY other odd rash.

 

The strep can be several weeks prior to the onset of symptoms if this is your first or second episode of pandas. And just to complicate things more, people are finding that other infections can set off this reaction as well. Lyme disease and mycoplasma pneumonia (walking pneumonia) are two examples. (and if your doctor will - get IgM and IgG mycoplasma pneumonia titers tested when you do the blood test for the strep).

 

These titers all test if you HAD strep. They are not that accurate - a negative cannot rule out that you hay have had it - but a positive, is definately positive. AND they go down over time - so get in there as soon as possible.

 

Other pandas symtoms commonly include one or more of the following- bedwetting. insomnia, nightmares, frequent daytime urination, OCD (basically ANY odd behavior, or thoughts) intrusive thoughts, extreme irritability, decline in handwriting math skills or ability to copy things, separation anxiety, body dysmorphism, anorexia or food related issues. (there are more)

 

Has there been a rise in any of these things that coincides (or precedes by up to a few weeks) the tics?

 

Pandas can also be just tics - but more commonly has other things associated. So, I'd suggest talking with a specialist.