Parent's axiety

[Wickedmaineah]

So I am sitting here today with complete anxiety.

My son was recently found to have PANDAS. He had strep for about 6 months before we found it. During that time he developed a horrible tic disorder that escalated to about 100 every hour. His teachers were terrified he was going to hurt himself.

We ran some normal ones in relation to strep, pneumonia, but the one I am most anxious about is lyme. I just want it to come back negative so I can put that question to rest.

I called the hosptial today and they were mailing out the tests that were completed. Most likely they will be in Friday's mail, but I will be stalking the mailman tomorrow just in case!

As a parent, I need answers!

[LNN]

I can understand how the anxiety is killing you. We've all been there. As a parent of two kids with Pitands, with a lyme component, I get how it can be a scary prospect. But keep in mind your son can only get well with the correct and complete disagnosis, so it's good that you're willing to look at all possibilities. I don't know how much of the lyme discussion you've followed, and I don't want to add to your anxiety. But the standard western blot lyme tests don't always catch incidents of lyme disease. Many of us have tested with other labs, usually Igenex, that looks for things the standard test doesn't. And some have gotten very different results from these tests.

 

I'm not suggesting that your child has lyme. I don't know the specifics of your story. But if your test has been done by a local lab, then you may want to keep a re-test thru Igenex in the back of your mind if your son doesn't respond to Pandas treatments. You can start a discussion on the lyme forum if you'd like more information. I know the Pandas parents are understandably tired of the lyme discussion.

[kimballot]

So I am sitting here today with complete anxiety.

My son was recently found to have PANDAS. He had strep for about 6 months before we found it. During that time he developed a horrible tic disorder that escalated to about 100 every hour. His teachers were terrified he was going to hurt himself.

We ran some normal ones in relation to strep, pneumonia, but the one I am most anxious about is lyme. I just want it to come back negative so I can put that question to rest.

I called the hosptial today and they were mailing out the tests that were completed. Most likely they will be in Friday's mail, but I will be stalking the mailman tomorrow just in case!

As a parent, I need answers!

 

Yes.. this is an anxiety-provoking time! Once you get all the test results you will be able to start to chart a course for your child and I know I always feel better when I am being productive instead of just waiting! I agree with LLM that your course will likely not be a straight path to health for your child. Some families are fortunate to catch PANDAS early when there is "only" strep involved (though strep is certainly destructive itself). I wish you well as you make your way through!