Very quick couple of questions

[Loufrank]

Hi,

 

I initially posted on this site on the tics board, and a few of you drew my attention to this section, which all seems quite relevant to what my son is doing on and off at the moment.

 

Sorry, I don't know how to post a link ATM, but I've said in my other post that I am going back to my GP on Thursday with the intention of getting seizures ruled out. With regards to the PANDAS possibility, what else should I be asking her. I am warning you in advance that I am in the UK and I am fully expecting the GP to laugh me out of the office...

 

Do I need her to swab him for strep (he does actually have a cold at the moment)?

And what then if is it positive?

What else do I need to ask her?

Is the PANDAS something I should mention to the neurologist, if and when I get referred?

Also, are PANDAS kids more likely to get the nighttime tics and fidgets that he is getting?

 

Obviously, given the choice, I would like my DS to be 100% healthly, but I'm thinking that between seizures and PANDAS, PANDAS is the least threatning option isn't it?

 

I can't help but think how many undiagnosed kids there must be with this! What would eventually happen if it wasn't even diagnosed? Would any further harm be caused, or would it just be a lifelong struggle with tics etc as and when then child falls ill?

 

Apologies for my ignorance, this is all very new to me. I'm having trouble understanding all this information and don't really understand what is actually causing the tics in PANDAS kids.

 

Thanks in advance for any advice.

[thereishope]

First I'll post a link to your other thread....

 

http://www.latitudes.org/forums/index.php?showtopic=7580

 

First,I'll admit I just scanned your other post. There are a few on here from the UK, so hopefully they will check here today and maybe they can give you some advise how to "work the system" over there. I know some have had problems getting strep tests even overseas. If you want a strep test, it may be in your best interest to say that a playmate has strep and your child has been complaining of a sore throat. I don't have a full grasp of the UK system to start suggesting what antibiotics they might give. All I can say is if a child has strep and they are suspected of having PANDAS (even if only by the parent) try to get get something stronger than amoxicillin or penicillin. The most mentioned antibiotics on here are Augmentin and Zithromax. But I want to say Zith is hard to get in the UK?

 

Just so you know, you do not have to have symptoms of strep in order to have strep. Many kids on here never get sore throats or fevers.

Edited March 30, 2010 by Vickie