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Do you think more kids are diagnosed with TS or PANDAS?


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Ny son was diagnosed as cronic tic syndrome and the neurologist said it ma very well be TS if it lasts over a year. He had an abrupt case while we were away in Aug 08. He was very severe nearly overnight. I mean skip jumping. Amrs, legs and head jerking not stop. And very loud grunting and bark like sounds. They did titers weeks after and found that he did have a previous infection. The nurse then tells me about the pandas.

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Amy, you're the perfect exmaple of why the association between abrupt changes and the need for a strep test, even if seen as "just in case', need to promoted. It's so frustrating when you have a medical person aware of PANDAS, knows what it is, sees the sudden onset and doesn't bother to swab the throat just to rule it out. I can only imagine your anger and how it could have been caught sooner.

 

Why do doctors and nurses forget you can be asymptomatic? Why do they refuse to believe children under 3 can't get strep? How can we get through to them? Suggestions please. This really bothers me!

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  • 4 weeks later...

I've never heard of being diagnosed with both? As for the list above from TSA, my son definitely fits the bill, especially since it says it can disappear for months at a time. I read somewhere though, that the cut-off was 3 months?

 

 

hiya

 

I too thought there was a three month cut off?????

My dd had a symptom free period for about 6mths a couple of years back......

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I think if a child is dx'd with tourettes or any neurological disorder that is only symptoms based, a search for an underlying medical cause should ensue.

 

Right. I couldn't agree more!

 

I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

What happens to the PANDAS kids who are incorrectly diagnosed TS?

 

Tics are back...have you had his throat swabbed this time? Did your Ped test for strep titers again? 2007 is 2007...this is now, why will he not see if strep is involved this time?

 

Also, Have you seen Dr. T's post about Mycoplasma? I'm not sure if there is a test for that though...strep can be in many places...sinuses, gut, middle ear, skin, tonsils & adnoids, vagina....I would bring all of this up to the doctor, and ask if he is willing to do all the tests involoved with finding an infection, or more willing to just try anitbitics for a month to see if there is an improvement in the tics.

 

Just some of my thoughts...

 

Oh, and about the topic--I agree with peglem.

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Tics are back...have you had his throat swabbed this time? Did your Ped test for strep titers again? 2007 is 2007...this is now, why will he not see if strep is involved this time?

 

Also, Have you seen Dr. T's post about Mycoplasma? I'm not sure if there is a test for that though...strep can be in many places...sinuses, gut, middle ear, skin, tonsils & adnoids, vagina....I would bring all of this up to the doctor, and ask if he is willing to do all the tests involoved with finding an infection, or more willing to just try anitbitics for a month to see if there is an improvement in the tics.

 

Just some of my thoughts...

 

Oh, and about the topic--I agree with peglem.

 

 

Just had titers re-checked and they were very low....again. But (!) his Pediatrician agreed to try abx and after one week, tics basically diminished!

 

Going to create a new thread now as I need more help!

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