Fever, episode, help

[kgrrl]

I'm new to this and here's my story. My son is now 3, but 6 months ago he had a sudden onset of tics plus behaviour after a response to a viral infection of the throat (did not test positive for strep). The past 3 months his tics + behaviour waned and he got an infection, a very high temperature a couple of weeks ago and now we are having the same episode. He has not been himself for the past 3 days, very hyperactive, sleep disturbance, defiant, physically aggressive, repeating the same song, which his baseline is not himself - happy, calm and precocious. His neurologist said to sit tight as it is to be expected with a tic disorder and it has happened before. I feel so helpless and to just wait it out and do nothing doesn't seem acceptable. I don't know where to begin. We got a second opinion from another neurologist and said the same thing about waxing and waning. What other doctors should we be talking to? I'm very worried.

[Chemar]

Hi

even tho he did not test positive to strep I would suggest you also post on our PANDAS forum as what you are describing sounds very much like infection triggered tocs/behavior

http://www.latitudes.org/forums/index.php?showforum=17

[mom24]

I'm new to this and here's my story. My son is now 3, but 6 months ago he had a sudden onset of tics plus behaviour after a response to a viral infection of the throat (did not test positive for strep). The past 3 months his tics + behaviour waned and he got an infection, a very high temperature a couple of weeks ago and now we are having the same episode. He has not been himself for the past 3 days, very hyperactive, sleep disturbance, defiant, physically aggressive, repeating the same song, which his baseline is not himself - happy, calm and precocious. His neurologist said to sit tight as it is to be expected with a tic disorder and it has happened before. I feel so helpless and to just wait it out and do nothing doesn't seem acceptable. I don't know where to begin. We got a second opinion from another neurologist and said the same thing about waxing and waning. What other doctors should we be talking to? I'm very worried.

 

I have 2 sons w PANDAS 9 and 4. My 4yo is what you describe and has been running a low grade fever (I didn't even know). Have you also considered checking for Lyme disease and myco plasma? DS4 has bartonella which is VERY similar to what you have described and we have been dealing with this since he was 3 and had no idea of what was causing the symptoms. It waxes and wanes. Our immunologist referred us to a Lyme Dr to treat that and he treats the boys who both have PANDAS. Also, some antibiotics have helped both immensely. You just need to find that right mix. Hang in there! Good Luck :-)