PANDAS rollercoaster ride ......symptoms return

[Kimflow]

Hi,

 

Quick history is my son....autism, strep throat, didn't present normally. Finally figured it out (can't tell me his throat hurts). zpack. OCD develops, choreiform movements, several days later, this time sticking finger in throat, strep throat again. Amox. 10 days 500 mg.

 

SO just yesterday, I swear, his mood was so good and also I noticed that he had started to play independently so separation anxiety was better. This morning he was again very good. The adventitious movements seemed to be a little less frequent.

 

Fast forward to 3 pm today. Ipick him up from school. he looks worried. I saw him squinting. Adventitious movements. I took him to park and at park he fell in sand. On way home, he said sand in mouth but in the back of my mind, I hope that is the real reason that he thinks he has sand in his mouth and it is not that the strep is regrowing and he is just repeating my "suggestion" of did you get sand in your mouth.

 

Then at bedtime, the real kicker. I realize that he did this last night too......he is afraid of the dark. MY daughter figured it out....when I turned out light (I sleep with him...it is just easier as otherwise I am up every night. By the way, he has slept htrough the night every night since Amoxicillin started) he starts scripting loudly. And he says LIGHT. When we turned on light, he stopped scripting. How about that? Never has been afraid of the dark before. Is this a new "fear" related to the PANDAS?????? And to top it off, after figuring this out, he then had one of his OCD motor touch things out of the blue....where he raised his body up and said DOWN and I have to "push" his body down. Last night, he also had one of these.....I guess I should be grateful instead of scared as before he had those motor OCD things about 30 times a day during initial strep throat/PANDAS.

 

What the heck?

 

This is about day 7 of amoxicillin.....is this a resurge of bacteria? Is this the last stubborn strep that fail to die and start to prooliferate once they realize they can overcome the amoxicillin.

 

I see one dr. in DC tomorrow and then I did get into to see Dr. Schulman in New York so help is coming I hope but thought I would write in for you thoughts. it is 12:20 here and can't sleep....figuring out this puzzle and making myself stay calm. It was so nice to have reached a nonpanicked place for a few days.

 

Not sure whether to go to a cephalosporin next as the Aumentin caused raging in him as an 18 month old. The zithromax didn't take care of the inital strep throat. Or maybe longer on Amoxicillin maybe. This goes back to what I have always said through 8 years of autism....need my crystal ball. Thanks for your thoughts.

 

Kim

[patric]

Hi Kim,

I really feel for you as this can be a very uncertain time. For us (and others) amox doesn't work and it actually made things worse for our son and his tics came back more pronounced than before amox. Is it possible to try augmentin again? Have you seen a pandas doc (I can't remember your original post.)

Best of luck and hang in there. It can get better with the right abx.

[Kimflow]

yes, it is all getting started again. I am off to see Dr. Freeman today who has said she will help us and also consult with Deb MCCabe who I couldn't get in to until mid May. Then I haven't had time to post but tomorrow we see Dr. Schulman. She doesn't get much press on here but she was very nice to me and said if I come to New York, she will help us.

 

This morning he has had several verbal triggers. I saw him playing in his mouth. maybe today, we willdo throat swab. I am almost certain he has strep still.

 

Time to go to Aumentin. Maybe he raged as a baby because it was killing off gut bacteria back then.

 

Oh boy.....just keep breathing. This will get straightened out.

[PowPow]

good luck today kim!

and, tomorrow, too.

not from personal experience, but I haver heard dr s can be a big help,too!

glad you are getting in fast!

you are definitely a mama bear and are coming up with a plan b, c and d:)

thinking of you and post to update us!!!