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Posted (edited)

I'm totally confused. I thought antibiotics were just supposed to protect against further damage. But my dd (age 8) actually picked up an activity book and did a crossword puzzle. Actually read the clues etc. She is still not sleeping and has her tic among other things, but she hasn't picked up a book in a couple months and has freaked out every time I mention it. She was diagnosed with PANDAS in 10/08 and then started Chorea symptoms this June around the same time she stopped reading.

 

Does it make sense that Penicillin (250 mg twice a day) would make her able to read again? I've read here that many people put their kids on antibiotics for long periods of time. But why do they work? I thought one had to reduce the inflammation, do antibiotics reduce inflammation? She also is now getting bad headaches the last couple of days. Sorry if this is a silly question, I feel like I should know it after all the research I've done but I'm still not getting it. After 2 years I would think only steroids would make a difference. I'm slow I guess, I need a PANDAS for idiots book.

 

Thanks.

 

Kristy

Edited by Kristy S
Posted

When our son was first diagnosed and treated with abx for a positive strep infection, we saw an immediate (within 48 hrs) change in his willingness to write, color, do mazes, work on his letters, etc. He is only 4, but after learning to write "A" at age 2, he had pretty much refused to pick up a pencil for over 2 yrs--hated coloring, couldn't use scissors, etc. We had him in OT to try to help him learn, but he wouldn't do it. Then, within 48 hrs of being on antibiotics for the first time, the kid started pulling out coloring books, activity books, writing his letters, you name it. He wanted to paint, glue, anything he could get his hands on. He spent an hour doing it one day, and the next day he pulled out his scissors and spent another hour cutting anything I would give him---coupons, ribbons, paper. I almost videotaped it, it was so astounding. After 2 years of refusing, it was the only proof I needed that we were on the right track with this.

He isn't quite as gung ho about it anymore, because I think he realizes it is hard for him, or used to be. But it was profound, and sudden. So yes, I think it's possible that is what you are seeing.

Posted

Our experience was the same--

 

One of the original Pandas researchers (Dr. Perlmutter) treated our d at first.

She put our d on full strength Amoxicillan. I called her within (literally) the first 48 hours to ask if it could be possible that the OCD symptoms could be "going away"...

 

We saw a marked improvement fairly rapidly the first 3 times she was put on short term full-strength Amoxicillan. Dr. P replied that yes it was very possible--and she shared with us that Amoxicillan had been found to be anti-inflammatory during research at NIH (though never published.) I do not know the reliability of this -- but can say that antibiotics, we believe, have definite effect (whether it is solely anti-inflammatory or sone other response mediation that occurs--we do not know yet obviously.)

 

:) And yes, our d has now been on full Amoxicillan for 19 months--

I want to add, that overall it took about 6 to 9 months, and two steroid bursts before she was back to being herself again....it takes time to fully heal.

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