DS has had pandas since 3. He had sudden onset compulsive urination that lasted 3 weeks. He endured many medical tests and was written off as having pollakiuria. I came across pandas online, demanded a strep culture and it came back positive. OCD stopped within 24 hours of starting antibiotics and no strep symptoms whatsoever.
Over the years we've had exacerbations resulting in a few tics and OCD behaviors. These things always cleared up with antibiotics and it was thought his pandas was "managed"
Thing is, DS was never the same are that first onset. He had no eye contact, was always irritable, lacked social awareness, lacked empathy, lacked self care skills... Lots of subtle things that added up to an Asperger's diagnosis at age 5.
I've always questioned that diagnosis and felt in my gut that his issues were biological in nature. I went with the Asperger's diagnosis as it's easier for the school to understand and it was given by very very reputable evaluators.
Last summer DS has his tonsils out and has been strep free since. All the behavioral issues persisted except for tics and OCD, I was coming to accept the Asperger's diagnosis and resigning myself to the fact that this is what he is. Irritable, explosive, distant, inappropriately silly at inappropriate times....
In May DS was treated with omnicef for ear infections. Following those antibiotics he had terrible diarrhea for a month. His DAN doctor put him on Flagyl for the diarrhea.
A week into Flagyl and he was a completely different child. TYPICAL!!! He's suddenly doing things he's NEVER done. Normal eye contact!!!! Pretend playing, mind blindness vanished, easy going, empathetic .... It's absolutely amazing.
I really can't express the change in him. Two months ago I received some bad news and wept openly in front of him for an hour. Not once did he notice. Didn't ask me what was wrong or acknowledge it in any way. Two days ago I stubbed my toe and said "ouch" under my breath. MY CHILD rushed to my side, asked me what happened and hugged me in sympathy, telling me he was sorry I had hurt myself. HOLY SWEAR WORD!!!
Coincidentally, DS was scheduled for a dyslexia screening this week. The examiner quickly ruled out dyslexia, saying he obviously reads way above grade level. She spent the rest of the day with him and said she doesn't see him having Asperger's. We wont get her final evaluation for a week, I can't wait to see what she says!
I know this may be fleeting, but he's been "with us" two weeks now. I'm enjoying every moment and know he may be gone again as soon as a virus invades his delicate system. It's very bittersweet seeing him this way for the first time. Our days used to be spent in frustration from waking until bed. It's been nothing but pure joy for the last two weeks.
DAN is putting him on vancomycin just to be sure and wipe out the rest of the assumed c diff.
I'll keep you posted. Hope this helps. Maybe rotating flagyl in with these kids that are on antibiotics so often could be the key for a lot of us??!!
Edited by TracyRee, 22 June 2012 - 12:51 PM.