does this sound like PANDAs?

the world's best mom

Sun, Apr 01 2012, 4:12 pm

My ds has always been sensory. His behavior got a lot better this year, and then got worse again, more recently. He had strep with no symptoms a couple of weeks ago- I took him to the doctor because he was coughing, but did not suspect strep. He was coughin terribly again now, so I took him back to the doctor and he has strep again.

What makes me suspect PANDAs is that he has developed a tic in the past couple of weeks. He keeps blinking his eyes.

I believe OCD behaviors are supposed to be a symptom. He has always had some OCD behaviors. For example, he cried for the last half hour of Shabbos because he wanted new batteries in an old toy. When SHabbos was over, I had to go buy new batteries because we didn't have enough and he wouldn't stop crying about it. Does that count as OCD?

Or the fact that now, that toy which has new batteries has to stay under the table when he's not using it, and nobody is allowed to touch it?

amother

Sun, Apr 01 2012, 9:15 pm

I can't give you an answer.. just that my ds sounds a lot like urs!! he's also sensory.. and when he has strep he doesn't seem to have symptoms.. he just acts more wild and crazy.. and when its gone, he's so much better. he also had the eye blinking thing more than once.. I found that if we ignored it (which is soooo hard to do) eventually it went away on its own.. when you bring attention to it.. it seems to intensify.. I asked my doc about it.. and he seemed to think Pandas is overdiagnosed.. he said that my son is probably more sensitive to being sick.. which would describe his behavior.. and in general more sensitive and so when going thru an anxious time may develop habits like blinking or other... anyway: good luck!!!

the world's best mom

Sun, Apr 01 2012, 10:38 pm

It's good to hear about another kid with similar symptoms that were not PANDAs. Thanks.

Come to think of it, I think he started blinking last time he had strep and then stopped for a week, then started again. I do ignore it, and I hope his teachers and therapists don't bother him about it. I'm assuming that would make it worse. If it doesn't stop soon, I'll take him to an eye doctor.

supermommy

Tue, Jun 19 2012, 12:38 am

I just stumbled upon this post and couldn't help but add my own experience here. If I were you I wouldn't ignore it for long. If his symptoms persist, get worse, or he gets new ones all of a sudden go to dr. shulman! 2 of my kids have PANDAS and had I cought it earlier I would have saved my daughter (and myself) a good few months of aggrevation. She had a few ticks and what seemed like ADHD. Her school work came to a standstill. We took a blood test but her dso levels were normal. the neurologist put her on meds but those only made her symptoms worse! Then I took her to dr. shulman and found out she had pandas, we started treatment and her symptoms are sloooowwwwly easing up.
My son also has it with different symptoms. Definately don't ignore it. (do ignore the behavior itself though since making a big deal of it could make it worse)
I dont' recommend deciding on your own if it's pandas or not. You should really consult with the professionals in the feild before deciding to ignore certain symptoms.

Mama Bear

Tue, Jun 19 2012, 3:18 am

I had my autistic son tested at his regular pediatrician for the 2 markers for PANDAS and they were in normal limits. it's a simple blood test anyone can take.

the world's best mom

Tue, Jun 19 2012, 6:40 am

I don't think our pediatrician has any idea what PANDAs is. He is around 8o years old. He had never heard of sensory issues until I taught him what they were.

Ds is on antibiotics for strep again now- my kids all keep getting it. But I think the blinking may have stopped a while back- unless I just don't notice it anymore.

Mama Bear

Tue, Jun 19 2012, 10:37 am

Your dr doesnt need to knwo what pandas is. Just ask him to do the bloodwork needed for pandas (Look it up online, don tknow what it's called) and if the results are above normal limits you can then go see dr shulman or some other pediatrician who knows what to do about it. Hazlocha.

the world's best mom

Tue, Jun 19 2012, 11:06 pm

The funniest thing happened today. I was at the doctor with my baby, and he was talking on the phone to another doctor. He was talking about someone's bloodwork and symptoms (which sounded just like PANDAs), and said, "Nowadays we always have to be on the lookout for PANDAs." I guess he does know what it is.

I'm not rushing to bring ds in for bloodwork, though, because he's currently on antibiotics which is upsetting his stomach. His behavior has improved and I think his blinking stopped, so we'll just deal with him as he is. I believe there is no cure, but long term antibiotics can help with the symtpoms. It's just not worth it right now. As it is, I'm in the lab almost daily for bloodwork for the baby- I'm not rushing to bring another customer to them.