video the tics -

[smartyjones]

Thanks to everyone who posted info about Dr. Singer. I didn't think he was pro-pandas and your info helped me understand. I did, however, want to at least speak with his office b/c this is where our current path has lead us - albeit a dead end, I wanted to follow until I clearly saw the end.

 

I spoke with Tina, Dr. Singer's asst. She stated he "does not believe there is scientifc evidence to support PANDAS." If we saw him, he would do a neurological workup from historical as well as medical history to see what is or is not going on to determine if there is a neurological component to his behavior. "It all falls on the expert opinion of Dr. Singer."

 

At first she was rather terse and defensive on their position. We were able to work thru that b/c I was just trying to discover what they would do for us. I find it a little odd b/c the dr who referred us - Dr. Wood, Director of Allergy & Immunology at JHU, honestly sounded interested in PANDAS and that Dr. Singer could help us. Athough, I did understand JHU to be not so helpful b/f we went.

 

My son is doing well now. His main issue is an inapporpriate flight or fight reaction. He started school this week and has done wonderfully after refusing to go the last 5 weeks last year. I think he is not in an exacerbation and is responding well to pyschological "tricks" to deal with pyschological after-effects of neurological behavior - i.e. I think he had extreme separation anxiety due to PANDAS and couldn't go to school, then the not-going snowballed into a phobia.

 

Tina did have a very good piece of advice - to video the tics or behaviors. He has had a potty phobia for 2 years and we've gotten no help b/c no one has understood that nearing the potty has been like nearing the lion's den. We have conquered that last week after 73 days of desensitization from anxietybc.com. My son's teacher told the pyschologist he's one of the most intense kids she's had in 25 years. They pysch told me, "frankly, i just don't see it." of course not - you're not listening! he's only seen the sweet, intelligent, cute, shy boy. he hasn't seen the wild animal freaking out b/c his wiffle ball got hit over the neighbor's fence and their dog is out and he doesn't want the ball eaten. a reasonable fear - it's happened before. an over the top reaction. Or the tantrum at dinner when his brother got the ketchup bottle first.

 

i do think if i can have the wherewithall to grab the video camera during this, it will be helpful b/c no one seems to be able to understand what i am explaining.

 

was anyone able to find help from an insurance-covered neurologist? is the course from a neurologist steriods and ivig?

 

thanks!

Kathy

[dcmom]

Hi Kathy-

 

I just wanted to tell you, I have a similar experience. My dd can have a complete meltdown- yelling, crying, screaming, and hitting over minor things at home. This would have been totally out of character before pandas. She also has major potty phobia/issues. And forget it if you are in a public bathroom with an auto flush... But at school, she totally holds it together. I don't think they totally believe me either, that she has issues...

 

Sigh...

 

Yes, a neurologist can rule out other things (lymes, etc.). Then I think their course of action would be antibiotics, then to steroids, and/ or maybe ivig. That would be any doctor's course, I think, who believes in pandas. I would suggest getting a list of all of the neurologists, and maybe immunologists on your insurance plan within an hours drive, and calling and asking them point blank if they TREAT pandas patients. You may be lucky and find someone...