Mandatory PANDAS/PANS lecture for docs in CT!

[BeeRae22]

Just wanted to share with those that can appreciate my excitement over something like this My SIL, who works at one of the offices for CT Children's Medical Center just told me that they are having a STATE MANDATED PANDAS/PANS lecture from Susan Swedo this month! With purpose to diagnose!

 

While I did not have ANY luck there with treatment or help for my dd a year and a half ago I can only hope that they will educate themselves so that other parents won't have to go through the that we did with trying to find help for our child. I was told by the gastro surgeon there that performed the endoscopy on my dd that "these things just happen sometimes" (about her severely restricted eating) and their entire feeding team was completely useless for us, and their OT was a waste of time too. No help, whatsoever. Everyone there kept trying to send us to psych. They even gave me a referral to a psychiatrist, and when i called (in desperation) the psychiatrist wouldn't even see her because she didn't treat kids that young! (Of course not, because 8 year olds don't really have garden variety eating disorders!) That's what I got from CCMC, the leading children's hospital in the area, 18 months ago- an ultrasound, an endoscopy, a barium swallow, wastedt time (ours and theirs!) with the feeding team and OT visits, and a bad refferal for a shrink. So you see, this lecture for me is a glimmer of light in the darkness of this disorder-- I hope they will be more open to helping other children. I hope to never be where we were then, and my heart goes out to anyone who's there now.

 

I think one of the hardest parts in the beginning was feeling so helpless and not being able to find anyone to help! It would be so wonderful if more doctors could learn about this awful disorder. It's difficult enough to have a sick child, and it's 100x worse when you can't even do anything about it!

 

Here's the link I found.... Think I can pose as a doctor and sneak in???? I'd love to hear the lecture!!!!

 

http://ct-aap.org/files/2015%20homepage/2015%20April%20CME%20NEWSLETTER.pdf

[searching_for_help]

Oh, beerae22, I feel your frustration! As our dd rapidly lost more and more weight, and she had physical symptoms as well, I took her to several docs, telling them of her PANDAS, and all they would do is say, "It's probably just a virus", and ask if we wanted to try another psych drug. Down to an 11 BMI, she ended up in ACUTE eating disorder center in Denver. Strangely, after only being there a few days, (not enough to get any weight on), she started feeling better mentally and physically. We can't help but wonder if the plasma exchange or the IV abx for Lyme had finally kicked in, but something had quickly made a difference in her mental condition. She isn't 100%, but is making big improvements, and ERC was pretty angry with us for pulling her out. But they won't acknowledge the PANDAS, and being isolated in an eating disorder place was really taking a toll on her mentally.

 

The WORST experience was the ED/psych unit in our state that we took her to initially. They decided in less than 24 hours to call an ethics meeting - to let us know they felt she was competent as an adult of 22 that she could make the decision to die, and they would NOT resuscitate! We were HORRIFIED. We told the whole group in the ethics meeting of her PANDAS diagnosis by 2 top docs. We also mentioned that someone with an 11 BMI could not make rational decisions (as her blood sugar had dropped and she was not herself at all.) I finally convinced dd to eat while there and I would bring her home, but then one of the staff members told her is she couldn't control her exercise on her own she could consider hospice, that it was a peaceful way to die. So dd decides she is to tired to go on, and decides to stop eating. That's when we pulled her out, Against Medical Advice. The whole thing was surreal.

 

Fortunately, ACUTE in Denver knew someone at that BMI could not make a rational decision, and told us they would do everything possible to save our dd. Not that they believed/treated for PANDAS per se, but kept her eating and monitored her medically.

 

I am on an eating disorder site called "Around the Dinner Table". It breaks my heart the parents that write in about their little kids and their "eating disorders". These are young kids who are fearful of vomiting and the like, and I just KNOW this is more of a PANDAS thing, and often they mention it will start after an illness. But when I suggest they go to the doc about PANDAS, they don't usually get anywhere, and one mother whose dd is surely PANDAS, was told by her doc that since her strep test was negative, her dd CAN'T have PANDAS. Sadly, this mom believes the doc. Thought it interesting that her other child is on the autism spectrum, which we see so often.

 

Sorry, got a bit off topic, but I so understand your frustration. NO ONE should ever have to go through the we have all been through with the medical community. So glad some change is being made to educate the medical community.

[MaryAW]

I wonder what exactly "state mandated" means. Does this mean that all doctors in CT will have to learn about PANS/PANDAS or just from this medical center. Very interesting!