New Member, information overload, Finding a Doctor

[JohnRatliff]

Hi All,

 

We live in Pomona, California which is about 30 miles east of Los Angeles.

 

I am new to the group. I have a 15 year old daughter (DD15) that has all the symptoms of PANS. She has gone through a dramatic change in behavior this past 6 months ad we have been in somewhat of a panic trying to find help. We have not had a professional diagnosis yet. We are awaiting appointments at the UCLA clinic for assessment next week and a pedneuro doctor in two weeks. Two weeks ago we were introduced to the term PANDAS. That very evening my daughter had a violent episode and we looked at her throat and it was inflamed on both sides. We gave her some antihistamine cold medication and the next day brought her to see her pediatrician. DD15's mom, proceeded to ask about PANDAS. The doctor promptly replied, it's not PANDAS. PANDAS is very rare. Once in the examining room the doctor took a quick look and proclaimed no strep and she was off to another patient. DD15 was not being cooperativeness in opening her mouth and I suppose the doctor had no patience for what seemed to be her stubbornness Luckily DD15's mom, a nurse, insisted on a strep titer and a course of antibiotics. Two days later the lab called with the numbers and said she was positive. DD15's extreme behaviors went from dramatic mood swings, tantrums and complete meltdowns multiple times a day to almost going away completely. She still had a bouts with mood changes but only a few. So mom and dad are pretty convinced that a professional diagnosis will be PANS.

 

So my first problem is my daughter's doctor is not clued in on PANS and is traditionally educated on behaviors. We feel the strong need to find a doctor that is more familiar or open toward finding out just how damaged her system is, so we can put her on a appropriate treatment course.

 

The site has so many informational threads, that I could spend countless hours browsing through them. If there is a FAQ's, or any behavior / treatment forms for management, I would appreciate a link.

 

Thanks

Edited March 31, 2013 by JohnRatliff

[LNN]

You can start at these two threads:

http://www.latitudes.org/forums/index.php?showtopic=3928

 

and

http://www.latitudes.org/forums/index.php?showtopic=18905

 

These are 'Pinned" and are always at the top of the screen when you first come to the PANS forum.

 

You may also want to show this to your doctor: http://ocfoundation.org/PANDAS/

 

Then feel free to ask more questions. Don't be surprised if the next doctors you see also dismiss Pandas. Our community's response to "It's rare" is "No, it's just rarely diagnosed." But hopefully someone here will be able to help you find a "local" (i.e. within a few hours drive) doctor to help.

 

One thing to consider tho - this is not a private forum and your posts here will be archived for a long time, easily found through a google search. If you've created an account using your real name, you may want to create a new account with an alias and you may wish to edit your original post and instead of using your daughter's name, replace it with something like DD16 (darling daughter who is 16). But certainly up to you.

Edited March 29, 2013 by LLM

[airial95]

I'm not sure - but ddidn't Stamford just recently open a PANDAS clinic? I could be mistaken - we're on the other coast...

[lfran]

Sent you a pm (private message) with doctor Info

[Mayzoo]

Here are two URLs that may help you find a PANDAS friendly doc:

 

http://pandasnetwork.org/resources-new-research/providers/

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

Finding a PANS friendly doc is vital to getting your journey off to a good start.

 

Also, keep a log of her behaviours as far back as you can remember to now. Make detailed notes of things that help or seem to hinder her progress. Also keep a record of progess/regression with any addition of supplements or ABX. Logs are very important.