pandas / help

[jakio]

My son started with OCD symptoms last sept 2008 and as the month went by his OCD worsened.

we live in Los Angeles and UCLA is running a study on OCD and we were able to participate in this study. after 12 weeks we had NO result. No doctor from the UCLA studies (some of them are big names in that industry) ever told us that it might be PANDAS.

I discovered PANDAS because I saw "saving Sammy" on the Today Show.

please let me know if anyone knows of a doctor that specializes in this field in Los Angeles, I will be very greatful.

[dut]

Here's a thread

 

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

 

that discusses drs that people have seen and who have been useful. It may contain one near you and if not I'm sure people will answer with other ideas.

 

If you haven't already you may wish to visit this site

 

http://www.pandasnetwork.org

 

good luck....

[Suzan]

Hello and welcome. I can only say that I am very sorry that your son is going through this but I am so happy that you saw the segment on Saving Sammy and that it may help you. I Hope you read the book as well. Although it is very painful to read, I believe it may have some information that will be helpful for you, as well as this forum and the links already provided.

 

Good luck to you.

 

Susan

[thereishope]

I live in Ohio so I have no suggestions for doctors. I'm sorry. But as you being your search (and I'm sure more will post here soon), start by making an appt with your pediatrician and rule out a possible strep infection. Ask for a rapid AND culture. There is a chance your child has PANDAS and you will get a negative result so don't rule it out just because of that. But your initial need/request of an antibiotic will be much eaiser if it does come up positive. If you have a ped that won't do one just because you request it, fib and say your child was exposed to strep and has been complaining of a sore throat.

[jakio]

Thank you so much, I have visited the sites.

Here's a thread

 

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

 

that discusses drs that people have seen and who have been useful. It may contain one near you and if not I'm sure people will answer with other ideas.

 

If you haven't already you may wish to visit this site

 

http://www.pandasnetwork.org

 

good luck....

[EAMom]

Contact Diana Pohlman (through pandasnetwork). She has spoken to Dr. Gupta (who has treated a few pandas patients with IVIG) from UC Irvine so she may be able to give you some information.

 

I agree with Vickie in that you should definitely get your son checked for strep. Do a throat culture (do the 48 hour culture if the rapid is negative.) I would also recommend having family members (siblings esp.) cultured to check for strep carriers. If those cultures are all negative you might consider getting strep titers (ASO/anti-dnse b ) checked on you son (note: these are low in many pandas kids) and getting blood tests run through Dr. Cunningham.

 

Even if the strep cultures are negative, a trial of antibiotics (+/- a steroid burst) can be helpful in sorting out if you have pandas (as can Dr. Cunnigham's tests). (If you are going to try steroids, then do Dr. Cunningham's tests 1st since the steroids can affect the results.)

 

I don't know of any other pandas patients in your area....several in Northern CA and a lot in the East. Maybe someone will post.

 

Here is another website that might be useful http://www.webpediatrics.com/pandas.html . Dr. Kovacevic is in Chicago but several of us from CA (and elsewhere) have flown to him for IVIG.

[thereishope]

I need to cut/paste your "to do " list for new people and save it on my computer. There seems to be more every week. I imagine the more "Saving Sammy" gets publicity, the more will inquire.

 

Also,Beth Maloney is going ot put together a database of doctors too. She said she's gotten more than 400 emails, a handful including names of docs that have helped. I told her to talk to pandas network since they are doing the same. She doesn't have time to that now but said she will be happy share her info with them once it's compiled.

 

 

Contact Diana Pohlman (through pandasnetwork). She has spoken to Dr. Gupta (who has treated a few pandas patients with IVIG) from UC Irvine so she may be able to give you some information.

 

I agree with Vickie in that you should definitely get your son checked for strep. Do a throat culture (do the 48 hour culture if the rapid is negative.) I would also recommend having family members (siblings esp.) cultured to check for strep carriers. If those cultures are all negative you might consider getting strep titers (ASO/anti-dnse b ) checked on you son (note: these are low in many pandas kids) and getting blood tests run through Dr. Cunningham.

 

Even if the strep cultures are negative, a trial of antibiotics (+/- a steroid burst) can be helpful in sorting out if you have pandas (as can Dr. Cunnigham's tests). (If you are going to try steroids, then do Dr. Cunningham's tests 1st since the steroids can affect the results.)

 

I don't know of any other pandas patients in your area....several in Northern CA and a lot in the East. Maybe someone will post.

 

Here is another website that might be useful http://www.webpediatrics.com/pandas.html . Dr. Kovacevic is in Chicago but several of us from CA (and elsewhere) have flown to him for IVIG.