PITAND friendly doctor in San Jose bay area?

[good1]

Hi, I'm new to the board and am in the midst of trying to figure out what is going on for my 7 year old son. He recently started acting differently -- it seemed to come on overnight. He started having tics like constantly smelling his fingers and then making humming noises and little grunts. He has had periods of jutting his jaw around and rolling his eyes, but I haven't seen that in a while. He is counting and saying the word "period" after counting to four, over and over again. I can hear him doing this throughout the day. Additionally, he is talking a lot more and saying some nonsensical things, and seems to be mumbling and talking to himself a lot. It is disconcerting. The things that lead me to wonder about PANDAS are the following: it came on suddenly (one day he was fine, the next he was doing these behaviors). He seems to have regressed in his behavior -- he breaks down and cries and argues like a 2 year old when he doesn't get his way. This was not typical behavior for him now at age 7, but it was when he was 2 or 3. He's also doing a fair amount of baby talk which is also not typical for him. He has started wetting his bed at night which is not something he did before. He also had a big canker sore on his mouth right around when all these behaviors started and although a canker sore is not strep throat, I read that canker sores can accompany strep, so I wonder about strep being in his system. The only other thing that has happened to my son that I wonder about is that about a month ago he unfortunately got hit in the jaw bone with a baseball bat while practicing for baseball. It did bruise there but wasn't a full hit, so we thought it would be OK. However, today I felt his jaw and there's a strange lump there. Then I read that it's possible for OCD symptoms to start for someone who's had an injury to the head, even up to a couple of months later. I feel like I'm grabbing at straws trying to figure out what is going on here, but it's the sudden nature of his behavior that's making me look to alternate reasons. We do not have a background of OCD or Tourettes in mine or my husband's family, so we are really confused. We're also very worried.

 

My concern now as I try to figure out if PANDAS could possibly explain things, is that I don't think our pediatrician (or most local doctors) will take me seriously if I ask to have my son tested for PANDAS. I don't want to waste time with this and would really like to take my son to someone who understands PITANDS and knows exactly how to do the tests for it. Can anybody out there please refer me to a doctor in the San Jose bay are who can do this? Any other tips or advice for what to do to try and figure this all out would be very appreciated as well. Thanks in advance.

[JJMom39]

There is a list of doctors who are considered PANDAS-friendly on the Saving Sammy Facebook page. (Saving Sammy is the name of a book written by a mother whose son had severe PANDAS.) The following docs are listed in California. I don't know which if any would be close to you so I will just post them all below.

 

Has your son been sick at all lately? Have you considered having him tested for strep (with a rapid test at the ped's office)? You could do that without mentioning PANDAS if you think they won't be open to PANDAS. Some kids have no symptoms when they have a strep infection. My son had no symptoms with his last bout of strep throat. The only indication we had that there was something wrong was his PANDAS symptoms. If you have a rapid test done and it comes back negative have them send it our for a culture. You mentioned testing for PANDAS. There are no diagnostic tests for PANDAS--it's a clinical diagnosis--but the blood tests that are done that can sometimes aid in diagnosis are the 2 strep antibody titers. These are the ASO and AntiDnaseB tests. They indicate if there has been a recent or fairly recent strep infection. Some kids with PANDAS will have elevated titers, BUT some kids will not. Normal titer levels do not necessarily rule out PANDAS. Looking at these things would be a good place to start. It is best to get to a dr. who is knowledgeable about PANDAS.

Have you had a dr. look at your son's jaw? It seems important to have that checked also. My son was diagnosed with PANDAS recently so I am still learning, but there are many experienced, wonderful people here who will be able to help a lot.

 

CALIFORNIA

 

Northern

 

Dr. Margo Thienemann

900 Welch Road

Suite 207

Palo Alto, CA 94304

325-3241

mthiene@gmail.com

 

Sunjya Keshava Schweig, MD

616 Petaluma Blvd. N

Suite c

Petaluma, CA 94952

778-3171

 

Southern

 

 

Robert W. Sears, MD, FAAP (“Dr. Bob”)

26933 Camino de Estrella, Suite A

Capistrano Beach, CA 92624

493-5437

Read his profile at this link: http://www.askdrsears.com/about.asp

 

 

 

Thomas Lin, MD

Irvine Kids` MD

4634 Barranca Parkway

Irvine, CA 92604

Telephone: 949-681-0777

Fax: 949-654-7668

Email: autismmd@cox.net

Website: www.irvinekidsmd.com

 

 

Gerald Maguire

UC Irvine Medical Center

Bldg 3 - Rt88Irvine, CA 92697

Phone: (714) 456-5770Fax: (714) 456-8499Email: gamaguir@uci.edu

Jonathan Auth, MD

Valencia Pediatric Associates27867 Smyth Drive #100Valencia, CA 91355(661) 294-2229 Office(661) 294-8399 Fax

info@valpeds.com

 

 

Center for Cognitive Behavioral Therapy

Barbara Zebb, Ph.D.

27401 Los Altos, Suite 275

Mission Viejo, CA 92691

Phone: 949-226-9626

Toll free phone and fax: 877-230-5429

Website: www.drzebb.com

 

Dr. Harry Pellman

Edinger Medical Group

Fountain Valley/Huntington Beach, CA

714-965-2500

 

Dr. Henry Cramer

11480 Brookshire Avenue

Suite 301

Downey, CA 90241

562-231-2440

 

The following three doctors all worked together and saved a child.

 

Dr. Christina Friar, child psychiatrist

4851 Enfield Ave.

Encino, CA 91316

(818) 708-2575

 

Dr. Kenneth Keer, pediatrician

5525 Etiwanda #212

Tarzana, CA 91356

(818) 91356

 

Dr. Joan Browner, clinical psychologist

17547 Ventura Blvd. Suite 310

Encino, CA 91316

(818) 995-0368

[JJMom39]

Forgot to mention that there are a handful of docs in the country who are considered PANDAS experts. Some of them do phone consults. Dr. K. is one of them. You can check out his web site. I'm not sure which of the others do--someone else might be able to chime in on that. And, if you haven't already, check out the Helpful Threads folder at the top of the forum page--there is a lot of great information there.

http://www.webpediatrics.com/

Edited April 2, 2011 by JJMom

[EAMom]

Contact Diana Pohlman at PANDAS network.org http://pandasnetwork.org/ She's also in the Bay Area.

 

There's also list of Bay Area docs on this forum but I can't get the page up (under helpful docs thread).

 

I would also get everyone in the household throat cultured (do the 72 hr if the rapid is neg). Lots of PANDAS kids get strep with no other signs except behavior change (and/or tics). Also, you want to make sure nobody in the house is a strep carrier. This is something your regular doc can do.

 

I think there is a new doc (immunologist?) at LPCH who is a PANDAS believer. I don't remember his name...but there were some posts a while ago. Maybe Diana P. will know?

Edited April 3, 2011 by EAMom

[EAMom]

Here is info. from Norcalmom... Sean Mcghee (sp?) is the new immunologist at Stanford (LPCH).

 

http://www.latitudes.org/forums/index.php?showtopic=13069&st=0&gopid=108802entry108802

[good1]

Thank you, JJMom and EAMom, for all of your helpful information -- it is very appreciated. I've got a lot of work to do!

[EAMom]

good luck! I also sent you a pm.

[Phasmid]

Sean McGhee, M.D., was my son's doc at UCLA and he is now at Stanford, Packard Children's Hospital.

 

 

New Patient Appointments

Parents and Patients

(888) 275-5724

 

 

Sees Patients At

Medicine Specialties

730 Welch Rd 2nd Floor

Palo Alto, CA 94304

(650) 497-8841

 

 

Mailing Address

Pediatric Allergy and Immunology

269 Campus Drive

CCSR Building, Room 2115 MC 5164

Stanford, CA 94305

(650) 498-6073

 

 

Fax

(650) 498-6077

 

 

[norcalmom]

He also sees patients at the Lucille Packard clinic location in Los Gatos. LPCH is part of Stanford.