Dr. B or Dr. M

[sww817]

I feel like I have posted a lot these past few days. In short, my son is most likely PITANDS/PANDAX. I am at the point where I would like to get to the root of his problems and would like to change doctors, I think. I am interested in Dr. M because she sounds pretty up to date and works also with the medication side (my son does need a low dose ssri even on his best days) and I am interested in Dr. Storch's program. But I am also wondering if there is something deeper in his immune profile that I need to consider and didn't know if this would be better addressed by Dr. B? Does anyone know if Dr. M will look more completely into the immune side of things? I am exactly in the middle of both doctors so distance does not play into my descision. I would just like to dig as deep as I can this time (the third time down the PANDAX path). I don't think strep is the end answer... although I certainly don't know.

 

So just any opinions or advice as to Dr. M or Dr. B. I don't want to waste any more time with doctors who don't understand the issues.

[airial95]

Dr. M did do a full immune pannel, she actually has done more than one on my son, and referred us to a VERY PANDAS friendly immunologist at All Childrens when his immune panels kept coming back normal even with repeated infections.

 

I don't think she's as aggressive as the other specialists when it comes to IVIG, etc... but that's okay with us at this point because our son responds to abx and is still only 3, so we're not quite there yet.

Edited September 27, 2011 by airial95

[beeskneesmommy]

I can only speak to my experience with Dr. B. He dug deeper than my son's other PANDAS specialist and found underlying co-infections. he started my son on a combo of abx with amazing results. My son has had only 2 day long minor flare-ups over the past couple of months. My family unit feels normal for the first time in a very long time and my son is (except for the 2 days) asymptomatic after being quite ill with PANDAS for half of his life. We have treated PANDAS with abx only, never IVig or PEX. Dr. B is optimistic for a full recovery. That being said, my son is very young (just turned 5) and he has no other dx like Autism so I think his case may be a little more straight forward (sounds crazy for a kid with Myco, Bartonella, Lyme and classic Strep:PANDAS). If Dr. m refers to Murphy, i have only heard/read good things and she is pretty well known in the pioneer PANDAS circles...good luck!

 

Kath

[Dedee]

I can not speak to Dr. B, although I have heard wonderful things. My daughter is a patient of Dr. M. She was very good at looking into all aspects of the immune system. My daughter has a history of two broken bones, hernia repair, & gastric reflux. Dr. M did lots of immune testing for connective tissue disorders that are also in the autoimmune family. Nothing came up positive but she still felt that my daughter could have a mild form. She said there are many different types. She ran alot of labs. Only thing she never brought up was the possibility of Lyme. Dr. M was the one who found my daughters Myco p. but never mentioned the possibility of lyme. We did end up doing IVIG using Dr. M's protocol but I brought it up. In fact I think you could say I begged for it. We weren't making progress with antibiotics and supplements and my daughter was practically home bound. So when I brought it up (while I was blubbering like a baby), she said she thought that was a reasonable next step and agreed. She just isn't one to jump into agressive therapy but if parents are seeking it, I believe she looks at it on a case by case basis.

 

Which ever you choose, you probably can't go wrong with either of those Doctors. I am interested in your experience either way you go. Keep us informed. Best of luck.

 

Dedee

[sww817]

Thanks for the responses. As I already knew- tough decision. I have called to start the ball rolling with Murphy. Now I am compiling the mounds of reports to send to her to see if we are a good fit. My son is six and functions relatively well when not sick. I am not ready for the heavy hitters (IVIG or PEX) yet but just want to make sure we are aware of the triggers if they are not only strep. I will post as things unfold. Thanks!