Dr. Murphy and Dr. Storch

[sww817]

I was wondering who sees Dr. Murphy in Tampa and your opinion on her? We currently see Dr. L and have consulted with Dr. T. Both are extremely knowledgeable. I just still feel like I am missing a piece of the puzzle. That is probably typical for a PANDAS/PITANDS mom, I guess! I am also very interested in Dr. Storch's program although I am not sure my 6yo is ready for something like that?

 

Has anyone seen Dr. L and Dr. M? Any advice? I hate to compare doctors but just want to decide if I should see anyone else before our next appt.

 

Does anyone have appointment info for Dr. Murphy?

[Dedee]

I have taken my son and my daughter to Dr. M. and my daughter who was 7 at the time went through Dr. S. CBT program. I can not compare my experience with any of the other "true experts". We see someone local that is informed about PANDAS but not a specialist. Dr. M has sent her recommendations for treatment to all of our local doctors. We have been very pleased and have no complaints. As far as the CBT program, it is as good as they come. Your daughter's age is perfect. The younger ones seem to be more open to ideas and new concepts. My daughter did wonderful. The staff is wonderful. Cant say anything but great about the whole program.

 

As far as seeing someone else after already seeing those two wonderful doctors, I guess I would ask what is it you are looking for as to which additional doctor you choose. I think all the specialist have different things to offer. Some more convential, and some more aggressive. I do understand that desire to get another take on things. Good luck in what ever you choose.

 

Dedee

[sww817]

Thanks DeeDee. How did you go about getting into Storch's program? I really would like for my son to have some skills in dealing with his ocd and anxiety and have had a hard time finding the right options. I think this might be a good path to check into more thoroughly.

 

As far as a doctor. My biggest complaint with Dr. L is just accessibility. And it is because she has such a workload. I think her course of treatment has been fine. I do wish she would consult with my local ped. I feel like he is "open" to the PANDAX issues but he doesn't have a great grip on it and I am trying to explain things to him that I do not understand.

 

I would also love a doctor who could give me more complete treatment management. By that I mean abx, ssri, supplements and therapies. Right now I have multiple doctors and I am managing the plan... as I know most all PANDAS parents are. I was thinking the Murphy / Storch path might eb a good fit.

[Dedee]

You have to first get evaluated for the CBT program in order to get accepted. If you wanted to see Dr. M. you could try to do both in the same visit. When you call for the appointment, tell them you are from out of town and need to do both in the same trip and they will set it up. There will be a wait. If you have any questions you can PM me. Best of luck.

 

Dedee

[eljomom]

sww817---I have been wanting to post almost this exact same thing.....looking for a doctor---I agree with what you have said. We see Dr. Latimer and I feel EXACTLY the same way. I am the one managing things, as she is not responsive unless you are in the office. My personal opinion is that she should call her setup more of a "consultation" situation. No after hours care provided in any way. When you need a quick answer to a question, when things are scaring you, and you are not getting a response, it forces the mom to "play doctor," which I don't like to do.

 

I also "feel like I am missing a piece of the puzzle" with Dr. Latimer. We are not a cut-and-dry PANDAS case with a debilitated child, so I don't know if she is geared for that. I think, from what I've heard, that if you are classic PANDAS and debilitated, you are in the best care. And "comprehensive" would be nice too.

 

Sp please keep me in the loop too with any info. on Dr. Murphy.

[airial95]

We see dr Murphy as well. We have had no complaints. We got in for our first appt within 2 weeks, and she is pretty responsive via email. She also has a team of "fellows" that work in conjunction with her. They're all very knowledgeable and very accessible if she's not. It's like you have a practice of Drs available with Murphy overseeing, so you can usually get with so,someone pretty quickly.

 

She is more conservative, from what I can tell, than some of the other experts. She doesn't jump ti IVIG quickly, but is very thorough. Since our son is younger, we're not comfortable with a more aggressive approach, so it's okay with us.

 

Her office also referred us over to an immunologist who was very PANDaS friendly and knowledgeable. We also have done therapy with storch's staff and saw great promise, and they understand the ups and downs of PANDAs

[sww817]

Sounds like some similar stories. My son is young so I am not ready to jump to anything like ivig YET. But also Dr L didn't think he needed it at this point either because he does eventually settle to a manageable place when we get him healthy. It is a bit frustrating to go six months with no contact. Especially when an episode hits as it just has for us. I would love to be able to email!

 

I will probably look into Murphy and Storch. We are in NC so it will not be as easy as dr L but if I can get a more comprehensive plan with one person leading, it could be worth it.

[tpotter]

Without getting into a big battle, if you are still looking for "missing puzzle pieces", have you looked into testing for viruses, Lymee/co-infections and gut issues (such as c-diff, chlamydia, and h-pylori? Quite a few of us with clear-cut sudden onset (and non-so sudden onset) have found that there are more infections going on, because the immune system has been affected. Also, have you had a complete immune system workup?

 

I am not putting down Dr. M by any means. She happens to be one of the few docs we haven't seen, but I've heard fantastic things about her. But, you have certainly been to some of the best, and I know that both would certainly think it appropriate to look at additional possible infections. Having been through this for at least 8 years now (we do now believe that my 18 year old may have had all of this since birth,) We find more stuff, it seems, every day.

 

This is just my personal opinion.

[eljomom]

tpotter...with all due respect...Dr. L will NOT test for ANY of those things, with the exception of Lyme. Not even co-infections. This is one of the reasons we are considering a switch. After almost a year of asking to test for these things and being told they would not be helpful, we want to put the puzzle together too.

 

tpotter...who do you see?? who has tested for all of that for your child?

[sww817]

tpotter- I can appreciate your response. I do believe that my son is PITANDS or PANDAX. We actually have been on this journey for a very long time. Four+ years actually and he probably was affected from birth or very early. We just didn't recognize it. I had come across PANDAS before and considered it because we saw big gains in language and personality when he would be on antibiotics. He was always sick. 100+ fever every two - three weeks.

 

In 2009 he had his first MAJOR exacerbation. I believe it was around the same time Saving Sammy came out because my mom called me and said she had seen this on tv and I should look into it. I told her I had in the past and it didn't quite fit but I would look again. He fit on paper- sudden increase in separation anxiety (severe), tics, ocd, sleep disturbance, even cussing (at age 3!). But it didn't quite fit the strep profile... until three weeks later when I came down with strep throat. Took him for a culture and he was positive too! No symptoms at all! And then the light bulb went off.

 

So we saw Dr. L and she agreed... on paper he was classic PANDAS. But then he did not dramatically respond to antibiotics or steroids. In hindsight that was probably because he was already coming off the exacerbation. That I can explain... the one question I have is the camK which was only 94. I don't even know what I think that means anymore. At the time Dr. L was not concerned with the cam but wanted to see a response from the abx. When there was no major response, we were told probably not PANDAS and given zoloft for the ocd. Zoloft was a terrible fit for him! At that time, I wanted to change his abx but Dr. L did not see the point. So I consulted Dr. T who agreed with a trial of a different abx. Again no dramatic change. And so we abandoned the PANDAS diagnosis and found an SSRI that helped.

 

So after three months of heavy antibiotice... my sickly child did not get sick AT ALL for four months!! Then he got an ear infection- put on Augmentin- then healthy for six more months! This was amazing for us!! And in this time we saw steady improvement in all areas. Then December 2010- Daddy came down with strep. And the battle started again. We consulted with Dr T and went back to Dr. L. Both told us that so much has changed with PANDAS and he probably is a PANDAX child. ABX for a year but that causes the yeast , etc with us as well. So we have a very tricky balance.

 

My son did the abx for 1-2 months and we pulled his tonsils and adenoids. Adenoids needed to come out because of sinusitis and the ent said they were a mess. Took tonsils as well because of PANDAS and Dr T and Dr L both thought this made sense. On a sidenote, deep cultures were performed and they were negative for strep. But there were strep-like biofilms present and my ent thought that might be significant. Again, not even sure what I think about biofilms. That is another biology lesson on my already over-crowded, over-tired brain!!

 

I did take my son off the abx because of yeast concerns and because his last major trigger was the flu. But he started showing signs of a possible exacerbation last week and I found out strep was in the school. He had complained about a stomach ache and a sore throat ONE day. So I took him for a culture and put him back on abx. So far, increase in symptoms but nothing too bad YET. Never heard anything about the culture but I wouldn't even be surprised if they lost it. That's another story....

 

As for the other tests.... Dr. T tested for Lyme. He was p41 present but negative overall. I was told almost everyone tests P41 positive and that did not mean anything. We saw an immunologist in the past... but that was during our "healthy" time and although some of his numbers were low, they were not overly concerning. I am wondering if he should get another workup now that he is not as healthy as he was at the time?

 

As for the change to Dr. M... as I think I said, my main goal is a doctor who can help me create a comprehensive plan and communicate with my primary ped. It is my belief that even at his best, my son will always have some low level anxiety and ocd. So I need a dr to manage what he will need for that in addition to the PANDAX needs. For me that means someone who can understand abx, medical help such as SSRIs, supplements and therapy such as CBT... and how they all need to work together. Now in reality, I am not even sure this person exists!!! But it would be nice??

 

Anyway, I tend to use this board for info and leave short notes like I am missing a piece of the puzzle. In reality, we all are because the research is ongoing. I just want to make sure I have the best info I can find to advocate for my son. That is why I was considering a change to Dr. M. But yes, I do agree that we need to address all possible triggers. I am just hoping maybe she can help me there??

 

And I am always open for suggestions and to hear what path others have already been down.....

[airial95]

My son (and now daughter!) are both asymptomatic to strep. Other than a couple of skin (impetigo) infections on my son, he's never really had any physical symptom of strep, just the OCD/tics/bedwetting, etc... We're lucky to have a PANDAS knowledgeable pediatrician who doesn't look at me like I have 2 heads when I come in for a quick throat culture because my son is "hopping". (usually positive!!)

 

On a side note about Dr. M. Every other specialist she has recommended to us (therapists, immunologist, etc...) have all been very PANDAS knowledgeable and up to date on the latest research. I don't know if it's because they work regularly with her so they keep on top of things, if it's because we are local, so her reputation is well known in the local community or what, but I've liked the fact that if her office referrs us to a specialist, it's likely to be one that we don't have to educate on PANDAS.

 

I know I mentioned it before, but another thing we like about her is the fact that she always has several "fellows" or young doctors working with her. We actually see Dr. Toufexis (a doctor on her staff) more often than we see Murphy herself, partially because my PANDAS son LOVES her. (He takes melatonin to help him sleep at night, on her recommendation, but he calls it "his Toufexis" medicine because she told him to take it. I think he has a crush on her!!) I think the fact that there are others that are easily accessible in her office helps when you're stressed about direction.

[Burnell]

We have seen Dr L, Dr T, Dr Murphy, did the program with Dr Storch's office, and have seen Dr Swedo at NIH and Dr Smith in NJ. Plus local psychatrists and psycologists. We are still feeling our way now a year later as our dd12 relapsed after her only ivig. We were at Dr Storch's shortly after Dedee. To get the appt w/ Murpy, its a different one than w/ Storch's therapy team. You have to set it up first, then if you are goint to USF, go around that appointment. Dr M was good, but for us it was 2 visits and we are done with her. Dr T is very helpful. Dr Scott Smith in Edison NJ was good too.

Anyway, despite all the PANDAS docs, the NIH recommended simultaneosuly going with psychiatry medications and CBT therapy and PANDAS docs. Turns out, its alot of testing and trials.

[sww817]

Thanks Burnell! You have definitely seen the good ones. I personally have a lot of respect for both Dr. T (I have only done phone consults) and Dr. L. I think they have both led me down a good path now that they know more about PANDAS. I will say my first round was not as great... but they were still learning like the rest of the world! My only goal for a switch is to get help with a more comprehensive plan integrating the therapies. I think Dr. M might be good for that. Can I ask why you said you were done with her after two visits? I know every story is different but I am just wondering if her treatment plan did not match your hopes? Or if she was unresposive? Or something else? Feel free to pm me if you would like. Thanks for the response!

[Burnell]

DR M team gave us a treatment plan. But its up to us to find other docs to implement it. First up were supplements. done. Second is psychiatric meds. - we are trying 2 now. Third is wait to try 1 and 2, then do another ivig. We have seen scott smith on that and are soon to have a bunch of tests done to explore that path too.

[airial95]

DR M team gave us a treatment plan. But its up to us to find other docs to implement it. First up were supplements. done. Second is psychiatric meds. - we are trying 2 now. Third is wait to try 1 and 2, then do another ivig. We have seen scott smith on that and are soon to have a bunch of tests done to explore that path too.

 

Hmmm....I wonder if that's what she does for out of town patients? We still shee her office every 3 months for follow ups, albeit often with Dr. Toufexis, but we see Murphy at least every other visit...