Down a new road - referral to Dr. Murphy

[airial95]

Had quite the intersting, but completely satisfying, visit with our pediatrician today. As many of you have heard me brag (and are probably sick of hearing it), we have a very PANDAS friendly Dr who is very up to speed on PANDAS and has treated a few cases. He started us on abx at the onset of our 2 year olds son's symptoms as an option to the alternative - psych meds.

 

Well - our son over the last week has developed what I think is our first tic. A mouth grimacing thing that looks like he's having a stroke (the right side droops significantly). I've watched it for about a week to see what was up. When I started noticing it more during his anxiety times, I decided it was time to call the Dr. This morning during drop off at school (one of our worst times of the day) he was doing it at least 1x per minute.

 

At first, when our Dr. saw it he said it looked behavioral, not a tic. After talking for several more minutes and him discreetly observing Bummy while he played, he changed his mind and said it may be a tic - it's just hard to tell at his age and with his symptoms thus far.

 

So - he's finally referring us to a neurologist. I give him credit - because he said the reason he hadn't made the referral before is b/c most neurologists dicard PANDAS and go straight for meds. When I assured him that after the major success we've had on azith I have NO intention of putting my kid on any sort of happy pills he felt a bit better.

 

In practically the same breath - he mentioned a referral to Dr. Murphy too. When I mentioned I'd heard of her (I told him about our little home away from home here - he was eager to hear what other things I may have learned that he didn't know about yet!) He wants us to see her as well as a second opinion on the PANDAS just in case we get push back from the neuro. I like the way he thinks!! The best defense is a good offense.

 

I brought up the focus on here of all the blood work/titers that everyone talks about but we haven't done yet. I asked him again if we should be running them - his response - all that will tell us is if he's had a strep infection - which we already know. But then we talked more about the CamK test. He had heard about it, and has read a bit about it - but didn't know that we could get him tested for it if we wanted to. He agreed that I should contact Dr. C. to see what we need to do to get the kit and he's going to do more research into the test. He's going to do the blood draw right in his office to make sure it's done right too. God I love my pediatrician! How often do you hear that here?

 

So - my next question, which I've seen on here a million times, sorry - how do I get the CamK test?

[mandyknowles]

Where is this Dr. Murphy at?

[airial95]

Sorry - she's one of the Dr's talked about on here regularly - she's a psychiatrist in the Tampa area of Florida. She's also doing quite a bit of research on PANDAS and is considered one of the leading authorities.

 

We're just lucky she's in our backyard!!!

[Fixit]

. As many of you have heard me brag (and are probably sick of hearing it), we have a very PANDAS friendly Dr who is very up to speed on PANDAS and has treated a few cases.

 

Yes....can you stop now....

[airial95]

Yes, but without your advocacy, we wouldn't have a great pediatrician...so THANK YOU!!!

[kimballot]

Glad to hear you have a good pediatrician. Please ask him/her to think about writing something in pediatric newsletters - it does not have to be a scientific journal - just a newspaper or newsletter about PANDAS experiences would be good to share.

 

Info. on Dr. Cunningham's work can be found on the pandas resource network website at:

http://www.pandasresourcenetwork.com/research-programs.html

 

Remember - the test is not free. Currently they are asking for $400 to cover the cost of the test.

 

Best of luck!

[airial95]

I'll ask him to publish in a newsletter, that's a great idea. I know I'm obnoxious with my great pediatrician - but if not for all of you carrying the torch I don't thin he'd exist. I knew the test wa $400, I ju st needed to know where to go! Thanks!

[airial95]

Sorry about all the typos...checking in from the iPad

[Joan Pandas Mom]

I think she is at Alls Children Hospital at University of South Florida.

 

Where is this Dr. Murphy at?