Great PANDAS doc in Florida - Bradstreet, Rosignol and Scott Smith

[Stephanie2]

Well, I had my first appt yesterday with our new DAN doctor (had to ditch the first one when he refused to continue abx). I had an appt with Scott Smith, the PA in the practice. He "had" two autistic children of his own (one fully recovered and one not fully recovered), which lead him to become a DAN practitioner. I didn't know this going into the appt, but both of his boys have PANDAS! Also, I was relieved when he looked at my son's ASO and antiDNase titers (which were both negative after positive cultures) and said, "well, some kids don't have elevated titers but that doesn't mean he doesn't have pandas"! Yay! Also, he totally got my level of desperation and he is a big writer of zithromax due to the anti-inflammatory properties, once a day dosing, etc. He also helps to manage yeast which always flares in my son with an abx. He cultured our whole family, asked if we had a dog (we don't). We will get the results in a couple days. Also, he does steroids where needed as treatment and as a diagnostic tool for the usefulness for IVIG. He quoted Swedo's research at multiple points throughout the appt, and I believe that she regularly speaks at the DAN conferences.

 

Sounds too good to be true, huh? After my experience with Latimer's office, I was thinking that we all need someone else on our side b/c she can't do it all!

 

Here's the catch, which I'm not sure really matters in our case quite yet. Here is how he dosed our zithromax: 200 mg for the first 3 days, then 200 mg every other day for a few doses, then every 3 days for prophylactic use (he said that my son is still too young to do the 500 mg dose once a week). I began to panic with this plan (as I feel that my son does best on 200 mg EVERY day), but he assured me that he wants me to call him the minute things go downhill and he will bump up the dose again. So, in the meantime he is going to run some immunology bloodwork and work to improve his immune system.

 

Also, the doctors in this practice are extremely accessible. You need to do your first appt in person but then most/all appts can be done over the phone after that. Also, the nurses are extremely helpful and efficient. They usually return all emails within 24-48 hours (I have a friend who's son has been with this office and she verified that this is true).

 

With all that said, I will come back to this thread and give an update as we get further into his treatment plan. Keeping my fingers crossed!

 

Here is their website, in case anyone is interested: http://www.icdrc.org/

Stephanie

[EAMom]

 

Okay...that clinic sounds familiar. I think someone has recommended them b-4.

 

Can you add them to this list? I think it is helpful if you start your post with the city, state and doc names so when people look at the outline of posts they can easily find the state they are looking for.

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

 

What's a PA?

[Stephanie2]

Thanks, EAMom, I will do that. A PA is a Physician Assistant, similar to a Nurse Practitioner. He has prescribing rights but works under a physician. I was a little leery about working with a PA, but I watched one of his patients (my friend's son) come off the spectrum within a couple of months and I was pleasantly surprised to see that he really knew his stuff.

 

Stephanie

 

 

Okay...that clinic sounds familiar. I think someone has recommended them b-4.

 

Can you add them to this list? I think it is helpful if you start your post with the city, state and doc names so when people look at the outline of posts they can easily find the state they are looking for.

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

 

What's a PA?

[KeithandElizabeth]

Stephanie:

 

He sounds fantastic!!! I love that he covers everything from abx to IVIG to controlling the yeast, etc.......

 

You must feel so relieved!!!

 

Elizabeth

[sf_mom]

Fantastic.... One more Dr.!!!!!!!!!!!! Yeah. Azithromycin dose seems light but if he is willing to do IVIG your are in good hands.

 

 

Well, I had my first appt yesterday with our new DAN doctor (had to ditch the first one when he refused to continue abx). I had an appt with Scott Smith, the PA in the practice. He "had" two autistic children of his own (one fully recovered and one not fully recovered), which lead him to become a DAN practitioner. I didn't know this going into the appt, but both of his boys have PANDAS! Also, I was relieved when he looked at my son's ASO and antiDNase titers (which were both negative after positive cultures) and said, "well, some kids don't have elevated titers but that doesn't mean he doesn't have pandas"! Yay! Also, he totally got my level of desperation and he is a big writer of zithromax due to the anti-inflammatory properties, once a day dosing, etc. He also helps to manage yeast which always flares in my son with an abx. He cultured our whole family, asked if we had a dog (we don't). We will get the results in a couple days. Also, he does steroids where needed as treatment and as a diagnostic tool for the usefulness for IVIG. He quoted Swedo's research at multiple points throughout the appt, and I believe that she regularly speaks at the DAN conferences.

 

Sounds too good to be true, huh? After my experience with Latimer's office, I was thinking that we all need someone else on our side b/c she can't do it all!

 

Here's the catch, which I'm not sure really matters in our case quite yet. Here is how he dosed our zithromax: 200 mg for the first 3 days, then 200 mg every other day for a few doses, then every 3 days for prophylactic use (he said that my son is still too young to do the 500 mg dose once a week). I began to panic with this plan (as I feel that my son does best on 200 mg EVERY day), but he assured me that he wants me to call him the minute things go downhill and he will bump up the dose again. So, in the meantime he is going to run some immunology bloodwork and work to improve his immune system.

 

Also, the doctors in this practice are extremely accessible. You need to do your first appt in person but then most/all appts can be done over the phone after that. Also, the nurses are extremely helpful and efficient. They usually return all emails within 24-48 hours (I have a friend who's son has been with this office and she verified that this is true).

 

With all that said, I will come back to this thread and give an update as we get further into his treatment plan. Keeping my fingers crossed!

 

Here is their website, in case anyone is interested: http://www.icdrc.org/

Stephanie

[ShannonOtown]

Great news Stephanie. Love to hear about a contact in Central FL! I know you were in panic mode, so this must be a big relief.

 

Keep us posted on your visits and progress. Are you still planning a visit to Dr. Murphy?

 

Shannon

[ajcire]

Sometimes one door shuts to open the right door for you Yeah!!

[Stephanie2]

I cancelled my appt with Dr. Murphy b/c we had to pay so much out of pocket with the new DAN doctor. But she will be my next stop if this doesnt' work out. Keep me posted on what she does next with your son after the study meds!

 

Stephanie

 

Great news Stephanie. Love to hear about a contact in Central FL! I know you were in panic mode, so this must be a big relief.

 

Keep us posted on your visits and progress. Are you still planning a visit to Dr. Murphy?

 

Shannon