need reccomendations DAN doc in FL

[airbucket]

hello everyone -

having learned so much here i am now looking for a "DAN" doctor for my son in Florida. I am willing to travel to any part of Florida for a good one. Can anyone make an suggestions please? I got the list of DAN doctor off the autism ARI web site but it always helps to have a first hand recommendation. I am also looking into seeing Dr Murphy at U of F and also was looking into Dr Aronson-Ramos - her web site is impressive, does anyone have any experience with her? She was on the DAN doc list, dont know how "alternative" she is in her choices of treatments.

 

ok thank you. Happy to say my son is off Abilify as of today! Hopefully that will be a good thing! Thank you.

[Chemar]

hi airbucket

 

most DAN docs are open to alternative treatments

 

Dr Robbins is an environmental doc and comes highly recommended...carolyn_lsc has personal info there

 

 

re Dr Murphy

do remember she is an open minded conventional doc who specializes in PANDAS and so is good to see if you want to do testing for PANDAS, but her protocol for TS is not alternative. she doesnt push meds but does offer them

 

Our physician is no longer here, and sadly I can no longer feel comfortable recommending the other Doc we saw here, after her total misdx of my son's Crohn's ...not on the ball anymore and too much into "trendy" tests etc

 

hopefully others will have input...dont know if Andy still reads but he is in south FL too

[Guest]

Hi airbucket,

 

Yes, I highly recommended Dr. Robbins from Florida! I've been seeing him since 2004, and he is an awesome doctor! In fact, I just got back from my appointment with him to recheck my allergies in order to update my allergy shots.

 

Carolyn

[bmom]

Carolyn, Is this your main Dr. that you would see? I am trying to find the best DAN/ Environmental/ Intergrative Dr. in the US for tics?

[Chemar]

also take a look at the Latitudes/ACN advisory board doctors

 

http://www.latitudes.org/brd_mem.html

[Dedee]

Airbucket,

 

I just wanted to reply quickly to a couple of things. One is congrats on getting your son off Abilify. Our peditrician initially put my son on Abilify when his tics began so violently. He stayed on it for about one month before I decided absolutely not. He was such a zombie he could barely stay awake through school. I stoped it and never looked back. Best thing I ever did. Second, you mentioned Dr. Murphy and I just wanted to let you know that we were so very happy that we sought her out at the Shands clinic in Gainsville. We had to travel from Tennessee but it was totally worth the trip. We were unable to find any help in our area for our sons PANDAS. Our peditrician was only willing to do what was recomended by a specialist. My sons symptoms are only relieved while on antibiotics. When we take him, off all tics, OCD, and anxiety symptoms immediately return. Dr. Murphy was like a God send to our family. She seemed to know him like a book. She recommended vitamins, supplements, and antibiotics. Although she did not give us the prescription for antibiotics (because we live out of state), she wrote a recommendation for plan of care and sent it to our pediatrician. That was enough for our doctor, and she has been treating our son accordingly. If we have any real issues in the future we can do a phone consult, or if it is a real big problem we will just take a couple days off work and take another road trip. It was so worth it. We had already wasted so much time and money on other neurologist and ID doctors who just blew us off and either didn't want to do anything or just wanted to medicate him to zombie land. Just wanted to let you know that we had a positive experience in case you decide to go that route. Good luck.

 

Dedee

[emma1]

Dedee, My daughter is like your child. On antibiotics, she is fine -- almost perfect. Off - well, night and day. I know you use the 2:1 fish oil (NSI) and the antibiotic (Pen V?) -- is there anything else you find helpful?

 

I am sorry if I've gotten your supplements/antiviotics wrong -- I have been searching the forum so much everyone/everything is getting all mixed up in my head!

[airbucket]

I will definitely check out Dr. Robbins. I am looking for the kind of doctor who will take the TIME to listen! Does Dr Murphy diagnose pandas? or do you need to do the testing of it before you see her?

 

i really appreciate your recommendations! thank you

[Chemar]

Hi airbucket

 

Dr Murphy tests, dx and treats PANDAS, in addition to also dx and treating TS and other pediatric neurological and psychiatric disorders

 

The blood for PANDAS evaluation is drawn there at Shands and tested there too and the results are then analysed and one goes for the follow up to discuss them and the recommended treatments

 

Tanya Murphy is one of the most knowledgable people around re PANDAS, OCD, tics and TS

She is also one of the nicest doctors I have ever met....very caring, and willing to give TIME to patients. She is also very open minded and informed re alternatives even tho she is a conventional doc

 

The Shands Clinic is associated with the University of Florida, Gainesville

 

here is more on Dr Murphy

 

http://mdc.mbi.ufl.edu/murphy.htm

 

http://www.psychiatry.ufl.edu/people/bios/murphy.htm

[Dedee]

Just jumping in to say that I whole heartadly agree with what Chemar said about Dr. Murphy. Even though she is a "traditional" doctor, she is so very open to treatments outside the traditional methods. This is not to say that she will not tell you if she thinks it will not be helpful, but she did suggest alternative supplements for us in addition to the antibiotics that other physicians would have blown off. As for time, we were literally there for hours. She was so relaxed and did not seem to have anything to do but talk to us and our son. It was such a great feeling. The entire staff is great. As Chemar said, any labs you need will be drawn there and best yet, she will do the interpretation, which she is trained to do and explain it all to you, which most physicians will not do. Honestly, if we lived close by, I would take my son in every few months whether he needed it or not :-).

 

Emma, I know what you mean about getting confused about everything. Yes my son does take a few other things. I give probiotics, and calcium / magnesium along with the fish oil, antibiotics and a multivitamin and that is all. Things seem to be pretty stable that way and I am not sure I can afford much more :-). Of course we would do whatever we have to or spend whatever we need but I tell you I am about to go broke keeping all five of us on fish oil. I think I going to have to start buying it by the case.

Hope things are going well for you.......

 

Dedee

[81lumberjack]

Dr Jeff Bradstreet is a top-notch DAN doc in Melbourne Florida. Cutting edge research, hands-on doc that has years of experience treating kids with a biomedical approach. www.icdrc.org

 

 

 

 

 

 

hello everyone -

having learned so much here i am now looking for a "DAN" doctor for my son in Florida. I am willing to travel to any part of Florida for a good one. Can anyone make an suggestions please? I got the list of DAN doctor off the autism ARI web site but it always helps to have a first hand recommendation. I am also looking into seeing Dr Murphy at U of F and also was looking into Dr Aronson-Ramos - her web site is impressive, does anyone have any experience with her? She was on the DAN doc list, dont know how "alternative" she is in her choices of treatments.

 

ok thank you. Happy to say my son is off Abilify as of today! Hopefully that will be a good thing! Thank you.

[michele]

I agree if you live in Florida and can get into see Dr. Murphy as a patient she is the expert on tics and PANDAS. She has worked with Sweedo at the NIMH and has all the latest treatment information. We went from Ohio. I wish I could go back or use her as our Dr. She gave us a list of suggestions for treatment to show Dr.'s back in Ohio. All I can say is the Dr.'s listened to her in regards to treatment. Her word is big because she does the research on it. We only used the lab for throat swabs but she did look over the labs I brought. One of the most important things I gained from her is if symptoms increase get a stronger antibiotic for them for three weeks and everyone's throats swabbed in the house and treat the carrier. Also to get OT early on for gross motor delays. She is the only Dr. that told me that. Also don't take any risks with meds that could give long term damage. I only wish she had suggested Azith because I can't get Dr's here to prescribe it. She really listened to us and spent alot of time discussing PANDAS symptoms.

 

I have liked the DAN Dr. and he really looks at the individual case and interprets the blood work and what supplements they are lacking but he is very expensive and alot is not covered with insurance. There is a fee for any phone consults. Plus I wonder how do you go back to the neurologist and explain the alternative route you have been taking with a DAN Dr. I will find out tomorrow when we see ours for the first time in five months. I wonder what he will think of it?

 

Michele

Just jumping in to say that I whole heartadly agree with what Chemar said about Dr. Murphy. Even though she is a "traditional" doctor, she is so very open to treatments outside the traditional methods. This is not to say that she will not tell you if she thinks it will not be helpful, but she did suggest alternative supplements for us in addition to the antibiotics that other physicians would have blown off. As for time, we were literally there for hours. She was so relaxed and did not seem to have anything to do but talk to us and our son. It was such a great feeling. The entire staff is great. As Chemar said, any labs you need will be drawn there and best yet, she will do the interpretation, which she is trained to do and explain it all to you, which most physicians will not do. Honestly, if we lived close by, I would take my son in every few months whether he needed it or not :-).

 

Emma, I know what you mean about getting confused about everything. Yes my son does take a few other things. I give probiotics, and calcium / magnesium along with the fish oil, antibiotics and a multivitamin and that is all. Things seem to be pretty stable that way and I am not sure I can afford much more :-). Of course we would do whatever we have to or spend whatever we need but I tell you I am about to go broke keeping all five of us on fish oil. I think I going to have to start buying it by the case.

Hope things are going well for you.......

 

Dedee

[Andy]

Did you find a DAN doctor in South Florida and if so are you happy with your choice?

I have personal experience with a few so willing to compare notes.