Stephanie2 Posted October 22, 2009 Report Posted October 22, 2009 As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie
lss Posted October 22, 2009 Report Posted October 22, 2009 As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie Tanya Murphy 727-767-8230 She is the director of the Rotheman Center of Neuropsychiatry St. Petersburg, Fl.
Suzan Posted October 22, 2009 Report Posted October 22, 2009 http://www.wholisticpeds.com/ I don't know if Dr. B prescribes antibiotics but he is familiar with PANDAS and Dr. Swedo and I have sent him Dr. Cunningham's papers. You might call to see if he recommends anyone in the area or if he would be able to help. He is a Dan! doc and I highly recommend him in general. I'm sorry, I am not familar with the other doc you mention but I am not from FL. Susan
lss Posted October 22, 2009 Report Posted October 22, 2009 As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie Did you try Dr. Epstein at the Dan Marino Medical Center in Weston. I think I also gave you my old Peds Dr. in Boca, Dr. Suzanne Laskes, she was always willing to give our son antibiotics, before Pandas dx. Also Dr. Bradstreet in Melbourne. Linda
Megs_Mom Posted October 22, 2009 Report Posted October 22, 2009 As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie We contacted her in July 09, and got a December appt 09, after waiting for about 2 months for a response. So we passed, but thanked her & would keep her on the list. We had to travel by plane to see her - so we could not go on a waiting list, so perhaps you could get sooner if you are local. For us, the wait was just way too long. I hear very good things about her. Good luck!
thereishope Posted October 22, 2009 Report Posted October 22, 2009 Michele has seen her. She is the one who diagnosed her son, but ran into problems about treatment over state lines. Hopefully, Michele will check this and post more of her visit. If she doesn't, you can try sending her a pm.
Stephanie2 Posted October 23, 2009 Author Report Posted October 23, 2009 Linda, Thanks, no I did not contact those docs. I forgot that you told me about them b/c I had my mind on Latimer... Anyway, Dr. Murphy got me in for Nov. 4 b/c she felt our situation was severe so she fit us in...I guess I got lucky! Stephanie As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie Did you try Dr. Epstein at the Dan Marino Medical Center in Weston. I think I also gave you my old Peds Dr. in Boca, Dr. Suzanne Laskes, she was always willing to give our son antibiotics, before Pandas dx. Also Dr. Bradstreet in Melbourne. Linda
Stephanie2 Posted October 23, 2009 Author Report Posted October 23, 2009 Actually, I love this website you passed along (I think you passed it along in another thread a couple weeks ago)? I am familiar with him, but we are in the process of getting established with the Bradstreet group (also DAN) in Melbourne. I have been using this website when the kids get sick (the protocol he has for "first signs of illness") and I really think it has helped with this last round of cold virus we got hit with. Stephanie http://www.wholisticpeds.com/ I don't know if Dr. B prescribes antibiotics but he is familiar with PANDAS and Dr. Swedo and I have sent him Dr. Cunningham's papers. You might call to see if he recommends anyone in the area or if he would be able to help. He is a Dan! doc and I highly recommend him in general. I'm sorry, I am not familar with the other doc you mention but I am not from FL. Susan
Suzan Posted October 23, 2009 Report Posted October 23, 2009 Actually, I love this website you passed along (I think you passed it along in another thread a couple weeks ago)? I am familiar with him, but we are in the process of getting established with the Bradstreet group (also DAN) in Melbourne. I have been using this website when the kids get sick (the protocol he has for "first signs of illness") and I really think it has helped with this last round of cold virus we got hit with. Stephanie I'm so glad! I agree that it is a great protocol and I think it has helped us a lot too. Sorry I'm a broken record with his website
Stephanie2 Posted October 23, 2009 Author Report Posted October 23, 2009 Well, I had some luck today with Dr. Murphy's office. I spoke to the receptionist and she asked me lots of questions about who dx'd my son, what treatments have worked, what his pandas symptoms are, etc... She said that they were now booking for Jan, but since my son sounds kind of extreme she said she was going to speak to Dr. Murphy. A few hours later, she called back and said that Dr. Murphy wants to get us in soon, so they gave me an appt for Nov. 4, only 10 days away! After all the roadblocks I have run into in the past couple months, it was nice to have a door open up for me!! So excited! Meg's mom, I can't believe that there was a 5 month wait for you! Maybe something about our situation got us in sooner (the more severe symptoms, rages, etc...). Stephanie As some of you know I have hit a roadblock with Latimer and I am scrambling to get some backup appts scheduled. I am in Florida, so the next logical thing for me to do is try Dr. Murphy. Has anyone seen her and what was your experience/treatment plan? Does anyone have her contact info? Stephanie
ShannonOtown Posted October 23, 2009 Report Posted October 23, 2009 Hi Stephanie, I was down at All Children's in St Pete yesterday w/ my son (11 yrs) at a follow-up with Dr. Murphy, so I'm just getting back on the forum today. We have been on a study with her team since July. We feel very fortunate to be with her. We are working with an immunoloigist in the same center and they can work together on results.... very good experience. Please feel free to ask me any questions. Where are you in Florida? We drive from Orlando. Shannon
Chemar Posted October 23, 2009 Report Posted October 23, 2009 my son was a patient of Dr Murphy in 2000-2001 when she was still at Shands Clinic in Gainesville Florida I took him to see her becasue of the dramatic onset of his tics and OCD etc around his 10th birthday I liked her very much, but do sometimes wonder if she was too quick to rule out a PANDAS dx based on his history (no known strep) and blood work. Once she had determined he was not PANDAS, all we were offered was more antipsychotic medications for his then intense TS/OCD my son actually bonded well with one of her psychiatric interns at the time, who we continued seeing (quite a drive from n Orlando area) as he really helped my son with CBT and coping skills, and was the one who helped us wean him off the drugs when we started the natural treatment protocol I know Dr Murphy was at the forefront of PANDAS research at the time, and so imagine she has stayed in tune.
faith Posted October 23, 2009 Report Posted October 23, 2009 cheri, once you weaned off the meds and then started treatments, I know that your son did improve dramatically from there, but if you can recall, did he ever have any real "backslide" or an episode of waxing that makes you wonder if they were illness induced? Since you are kind of stating your own feeling and belief about wondering re the PANDAS and Dr. Murphy, I must admit, I have wondered about your son's case in my mind a few times, for the more I am learning, he certainly seems to fit the profile. altho yes, I do know your husband is TS, so there is the genetic component there as well. Of course, your son is 20 now, so back then it was all just beginning to be researched and there was not alot known probably outside of Swedo et al., I'm surprised you even found that avenue in the first place. As you can see, I have kind of jumped lifeboats the past few weeks and am learning as much as I can over here. Things are not really going too well still for my son, so with some help and guidance from some great parents on this side of the forum, I'm going to follow my gut and see where it leads. ...... Faith
Chemar Posted October 23, 2009 Report Posted October 23, 2009 Hi faith yes we have had flares that have made me wonder, including the current one I have documented on TS forum a few times we even did throat culture no sign of strep however, being as he has Crohn's which some feel is caused by microbes (mycoplasma) and that he did test +ve for epstein barr, tho no history of mono...I guess he is more PITANDS than PANDAS but there is clearly the genetic component as well, plus the fact that he doesnt require antibiotics to improve from the mysterious waxings that have come and gone quickly over the approx 10 years we have been dealing with this
EAMom Posted October 23, 2009 Report Posted October 23, 2009 Hey Chemar....it sure would be interesting to send your son's serum to Dr. Cunningham, to see if he falls in the "tics" range (vs. the "pandas" range).
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