browneyesmom Posted December 19, 2010 Report Share Posted December 19, 2010 I realize this has probably already been posted and I apologize for the likely duplicate post, but I am totally drained at this point and very hard to focus... don't know when today's nearly day long flare-up episode may become extreme again. Has anyone here worked with Dr. Elizabeth Latimer in Bethesda, MD? If so, I need to know if she is familiar enough and current enough on the research to treat my DD11 who was diagnosed about 2 years ago. From when I was on here more regularly a year or so ago, I seem to remember people had seen her... maybe EAMom? I don't remember who else... I am looking for a doctor who will be able to tell US what to do to help her get well, not one I have to bring up to speed on PANDAS myself. If we have to travel a bit to see one, so be it - we have to help her! Thank you! Link to comment Share on other sites More sharing options...
peglem Posted December 19, 2010 Report Share Posted December 19, 2010 Dr. Latimer stays current on PANDAS research. She is who Dr. Cunningham referred my pediatrician to when he called about the CamKII results. Link to comment Share on other sites More sharing options...
kimballot Posted December 19, 2010 Report Share Posted December 19, 2010 From what I read and hear, she is one of the best PANDAS doctors - and she is NOT my child's doctor, so that is a true endorsement. You would be fortunate to work with her. Best of luck and please keep us posted! Link to comment Share on other sites More sharing options...
cfamily Posted December 19, 2010 Report Share Posted December 19, 2010 My Husband & I tried to get an appointment this past Thursday because we are too in an acute recurrance with violent thoughts. (Hurting herself). Dr. L's office said she was not accepting new patients and put us on a waiting list. Dr. K returned my email within 2 Hours. My dd9 also has not had a bad recurrance since the initial episode in 07. Prayers to you. Link to comment Share on other sites More sharing options...
kimballot Posted December 19, 2010 Report Share Posted December 19, 2010 My Husband & I tried to get an appointment this past Thursday because we are too in an acute recurrance with violent thoughts. (Hurting herself). Dr. L's office said she was not accepting new patients and put us on a waiting list. Dr. K returned my email within 2 Hours. My dd9 also has not had a bad recurrance since the initial episode in 07. Prayers to you. If you are on the East Coast and Dr. L is not available you may want to try Dr. Bouboulis in Connecticut Link to comment Share on other sites More sharing options...
RNmom Posted December 19, 2010 Report Share Posted December 19, 2010 I agree, if you are not able to see Dr. Latimer then try Dr. Bouboulis in Connecticut. He will treat PANDAS and look for other infections that may be adding to the problem (ie: mycoplasma, EB virus, Lyme etc.) He is thorough and knowledgeable. If you are not able to see Dr. Bouboulis then try Debbie McCabe at NIHA (National Integrated Health Association). She is a PA and naturalopath (sp?). She successfully treated her own child for PANDAS before the illness was even named or talked about in the medical community. She has also treated her whole family for Lyme. She "gets it." She follows a lot of Dr. L's patients and Dr. L says that Debbie is very thorough. Hang in there and good luck. Link to comment Share on other sites More sharing options...
browneyesmom Posted December 19, 2010 Author Report Share Posted December 19, 2010 I am realizing more every day that I have really been out of the loop in not remaining on this forum! What does Lyme disease have to do with this condition? I must have missed the information about that. I already emailed Dr. Latimer, but will see if I can reach Dr. Bouboulis next. Thank you very much for your responses! Link to comment Share on other sites More sharing options...
thenmama Posted December 19, 2010 Report Share Posted December 19, 2010 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
KaraM Posted December 19, 2010 Report Share Posted December 19, 2010 I haven't gone to him, Dr. Trifiletti in NJ is another doc who is on top of PANDAS - and he does phone consults. http://www.site.neurokidsr.us/ We see Dr. B in CT - He's closes to us coming from MA. Link to comment Share on other sites More sharing options...
browneyesmom Posted December 19, 2010 Author Report Share Posted December 19, 2010 Thank you, thenmama! I did email Dr. L and we are not so far from her office either. I'm certainly open to her seeing both, if possible, at this point... and I also hope that the specialists will consult with our docs here to help get them up to speed on this condition... I'll do what I can, if they do not. Link to comment Share on other sites More sharing options...
ANRmom Posted August 1, 2011 Report Share Posted August 1, 2011 (edited) Who is Dr. K? I am looking for someone in Md/Northern VA to take my 5 year old to. thanks ANRmom My Husband & I tried to get an appointment this past Thursday because we are too in an acute recurrance with violent thoughts. (Hurting herself). Dr. L's office said she was not accepting new patients and put us on a waiting list. Dr. K returned my email within 2 Hours. My dd9 also has not had a bad recurrance since the initial episode in 07. Prayers to you. Edited August 26, 2011 by ANRmom Link to comment Share on other sites More sharing options...
thenmama Posted August 1, 2011 Report Share Posted August 1, 2011 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
worriedmama Posted April 8, 2018 Report Share Posted April 8, 2018 On 12/19/2010 at 6:34 AM, browneyesmom said: I am realizing more every day that I have really been out of the loop in not remaining on this forum! What does Lyme disease have to do with this condition? I must have missed the information about that. I already emailed Dr. Latimer, but will see if I can reach Dr. Bouboulis next. Thank you very much for your responses! Hi! I am so sorry to bother you but I'm desperately seeking help for my daughter who I believe is suffering with PANDAS. I saw where you mentioned having emailed Dr. Latimer. Do you have her e-mail address? I would love to be able to reach out to her. I am in Canada and our medical professionals seem to be very behind with respect to PANDAS research and it's been a nightmare watching my daughter suffer... I would sincerely appreciate this information. Thanks so much for your time!!! Link to comment Share on other sites More sharing options...
Newfie Posted June 16, 2018 Report Share Posted June 16, 2018 Hi worried mama, I am also living in Canada and I am looking for someone to treat my son.I did contact a Dr. In Ontario but she had a waiting list of 1-11/2 years which is crazy and isn’t putting anyone else on the waiting list.There is also a Dr. Ayla Wilson in B.C that treats a lot of pans/pandas kids . Just wondering if you have found anyone to treat your child yet?It’s so hard to believe that so many Canadian families have to travel to the states to get treatment. Link to comment Share on other sites More sharing options...
lulu4 Posted July 13, 2018 Report Share Posted July 13, 2018 WorriedMama and Newfie, I hope you both already received the information you needed to contact Dr. L., but in case you didn't. She moved her offices to Washington, D.C. a couple years ago and the contact info from the beginning of this thread in 2010 would be different. She was our doctor. She really helped us. Google her, and the information for Latimer Neurology Center should come up with her contact information Good luck Link to comment Share on other sites More sharing options...
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