melanie Posted March 2, 2009 Report Share Posted March 2, 2009 I need an MD that will help with symptoms in NJ any suggestions Link to comment Share on other sites More sharing options...
EAMom Posted March 2, 2009 Report Share Posted March 2, 2009 I need an MD that will help with symptoms in NJ any suggestions Hi Melanie, I would try Rosario Trifiletti (a pediatric neurologist) for help with PANDAS (or tics). I think this is current information: http://ceii.atlantichealth.org/provider/co...p;person_id=165. He used to be at UMDNJ Medical School. http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm I would consider him to be a PANDAS expert. He was one of the authors on an excellent PANDAS review article (unfortunately, I can't find a free copy of the full-text online) http://jcn.sagepub.com/cgi/content/abstract/21/9/727 This post from Jacki (last year) was quite favorable http://www.latitudes.org/forums/index.php?...art=#entry19936 as was this post from Alyssa http://www.latitudes.org/forums/index.php?...art=#entry27087. I don't know if anyone else has seen him? Good luck! Link to comment Share on other sites More sharing options...
Debbie1 Posted March 2, 2009 Report Share Posted March 2, 2009 We live in NJ and having been using Dr. Claudia Chiroboga (pediatric neurology) at Columbia University in NYC. We have been using her since October 2008 and so far we've seen wonderful results. My pediatrician is impressed with her as well and since our initial visit to her, has sent other patients to her. If you would like further information, please let me know. Link to comment Share on other sites More sharing options...
melanie Posted March 2, 2009 Author Report Share Posted March 2, 2009 We live in NJ and having been using Dr. Claudia Chiroboga (pediatric neurology) at Columbia University in NYC. We have been using her since October 2008 and so far we've seen wonderful results. My pediatrician is impressed with her as well and since our initial visit to her, has sent other patients to her. If you would like further information, please let me know. Dr Triffoletti didnt work out well We did use him but found him diffucult (very,very) to contact he prescribed meds and when it was time to contact him we couldnt Im not sure if it was a bad time for him but Honestly I wouldnt go back blood work was lost It was a disaster I had to wean him off meds by myself Not good I need help now I dont know why help is so hard to find I am tring to get help from chop It seems the wait is so lenghty how can this be I dont understand My child cant go to school cant really go anywhere He is on tenex 3mgs thats seems to be the only med that he can tolarate this stinks so bad I will contact columbia thanks Link to comment Share on other sites More sharing options...
melanie Posted March 2, 2009 Author Report Share Posted March 2, 2009 We live in NJ and having been using Dr. Claudia Chiroboga (pediatric neurology) at Columbia University in NYC. We have been using her since October 2008 and so far we've seen wonderful results. My pediatrician is impressed with her as well and since our initial visit to her, has sent other patients to her. If you would like further information, please let me know. Dr Triffoletti didnt work out well We did use him but found him diffucult (very,very) to contact he prescribed meds and when it was time to contact him we couldnt Im not sure if it was a bad time for him but Honestly I wouldnt go back blood work was lost It was a disaster I had to wean him off meds by myself Not good I need help now I dont know why help is so hard to find I am tring to get help from chop It seems the wait is so lenghty how can this be I dont understand My child cant go to school cant really go anywhere He is on tenex 3mgs thats seems to be the only med that he can tolarate this stinks so bad I will contact columbia thanks Debbie can I ask what your child is taking that is so helpfull what are his/her symptoms Link to comment Share on other sites More sharing options...
EAMom Posted March 2, 2009 Report Share Posted March 2, 2009 Wow...that is good to know about Trifiletti. I wonder what was going on. I think the lost blood may be more a hospital/lab issue. But, that is not good to have a doc that is hard to contact. Link to comment Share on other sites More sharing options...
michele Posted March 2, 2009 Report Share Posted March 2, 2009 Debbie, I was also wondering how the Dr. at Columbia was treating your son's condition that he was responding so well. I am so happy to hear you are seeing improvements. It is always great to hear a success story! My fingers are crossed for my son. We just started 10 mg Strattera Sat. along with Abilify 10 mg and 300 mg antibiotics. My son seemed better yesterday but it may be too soon to tell. It takes about three weeks for Strattera to work to full effects. He did seem more calm Sun. and more loving. After we tried the last two stimulants with negative results I was a bit scared to give it another go around. I pray we find something that works. Thanks, Michele We live in NJ and having been using Dr. Claudia Chiroboga (pediatric neurology) at Columbia University in NYC. We have been using her since October 2008 and so far we've seen wonderful results. My pediatrician is impressed with her as well and since our initial visit to her, has sent other patients to her. If you would like further information, please let me know. Dr Triffoletti didnt work out well We did use him but found him diffucult (very,very) to contact he prescribed meds and when it was time to contact him we couldnt Im not sure if it was a bad time for him but Honestly I wouldnt go back blood work was lost It was a disaster I had to wean him off meds by myself Not good I need help now I dont know why help is so hard to find I am tring to get help from chop It seems the wait is so lenghty how can this be I dont understand My child cant go to school cant really go anywhere He is on tenex 3mgs thats seems to be the only med that he can tolarate this stinks so bad I will contact columbia thanks Debbie can I ask what your child is taking that is so helpfull what are his/her symptoms Link to comment Share on other sites More sharing options...
Debbie1 Posted March 3, 2009 Report Share Posted March 3, 2009 Melanie, She put my son on prophylactic amoxicillin after hearing his history of recurrent strep infections and his blood work came back with extremely elevated titers (AntiDnase B of 2700, ASO of 620). At the time he was having terrible tics and some OCD behaviors. We had seen another nuerologist for two years prior to switching to Dr. Chiriboga. He had put my son on Klonopin and Zoloft, but never checked for any link to strep. She would like to wean him off of Klonopin and Zoloft this summer if he continues to do well. We can then tell if there is any underlying disorder or whether strep is the sole trigger for him. We took him off of wheat, milk, garlic and artificial ingredients for a period of time. He is now back on wheat, milk and garlic, although I will not yet try adding back the artificial stuff. They will do steroid bursts and IVIG in extreme cases at Columbia when all other treatments have failed. She did a steriod burst succsessfully with another one of my children who was experiencing tics after exposure to strep. A round of antibiotics that had worked in the past did not work this time to alleviate her symptoms. She is now on prophylactic amoxicillin as well and is doing very well. My kids were deemed to mild at this point to consider IVIG. As for neurologists being hard to reach, I have had that problem in the past. I have to give credit to Dr. Chiriboga who not only has returned my phone calls, but called on her own to check up on my daughter during her steriod treatment. If I can be of further help, please let me know. Debbie Link to comment Share on other sites More sharing options...
Debbie1 Posted March 3, 2009 Report Share Posted March 3, 2009 Michele, I think I answered your questions in my reply to Melanie. I hope you are seeing some improvement in your son. If you have further questions for me, please let me know. Thanks, Debbie Link to comment Share on other sites More sharing options...
michele Posted March 3, 2009 Report Share Posted March 3, 2009 So has the Klonopin and zoloft helped with the tics and ocd? How is his moods/ behaviors does he show wigns of ADHD? Did your daughter needs meds to help with her symptoms after the steroid burst? We are trying to find meds for the ADHD. It is great you have had success with your Dr. Anyone know of a Dr. in Ohio? I know D. Gilbert did research on PANDAS and tourettes. He is in Cincinnati and that is about 6 hrs away. We are closer to Cleveland then Cinnci. Michele Melanie, She put my son on prophylactic amoxicillin after hearing his history of recurrent strep infections and his blood work came back with extremely elevated titers (AntiDnase B of 2700, ASO of 620). At the time he was having terrible tics and some OCD behaviors. We had seen another nuerologist for two years prior to switching to Dr. Chiriboga. He had put my son on Klonopin and Zoloft, but never checked for any link to strep. She would like to wean him off of Klonopin and Zoloft this summer if he continues to do well. We can then tell if there is any underlying disorder or whether strep is the sole trigger for him. We took him off of wheat, milk, garlic and artificial ingredients for a period of time. He is now back on wheat, milk and garlic, although I will not yet try adding back the artificial stuff. They will do steroid bursts and IVIG in extreme cases at Columbia when all other treatments have failed. She did a steriod burst succsessfully with another one of my children who was experiencing tics after exposure to strep. A round of antibiotics that had worked in the past did not work this time to alleviate her symptoms. She is now on prophylactic amoxicillin as well and is doing very well. My kids were deemed to mild at this point to consider IVIG. As for neurologists being hard to reach, I have had that problem in the past. I have to give credit to Dr. Chiriboga who not only has returned my phone calls, but called on her own to check up on my daughter during her steriod treatment. If I can be of further help, please let me know. Debbie Link to comment Share on other sites More sharing options...
melanie Posted March 3, 2009 Author Report Share Posted March 3, 2009 Do you have a # for Dr. Claudia Chiroboga I couldnt find any info on her I feel so hopeless he is getting worse I am considering a hyperbaric chamber have you heard anything about them? Link to comment Share on other sites More sharing options...
Debbie1 Posted March 4, 2009 Report Share Posted March 4, 2009 So has the Klonopin and zoloft helped with the tics and ocd? How is his moods/ behaviors does he show wigns of ADHD? Did your daughter needs meds to help with her symptoms after the steroid burst? We are trying to find meds for the ADHD. Michele, In retrospect, we are not sure whether the Klonopin and Zoloft have helped. During the times that he showed no symptoms, it is possible that he would not have had symptoms even without the meds. During times of exacerbation, he has had an extremely hard time even while on them. In hindsight he did have exacerbations when exposed or diagnosed with strep. He does not show signs of ADHD, although Dr. Chiriboga did send out surveys to his teachers to be thorough. He has experienced side effects with both meds which is one of the things that led me to this website last year. The Zoloft gave him headches for the first several weeks and the Klonopin makes him more impulsive than he was before. At higher doses he became hyper and had a hard time falling asleep at night. My daughter only takes the antibiotic. She is not on any other meds to treat the tics. She has no OCD or ADHD. I hope this helps. Debbie Link to comment Share on other sites More sharing options...
Debbie1 Posted March 4, 2009 Report Share Posted March 4, 2009 There are two numbers listed for her: 212-305-8549 / 212-305-6833. I googled her name to get these numbers - I thought it would be faster than finding my file right now. If neither are correct, let me know and I will pull my file. She is interim director of pediatric nerology at Columbia. She does not take my insurance. We pay out of pocket, but she may take other insurance, I am not quite sure. If it is an issue, you may want to see if you can see another doctor on the team. Good luck. Keep us posted. Thanks, Debbie Link to comment Share on other sites More sharing options...
melanie Posted March 5, 2009 Author Report Share Posted March 5, 2009 There are two numbers listed for her: 212-305-8549 / 212-305-6833. I googled her name to get these numbers - I thought it would be faster than finding my file right now. If neither are correct, let me know and I will pull my file. She is interim director of pediatric nerology at Columbia. She does not take my insurance. We pay out of pocket, but she may take other insurance, I am not quite sure. If it is an issue, you may want to see if you can see another doctor on the team. Good luck. Keep us posted. Thanks, Debbie [/quo I called them today They are tring to get him in next week Thanks Its so hard to get appointments I guess when its 600.00 no insurance its easier Im sur I met my out of pocket allready I am so stressed I feel so bad for him He is also on zithro 30 days I am going to rent the hyperbaric chamber next week for a month and I hope something works this is just awfull His psy wants to try buspar has anyone tried that Link to comment Share on other sites More sharing options...
Mustang Carole Posted March 5, 2009 Report Share Posted March 5, 2009 Melanie, You'v got mail. Carole Link to comment Share on other sites More sharing options...
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