LNN Posted September 16, 2009 Report Share Posted September 16, 2009 Two weeks ago, I spoke with a mom whose daughter was the last of the 50 in Swedo's original study. If you pm me your email, I'll forward to her and ask her to contact you directly. The day I spoke with her, her 18 yo daughter had gotten a plane to spend a year living abroad. She too had recovered very well and is now living a full and healthy life. Her daughter had PEX. Had a very rough recovery, but did recover without any long lasting issues. Link to comment Share on other sites More sharing options...
T_Mom Posted September 16, 2009 Report Share Posted September 16, 2009 Dear MarknLA-- I can't tell you how much it means to read your post--We do ALL thank you-- Oh, that we might hear from other Swedo originals here...Anyone out there lurking? Please post! Perhaps it could be one of the "important info." threads at the top of the page. OK, one question: Dr. Susan Perlmutter told me that they had found anti-inflammatory effects of Amoxicillan in research at NIH. Can you give us more details about your experiences. If Susan Perlmutter treated your daughter, but only with antibiotics-- was your daughter on "full strength" and which antibiotic, and for how long? (My d. has been on full-strength now for 9 months--still not 100%, but close.) Thanks- Link to comment Share on other sites More sharing options...
marknla Posted September 16, 2009 Author Report Share Posted September 16, 2009 I just remembered something at NIH during a scan of her brain ( dont remember what kind) they seen a very deep sinus infection that they considered to one of the reasons for her not responding to a regular 10 day course of antibiotics for strep. I remember them telling me strep could hide there and continue to cause her neuro symptoms. It was so far up in her sinuses it look to me as if it was up in her brain. THATS when they put her on Biaxin for like 15 or 20 days. Thats when she got significantly better. I havnt heard a vocal or seen anything since she was around 16. .My daughter was on antibiotics for close to two years. She stopped around ten. I tried to never miss a dose. If she became sick I immediately had her tested for strep and treated with stronger antibiotics. They used Biaxin (Sp?)alot for her treatment. Im sorry if I am not so well informed on the newer antibiotics and probiotics. After reading many of your posts I was right there with all of you mentally and emotionally to the place you are now. I even had to call my daughter today and check in to make sure she was ok. She asked for more money ! Is that a tic? ... Kidding aside...I know how fragile this recovery can be. But I tell you all this, if Pandas does rear its head again back into my daughters life, this time around because of this forum I wouldnt have to do it alone and that makes me little less afraid. I cried too when I read all of your posts, you are all me back then. I can identify with every single one of you. Also, Thank you so much for your offers of getting me in contact with those other NIMH childrens parents. I would be so happy to speak with them. Being at NIMH was a very eyeopening experience for me. I learn alot in the short time there. Sf mom - She was on it for two years straight stopped around ten. We considered having her tonsils removed before going to the study. I asked the doctors at NIMH if we should. I believe they said at that time there was no conclusive evidence that would help. I would have opted for the surgery but I was afraid things could have gotten worse. I didnt want to rock the boat after we came back because she was better. Link to comment Share on other sites More sharing options...
T_Mom Posted September 16, 2009 Report Share Posted September 16, 2009 Thank you again MarknLA, You said: "THATS when they put her on Biaxin for like 15 or 20 days. Thats when she got significantly better.... My daughter was on antibiotics for close to two years. She stopped around ten. I tried to never miss a dose. If she became sick I immediately had her tested for strep and treated with stronger antibiotics. They used Biaxin (Sp?)alot for her treatment. Im sorry if I am not so well informed on the newer antibiotics and probiotics." YOU are wonderful for sharing this with us-- May I ask, when your daughter was on antibiotics for "two years" was it full-strength or a half-dosage? It would really help us to know-- Also, was it Biaxin? Thank you again, TMom ps--my d also had a sinus infection show up on her MRI when this all started... Link to comment Share on other sites More sharing options...
marknla Posted September 16, 2009 Author Report Share Posted September 16, 2009 Dear T.Mom I dont recall amoxicillin. They sent me home with a big bottle of PenV (sp?) after her course of Biaxin she started on the penV. 2X a day I think it was 250 mgs. Link to comment Share on other sites More sharing options...
marknla Posted September 16, 2009 Author Report Share Posted September 16, 2009 Your so welcome, I dont know if that was a half dose or full. After we returned my daughter continued treatment with her pediatrician who consulted with the doctors at NIH. I spoke with them often. They sent the paper/study to me when it was finished. I will always be indebted to them. Link to comment Share on other sites More sharing options...
Kayanne Posted July 31, 2010 Report Share Posted July 31, 2010 I decided to bump this thread up because it is so wonderfully hopeful, and there are so many new people on the forum. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted July 31, 2010 Report Share Posted July 31, 2010 Great story, God Bless and we hope you daughter has a super upcoming year at college. Link to comment Share on other sites More sharing options...
Mary M Posted July 31, 2010 Report Share Posted July 31, 2010 It would be invaluable for all of us...those in the first study as well as those of us muddling through this currently, to have the NIH look at some longitudinal data on the first 50 children and their families and compare that information to what is happening currently. Thank you for sharing your story, giving us all hope. I'm sorry that reading our current posts have stirred so many difficult emotions within you, but the information you have provided is a true blessing to us all. Mary from Michigan Link to comment Share on other sites More sharing options...
Doug Posted July 31, 2010 Report Share Posted July 31, 2010 WOW WOW WOW Thank you so much Link to comment Share on other sites More sharing options...
Fixit Posted August 1, 2010 Report Share Posted August 1, 2010 I dont know if you are reading this...but quickly.... just before may trip...mentioned not wanting to be around a sick kid...i said ...i don't know if you've ever heard of it but my kid has pandas.... she said ...MINE TOO!!!!!! all this time wondering alone(other than you guys) i found another family to be quick...her youngest if freind of my middle... her 2 older kids have it..one ocd-girl....one tics-boy she was supposed to be in the study...not sure if/why she didn't...but she went to nih to meet....but maybe because she lives in ga both are doing great...the daughter did just have an anxiety attac...but i think she is ok...both are in HS... pm me i will try to connect you makes me wonder why 10 years ago there was more of an open mind and then a couple of years later it all shut down???? Link to comment Share on other sites More sharing options...
mama2alex Posted August 1, 2010 Report Share Posted August 1, 2010 Hi, Thanks for posting this! Very encouraging!! Go to www.pandasnetwork.org and send an email to Diana Polman (it's her site). She can probably connect you with some parents. Link to comment Share on other sites More sharing options...
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