minimaxwell Posted March 20, 2012 Author Report Posted March 20, 2012 lol, no we did it w/ Dr. K. If we need to do it again I will do it w/ Dr. Walter.
fightingmom Posted March 20, 2012 Report Posted March 20, 2012 Ok! I got confused -- and excited! Lol the IVIG went well though?
minimaxwell Posted March 20, 2012 Author Report Posted March 20, 2012 Yes, it went well. She had it Thurs. and Fri. Dr. K gave her medicine like prednisone in her lV on Thurs. so she wouldn't get a headache. We flew home Sat. night and Sunday she woke with a raging headache and thought she was going to throw up. Vomit phobia is what consumes her life! She did not vomit,we gave prednisone and Motrin. She fell back to sleep and my husband and I anticipated a horrible ocd filled day when she woke up. Surprisingly she was fine when she woke up, nervous but not out of her mind like usual. We are seeing small shifts, crossing our fingers. Ok! I got confused -- and excited! Lol the IVIG went well though?
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 (edited) Double post...sorry Edited March 20, 2012 by colleendonny
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 (edited) Repeat Edited March 20, 2012 by colleendonny
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Wow, my phone is crazy Anyway, sounds like IVIG went pretty well. I'm hoping for continuing improvement for your DD. Is Dr. K your PANDAS doc, or do you see somebody nearby?
minimaxwell Posted March 20, 2012 Author Report Posted March 20, 2012 We have seen many Docs. I trust Dr. T the most. i feel like he understands the "science" more than anyone else. He also disagrees with most of the docs who only treat w/Augmentin post lvlg. He prefers an abx cocktail depending what your bloodwork shows and what you are fighting. Our other docs are Dr. Geller, Dr. Jenike and now Dr. Walter. Wow, my phone is crazy Anyway, sounds like IVIG went pretty well. I'm hoping for continuing improvement for your DD. Is Dr. K your PANDAS doc, or do you see somebody nearby?
tpotter Posted March 20, 2012 Report Posted March 20, 2012 Hello, Noticed you were from MA. Us too I have not heard of her but I can feel your frusteration with CHB. I do see a neuroligist at CH Waltham who could be some help.... I think he goes by the strict PANDAS guidelines though. Has to be strep infection. PM me if you would like his name. He may be of some help. Is your IVIG scheduled for 3/1 or are you just meeting this doctor? Did you give him the new guidelines that state very clearly that it's now PANS?
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 I have talked to Dr. Jenike and Dr. Gellar both through email. They seem great and caring. If you don't mind me asking,.are they helping with the medical aspect or the psychological aspect? PM if you like. And if you don't want to share, then that's ok too
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Hello, Noticed you were from MA. Us too I have not heard of her but I can feel your frusteration with CHB. I do see a neuroligist at CH Waltham who could be some help.... I think he goes by the strict PANDAS guidelines though. Has to be strep infection. PM me if you would like his name. He may be of some help. Is your IVIG scheduled for 3/1 or are you just meeting this doctor? Did you give him the new guidelines that state very clearly that it's now PANS? Yee, I did show him my sheets at our last appointment. He also wrote on his report that her abx that she had been on for 2 months is significant enough for her suspicious Lyme and her ehrlichiosis. He was talking about IVIG at out first visit for possible treatments for PANDAS, not us specifically, but as soon as her blood tests and spinal fluid came back unremarkable, he decided it wasn't PANS. Her spinal fluid is now in a Children's study.
minimaxwell Posted March 20, 2012 Author Report Posted March 20, 2012 Are you by any Chance talking about Dr. Wolfe or Dr. Fulbrigge?? I am always open to sharing/helping. feel free to call me 508.667.0574- Tiffani
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Hi tiffani, Yes, talking about Dr. Wolff. While I think he is a great neurologist, he is just not the best for PANDAS. I would take my DD 8 months for a seizure episode that happened, but not for PANDAS like things for DD5. We still will see him in case we ever decide to try an SSRI, but right now, we are trying to avoid that.
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