KaraM Posted February 12, 2012 Report Posted February 12, 2012 Hi, We will be having another PANDAS/PITAND/PANS support group meeting on Saturday, March 10th from 1:30 - 3:00. Please let me know if you would like me to send you additional info on location. Kara
bulldog24 Posted February 12, 2012 Report Posted February 12, 2012 I would REALLY like to attend. Maybe 2 of us.
minimaxwell Posted February 14, 2012 Report Posted February 14, 2012 Hi, I am new here and was wondering if you might be able to help me. We are also in Ma, I am looking for lVlG treatment, any suggestions? thanks,tiffani
colleendonny Posted February 14, 2012 Report Posted February 14, 2012 Hi Kara, I might be able to go. I usually work on Saturdays so it may be tough because I'm not very close to Salem. I'll PM you or send you an e-mail for the info. Thanks
KaraM Posted February 14, 2012 Author Report Posted February 14, 2012 Hi Tiffany, We have not gone the IVIG route personally. The people I know from around here that have doe it have used Dr. Bouboulis in CT. I believe one family also used Dr. Fuhlbrigge, but he just administered the IVIG...I think it was ordered by Dr. B or another PANDAS doc. I'm not positive about that arrangement so would have to confirm. Hi, I am new here and was wondering if you might be able to help me. We are also in Ma, I am looking for lVlG treatment, any suggestions? thanks,tiffani
minimaxwell Posted February 15, 2012 Report Posted February 15, 2012 Hi Tiffany, We have not gone the IVIG route personally. The people I know from around here that have doe it have used Dr. Bouboulis in CT. I believe one family also used Dr. Fuhlbrigge, but he just administered the IVIG...I think it was ordered by Dr. B or another PANDAS doc. I'm not positive about that arrangement so would have to confirm. Hi, I am new here and was wondering if you might be able to help me. We are also in Ma, I am looking for lVlG treatment, any suggestions? thanks,tiffani Thanks Kara, We have seen Dr. T and Dr.k who both recommend lVlG. Fulhbrigge office told me that he is no longer seeing PANDAS patients when I asked why I was told he used to believe in PANDAS but does not anymore!! I am now looking for a Dr. to administer it in Boston. I could go out of town but prefer to do it in Boston. Not only for my daughter but for the future kids who will need this.
minimaxwell Posted February 29, 2012 Report Posted February 29, 2012 Hi, We will be having another PANDAS/PITAND/PANS support group meeting on Saturday, March 10th from 1:30 - 3:00. Please let me know if you would like me to send you additional info on location. Kara Can you please send me the info on the support group? thanks,tiffani
thenmama Posted March 1, 2012 Report Posted March 1, 2012 Hi KaraM-- I was trying to PM you about something else-- google turned up and old post of yours about high HIb titers and I wanted to ask if you'd ever learned more about that-- but your mailbox must be full. Sorry to hijack this thread! TH
KaraM Posted March 1, 2012 Author Report Posted March 1, 2012 (edited) Minimaxwell, I PM'd you the location info. HOpe to see you there. Kara Edited March 1, 2012 by KaraM
KaraM Posted March 1, 2012 Author Report Posted March 1, 2012 TH... I couldn't find the post you were referring to and I honesty can't remember looking into that...which tells me I didn't find out anything more. can you point me to the post? That may help trigger my failing memory. I cleaned out my mailbox a bit. Thanks for letting me know. Hi KaraM-- I was trying to PM you about something else-- google turned up and old post of yours about high HIb titers and I wanted to ask if you'd ever learned more about that-- but your mailbox must be full. Sorry to hijack this thread! TH
KaraM Posted March 3, 2012 Author Report Posted March 3, 2012 Bumping as reminder...meeting one week from today.
colleendonny Posted March 3, 2012 Report Posted March 3, 2012 Bumping as reminder...meeting one week from today. Kara- I might be able to go! If my husband isnt't working that day I will be there. Could you send me the info?
KaraM Posted March 9, 2012 Author Report Posted March 9, 2012 Bumping one last time. If you asked for location and I didn't respond, please let me know. I think I responded to all, but am not sure.
fightingmom Posted March 16, 2012 Report Posted March 16, 2012 Hi! I'm new here, but have been lurking for many months. We are newly diagnosed and live in RI. Would love more information about a support group in MA. If there is another meeting being planned, please PM me or let me know where I can find info. - thanks so much!
KaraM Posted March 16, 2012 Author Report Posted March 16, 2012 (edited) Hi, We will probably meet in another 6 - 8 weeks, but don't have a date set yet. There is a group that meets in Hanover....I think MADBAY coorinates it. Here is a link to her post (scroll to the bottom) that tells you when and where. If they are sticking to that schedule, then there may be a meeting coming up Monday.... http://www.latitudes.org/forums/index.php?showtopic=16438 Here is a link to PANDAS Resource Network's support group page. It looks like there is also a group in Framingham. If you contact PRN, I'm sure they can get you connected with the organizers. http://pandasresourc...ort-groups.html I hope this helps. ara Edited March 16, 2012 by KaraM
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