airial95 Posted July 26, 2010 Report Posted July 26, 2010 From the Saving Sammy Facebook page - there's a support group starting, the first meeting is tomorrow night in Orlando: Contact Shelley Carmine Bowles 2nd Floor Conference Room 5728 Major Blvd Orlando, FL 32819 The first meeting is tomorrow at 7PM I'm over in Tampa, so I'm planning on shooting over there if I can. Was just curious if anyone else around here was planning on attending. I'd love to meet some of you in person!!
Stephanie2 Posted July 26, 2010 Report Posted July 26, 2010 I am also facilitating a pandas support group in florida. our first meeting is in vero beach, sat., aug. 7th at 1 pm. If you are not already on my email distribution list and would like to be added, PM me with your email address! I will not be attending the one in orlando, although I wish I could...
airial95 Posted July 26, 2010 Author Report Posted July 26, 2010 Stephanie, You and I have already been in contact about the Vero meeting, and I plan on trying to get there also. Have you decided on a location yet? I haven't heard...
MichaelTampa Posted July 26, 2010 Report Posted July 26, 2010 I will not be attending either of these. While I am open and a little interested to meet people, I just found out about tomorrow's when I read your post, and already have plans for tomorrow night. I have known about the Vero Beach one, but that is a bit far for me, coming from Tampa. I'm not the typical case with PANDAS kids, I'm the sick one here, with definite lyme and possible PANDAS, that maybe adds to the reluctance. Still, though, curious to meet others, but if it's too far, I have to pass. Hoping they are great meetups! Michael
airial95 Posted July 26, 2010 Author Report Posted July 26, 2010 The one in Orlando is supposed to meet the 4th Tuesday of the month. I'll post and let you know how it goes...
Stephanie2 Posted July 27, 2010 Report Posted July 27, 2010 No location yet, I will be sending out an email soon... Stephanie, You and I have already been in contact about the Vero meeting, and I plan on trying to get there also. Have you decided on a location yet? I haven't heard...
Stephanie2 Posted July 27, 2010 Report Posted July 27, 2010 By the way Michael, I understand that you are too far away, but are you also saying that you don't want to expose the group to lyme/strep? I don't think that lyme is contagious and also I doubt you have an active strep infection that is contagious. I will have to ask the group about these things b/c I know there is a mom who was hesitant to come b/c her strep titers were elevated and she did not want to give anyone strep. But that doesn't necessarily mean she has an active strep infection. I mean if we were to make sure that every one of us is in perfect health, then none of us would be able to get together!! LOL! Yes, I can see where we wouldn't necessarily want to sit across from someone who has an active strep throat infection!! Oh, I am thinking about doing the next meeting in Tampa as there seems to be a handful of pandas parents there. I have been in contact with Tanya Murphy and my cousin works at All Children's organizing events. I may try to get a meeting going at the hospital. If you want, PM me with your email address so I can keep you in the loop!
MichaelTampa Posted July 27, 2010 Report Posted July 27, 2010 airial--That's funny, the plans I already have for tonight is, I'm a member of a vegetarian dinner group that meets monthly for dinner ... on ... the fourth Tuesday of every month! Well, I don't attend all of them, so, still leaves room to attend the Orlando meetings sometimes. Stephanie--Wasn't referring to chance of infecting others, more, just, won't be able to provide much experience with what it's like to deal with a PANDAS child. But, still interested in meeting others. But what about the infecting others. I don't think lyme is a concern, but what about strep? Is it normally safe enough with no strep symptoms (cough, sneezing, stuffy nose, etc, etc, or whatever they are)? I'll PM you my email address. Michael
airial95 Posted July 27, 2010 Author Report Posted July 27, 2010 Michael, That's funny - the fourth Tuesday seems to be popular! I'll PM you after the meeting and tell you if it's worth it or not - something tells me your mothly dinners might be more fun And while you may not provide any insight on dealing with a PANDAS child, I for one would be facinated to hear a point of view from someone who is actually dealing with the condition. My PANDAS son is very young, and often I wish I knew what was going on in his little brain. I'm sure you'd have much to add to the discussion!
MichaelTampa Posted August 5, 2010 Report Posted August 5, 2010 Did anyone go to last month's 4th Tuesday PANDAS meeting in Orlando? If you did, curious how it went / what it was like. I am thinking about going this month. Michael
airial95 Posted August 5, 2010 Author Report Posted August 5, 2010 Yes, I did. I have to run to pick up the kids, but I'll get back on later and give you the full download!
airial95 Posted August 6, 2010 Author Report Posted August 6, 2010 Okay, this may take a while to post as the kids aren't quite in bed yet, and they like to play with my iPad whenever they see me on it, but here goes... There were 6 people there, the moderator, a couple, a woman with her mother , and myself, a total of 4 PANDAS kids represented, all boys. Before Shelley (the moderator) came in and joined us, the conversation was flowing already. Most of the hour was spent just introducing ourselves and sharing our stories and situations. Going in, I was a little unsure what to expect. Knowing Beth's sometimes limited views on diagnosis and treatments, i wasnt sure if there would be any judgements passed "you dont have elevated titers, you dont have PANDAS" sort of thin or what. Also, the moderator is actually a behavior therapist, so I wasn't sure if this was some sort of phishing expedition for clients or what. She immediately put me at ease there, she addressed that right off the bat that she was there only as a parent and had a son with PANDAS herself. The discussion was still going when Shelley interrupted us to read a statement from Beth about the agenda and format of the meeting. We were to spend the time sharing our stories but "no family was to spend more than 10 minutes speaking". To be honest, I have no problem with the idea of an agenda, but more as a backup if conversation needs a jump start. But I felt that limiting the discussion topics, and the "10 minute" dictate actually somewhat hindered the discussion - but that may have been just my impression. I plan on going again next month, and see how it goes. I may ask Shelley to send out the agendas ahead of time and depending on the topic will determine if I make the drive or not. Michael, PM me if you're planning on going and want to ride over together from Tampa. I'm also planning on heading over to Stephanies meeting in Vero this weekend as well....
Stephanie2 Posted August 6, 2010 Report Posted August 6, 2010 I contacted Shelley to see if she "minds" me attending her meetings (since I am with the "other" organization) and she did not get back to me. That is why I did not attend her meeting. I know that Beth is not interested in the two groups combining in any way, but I just wanted to go to connect with other moms. I also invited Shelley to attend my meeting and she did not respond. Did that come up at all? I will see you tomorrow!
airial95 Posted August 6, 2010 Author Report Posted August 6, 2010 I mentioned your meeting in Vero, and Shelley said she knew about it, but that's all...
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