madbay Posted March 20, 2012 Report Posted March 20, 2012 Hi all, The pandas parents meeting on the South Shore was well attended tonight and we were lucky enough to have a local RN who treats pandas at our meeting. One of the things we discussed was trying to get MGH (we have ruled out Childrens because they have been very/more unhelpful) to recognise PANS, take it seriously, and agree to: 1-learn from the experts 2-Create a treatment protocol based on what the experts go on (ie Dr. B, Dr. T, Dr. K, etc) 3-centralize treatment here in Mass, including Abx, steriods, IVIG etc (and oh by the way, not lose millions of dollars of spending on treatment in other states) We are going to be gathering information about diagnosis, treatment, test results, etc from as many mass parents as possible. We will keep all info vague, so no full birthdates or full names. Once we get this info, we are going to try to approach MGH in a formal way to discuss their interest/ability to participate in a symposium and we are going to get the experts here to boston to meet wih them. If you are interested and willing to share some data on your child, please PM me your contact email address and I will include you in the email I send around to gather data. Thank you so much for your help in advance!!!
KaraM Posted March 20, 2012 Report Posted March 20, 2012 Great idea! Count me in! I sent you an email. Kara
minimaxwell Posted March 20, 2012 Report Posted March 20, 2012 @ Kara , can you please call me? 508.667.0574 I may be in meetings until 3:30 but please leave me a message if you get my vm. I have been working on putting together a team at MGH, let's coordinate and compare notes!
minimaxwell Posted March 20, 2012 Report Posted March 20, 2012 @ Kara BTW- I forgot to introduce myself- Tiffani Maxwell DD Drew is 17 PANDAS
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Megan, I will do a longer reply when I am on my PC , but just wanted to say that I really enjoyed the meeting last night. I learned a lot! Having Peggy there was wonderful. She was very well informed on PANS and overall health. Good to see you! I'll be looking out for your email.
bulldog24 Posted March 20, 2012 Report Posted March 20, 2012 Sorry i missed the meeting. DD had ,rxn to orapred. Sounds like a good meeting. I am happy to participate in any way. Will pm you. M
madbay Posted March 20, 2012 Author Report Posted March 20, 2012 Hi Kara, I didnt get your email, but please email me your email address at megangreenstein@aol.com Thanks so much! Great idea! Count me in! I sent you an email. Kara
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