Hi Everyone. All settled in, back from the conference and just wanting to say that it was very good to finally meet and see some of the families who are going...
HI. I hope you all had a great time at the conference. We would love to come one year. we live in England. I wondered what you learnt and if you would share...
Hi Sue, There was some very interesting however, contraversial, evidence of some new meds that Dr. Katchan has been trying, but I'm cirtainly not the person to...
Hi Karen, So sorry for the continued delay. Here is what I have, but I have to caution that what I heard and remember might be different from other folks so I...
Hi Karen, So sorry for the continued delay. Here is what I have, but I have to caution that what I heard and remember might be different from other folks so I...
Thank you Paula for all the conference information! Cameron (9), his mom, and I were at the Boston meeting but were unable to join you all at this one, so we...
Wow Paula! Great job and thanks for putting so much time into summarizing the meeting. I've never seen Dr Swoboda's link and it is really informative. We...
Wow Paula! Great job and thanks for putting so much time into summarizing the meeting. I've never seen Dr Swoboda's link and it is really informative. We...
My husband and I had intense conversations with numerous people after the Family meeting regarding the future use of the drugs Dr. Katchan mentioned. We were...
We just got home from the hospital due to A bad episode. My son turned 4 beginning of June and the episodes started getting more frequent in May but by the...
hello to all I hope you all that was able to attend the metting enjoyed it my family was unable to attend we went to the one in Boston but unable to go this...
Thank you Paula - your email was very informative! I was surprised when I clicked on the link to find my daughter, Laura, on a video. Until now, I didn't know...
Hi, everyone I uploaded some of the pictures I took from the conference. I apologize for the quality of the photos the hotel was very dark and I tried not to...
Hi, My son Jacob, age 16, uses Valium for really bad hemiplegic or dystonic episodes. It was made by a compound pharmacist, it is a gel that I pull up in a...
I'm sorry to hear that your son is not well and that you are not getting much help from your doctors. I don't know if you are already doing this or not, but...
Hi. We also use rectal valium on Aryssa and it works 80% of the time. We had an appointment with the neuro 2 weeks ago and she suggested that we should...
Friends, It was good to see everyone at the conference last weekend. We didn't get a chance to personally meet everyone (there's just not enough time), but it...
Thanks Heather for writing this down and emailing it to all of us! I had just sat down at the computer to type all this up to send to my in-laws and Jamie. I...
Thank you so much Heather and Jay for the information on Dr. Katchan's presentation. I will show this email to Laura's doctor here in Australia and see what...
Those are great notes and an excellent explanation to the group. As I mentioned in an earlier email, we were supposed to hear from the research team in Utah...
Are we talking about GHB, the "date rape drug"? i mean really, are we? wendy ... From: afha@yahoogroups.com [mailto:afha@yahoogroups.com]On Behalf Of Olga ...
Apparently the 'date rape' drug is a derivative of sodium oxybate (Xyrem from Jazz Pharm.). Because of its potential for abuse etc this is a class 3 substance...
A different version. Olga A. Gerber South Windsor, CT 06074 _____ From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of Wendy Sent: Monday,...
Quote from previous email ... Unquote Quote from Project GHB (http://www.projectghb.org/narcolepsy.htm) GHB and Narcolepsy While lobbyists, parents, and...
First, I want to make clear that I was just presenting the information that was given to us at the conference. Only a small number of people were there and I...
I don't want to start an argument, but I really feel the need to respond to some of the harsh words you used toward me (that is how I took it). --I have sat...
Wendy (and all the Friends and Family in the AFHA Group), This is probably not going to be the only email on this subject, so I'm sorry if this is part of a...
First, i am sorry about hurting feelings. i should have waited the 2 - 24 hours i usually wait before sending an email. Time does calm one down, and i didn't...
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