http://health.groups.yahoo.com/group/TTD-support/ trichothiodystrophy family contact Thu, 02 Jul 2009 21:38:40 GMT Sean D. Appel http://health.groups.yahoo.com/group/TTD-support/message/2322 http://health.groups.yahoo.com/group/TTD-support/message/2322 We are doing ok. The girls are healthy and busy at 1 month of half day summer school. Sounds like the dance was a success! Friends of mine from high school are Mon, 22 Jun 2009 08:08:48 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2321 http://health.groups.yahoo.com/group/TTD-support/message/2321 Hey Everyone How are you all? I havent heard from you in a while and was wondering what everyone is up to , I will post the recent dinner dance photos in as Sun, 17 May 2009 12:19:57 GMT lucyp2005 http://health.groups.yahoo.com/group/TTD-support/message/2320 http://health.groups.yahoo.com/group/TTD-support/message/2320 ... We tried phenergan - which luckily worked - (Daniel does not have seizures so we were ok with trying this) . However they neglected to tell me that it can Sun, 17 May 2009 12:19:54 GMT lucyp2005 http://health.groups.yahoo.com/group/TTD-support/message/2319 http://health.groups.yahoo.com/group/TTD-support/message/2319 Thanks everyone - we were told to give Phernergan a shot - and seeing as Daniel does not have seizures - they thought it ok to give it a shot - it worked - but Tue, 12 May 2009 23:21:39 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2318 http://health.groups.yahoo.com/group/TTD-support/message/2318 Sammy-Joe goes through many sessions of hair loss , sometimes its because his immunity is low , but most of the time its due to light exposure, to me when his Tue, 12 May 2009 22:31:22 GMT Jodi and Russ Heins http://health.groups.yahoo.com/group/TTD-support/message/2317 http://health.groups.yahoo.com/group/TTD-support/message/2317 Syd uses clonidine for sleep (helps some) - but we now also have nurses at night so we can get sleep. Jodi ... From: lucyp2005 To: TTD-support@yahoogroups.com Tue, 12 May 2009 22:31:13 GMT Sean D. Appel http://health.groups.yahoo.com/group/TTD-support/message/2316 http://health.groups.yahoo.com/group/TTD-support/message/2316 We were at the NIH last Sep/Oct and they were wonderful to us. We received a lot of information from them that we hadn't considered. We also found out that the Tue, 12 May 2009 22:30:52 GMT Sharon Slender http://health.groups.yahoo.com/group/TTD-support/message/2315 http://health.groups.yahoo.com/group/TTD-support/message/2315 Hi Lucy, I use Vallergan for James. I buy it over the counter at the chemist. It is an anithistamine with sedative in it. Sharon _____ From: Tue, 12 May 2009 22:30:49 GMT Sean D. Appel http://health.groups.yahoo.com/group/TTD-support/message/2314 http://health.groups.yahoo.com/group/TTD-support/message/2314 Alex didn't sleep longer than about 30-45 minute stints for her first 7 yrs until our pediatrician put her on Trazedone. It was developed as an antidepressant Tue, 12 May 2009 22:30:49 GMT Snackgirl9@... http://health.groups.yahoo.com/group/TTD-support/message/2313 http://health.groups.yahoo.com/group/TTD-support/message/2313 Hi Lucy, Have you tried tynol PM? It works for me when I can't sleep, I take only 1 pill and get several hours of sleep. Maybe half a pill would work for Tue, 12 May 2009 22:30:46 GMT Snackgirl9@... http://health.groups.yahoo.com/group/TTD-support/message/2312 http://health.groups.yahoo.com/group/TTD-support/message/2312 Hello everyone, Don't know if my message in regard to hair loss ever made it threw........Tara is losing her hair again, it has been growing beautiful for the Mon, 11 May 2009 06:42:27 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2311 http://health.groups.yahoo.com/group/TTD-support/message/2311 Hi Karen and Everyone thanks for your email , I am so slack lately with trying to keep up with technology , first my computer crashed like three times and Mon, 11 May 2009 06:38:02 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2310 http://health.groups.yahoo.com/group/TTD-support/message/2310 Hey Tammy Great to hear from you , the photos are great, I love looking at them , I might add the link to Sammy-Joes webpage, if thats ok with you? hugs to you Mon, 11 May 2009 06:32:45 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2309 http://health.groups.yahoo.com/group/TTD-support/message/2309 -The RCH here in Melbourne has a sleep clinic and with Sammy-Joe they have given him Melatonin to help him sleep. I am not sure what they would do for Daniel Mon, 11 May 2009 06:29:59 GMT Maria http://health.groups.yahoo.com/group/TTD-support/message/2308 http://health.groups.yahoo.com/group/TTD-support/message/2308 Happy Mothers day to all the greatest mums I know I hope Mothers day is special to you all we love you the Liistro Family xxxxxxxxxxxxxx