http://health.groups.yahoo.com/group/Peroxisomal_Disorders/ Family Support for Peroxisomal Disorders Wed, 25 Nov 2009 14:00:54 GMT Ciera's Dad http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2056 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2056 Hi Suzanne, You have our prayers and thoughts.... and our wishes for good EEG results! -Jim Wed, 25 Nov 2009 04:20:06 GMT Karen Smith http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2055 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2055 Hey Suzanne!   You'll be in my prayers tonight.   Funny thing is, Joel was just in the hospital last night for a high fever with some ferbile seizure Wed, 25 Nov 2009 02:16:57 GMT Patty DelSorbo http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2054 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2054 Suzanne, Thoughts and prayers to you and Lizzie. What hospital is she in? Take care. Love and prayers, Patty DelSorbo Wed, 25 Nov 2009 01:31:18 GMT Suzanne Collins http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2053 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2053 Hi Everyone   Just sending a quick note to let everyone know that Lizzie is back in the hospital.  This is our 3rd stay this year...uuuggghhh!!   She Tue, 24 Nov 2009 20:37:27 GMT Katie Sacra http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2052 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2052 Not too long & to the point. I think you should send the letter as soon as you straighten out the MRI date &/or send a copy to them too. Some times you sadly Tue, 24 Nov 2009 16:10:22 GMT Jennifer Black http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2051 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2051 Karen, In September we did a sedated BAER and MRI for Dane (12 months old). He did fine under general anesthesia; in fact he was under for just about 2.5 Tue, 24 Nov 2009 04:11:16 GMT Katie Sacra http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2050 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2050 Karen, If I could be there to cry until we laughed I would in a second. It just sucks, sucks & sucks! Many, many hugs to you. I am so sorry there are so many Mon, 23 Nov 2009 18:03:34 GMT Karen Smith http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2049 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2049 Ok, here it goes again. __________________________________________________________________ The new Internet Explorer® 8 - Faster, safer, easier. Optimized Mon, 23 Nov 2009 17:25:28 GMT Karen Smith http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2048 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2048 You are not going to believe this!  I got a letter in the mail today saying that the MRI was rescheduled to APRIL 9th!!!   I was so frustrated and angry!  Mon, 23 Nov 2009 16:18:00 GMT denisem321 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2047 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2047 Thanks again! Mon, 23 Nov 2009 03:21:33 GMT Elizabeth http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2046 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2046 Her name is Dr. Myriam Baes. Sun, 22 Nov 2009 18:22:41 GMT Suzanne Collins http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2045 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2045 Heather/Karen   OMG....I soooo, very much, AGREE.  That Ped sounds lazy and uninterested in my opinion.    I recently had to change Peds as our moved to Sun, 22 Nov 2009 17:52:06 GMT Heather Edgar http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2044 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2044 Karen, You already know what I think. It shouldn't have to be your job to have to coordinate all of this, it's your ped's. He should also be the one who is Sun, 22 Nov 2009 17:08:09 GMT Patty DelSorbo http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2043 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2043 Karen, Ana has never had a ABR under general, she had chloral hydrate, then IV sedation. The chloral hydrate didn't work well, we had to drive her around Sun, 22 Nov 2009 07:27:42 GMT Karen Smith http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2042 http://health.groups.yahoo.com/group/Peroxisomal_Disorders/message/2042 Ok, I finally had enough!  I decided screw it!  I am not calling these people all back and forth and over and over!   So I decided my answer to the whole