Hi sharon. Could you please tell me The dates for family meeting in san Francisco . Thank you Sent from my iPhone ... [Non-text portions of this message...
9511
Sharon
sharonciccod...
Jan 10, 2012 2:21 pm
Thanks for the reminder Roxie! The Family meeting is June 29, 30 and July 1st 2012 in San Francisco, Ca. Look for much more information coming this month!...
9512
Vicky Azaksken
azakoul
Jan 10, 2012 8:21 pm
Hi all, First of all I'd like to wish everyone a happy new year.May this be the year that a cure is found for AHC. So, I have a few questions concerning our...
9513
Shannon Grady
shanleigh85
Jan 10, 2012 9:00 pm
Hi Vicky - Â My daughter's therapists have always been the exact opposite. If she goes into an episode during the session they will just sit with her and...
9514
gppalmerino
Jan 10, 2012 9:48 pm
Greetings Vicky and Tony, When our son Ian has an episode, getting him to rest (preferably asleep in bed) has always worked best for him. That said he is...
9515
Brooke Nico
ohnico2003
Jan 10, 2012 9:50 pm
Hi, When Caleb has an episode at therapy, his therapist does a deep tissue massage for a few minutes, then we sit and play a quiet game of cards or something...
9516
Siggi Jóhannesson
sunnavaldis
Jan 10, 2012 11:06 pm
Hi Vicky and Tony and a happy new year. I would go with your gut feeling and let Tony rest instead if continuing the theraphy and don't let anyone tell you...
9517
Dennis Kiernan
dennis_kiern...
Jan 11, 2012 2:02 am
I trusted the elementary school totally. If they said he couldn't swallow around lunch or medicine time, I'd take him home. They had a beanbag chair if he was...
9518
azar hemmaty
maphhemmaty
Jan 11, 2012 5:11 am
Hi Vicky and Tony, Our daughter Hannah (4 years old), also has seizure with ahc episodes. We alway use Diastat at home right after the seizure starts and...
9519
MaryKay Riley
marykay12of12
Jan 11, 2012 6:16 am
From little on, Nick never wanted to come home when he was having an episode. On the rare occasions when the school felt they could not handle the situation...
9520
Ms Karen Kluting
kluting1
Jan 11, 2012 6:46 pm
Vicky,  We have always picked up Trevor in episodes at school if they last more then a half hour or are severe or have dystonia with them. He has always...
9521
Karen
kluting1
Jan 11, 2012 6:49 pm
Sorry All, I have no idea why it added all the A and weird symbols in the last post!! Karen...
9522
Karen
kluting1
Jan 11, 2012 6:56 pm
HI everyone, This is an update on the Rispiradyl trail for Trevor we have tried to increase it now to 3 tablets a day without success, and I guess at this...
Karen, what dose are the tablets? Sent from my BlackBerry® smartphone, powered by CREDO Mobile. ... From: "Karen" <kluting1@...> Sender:...
9526
Dennis Kiernan
dennis_kiern...
Jan 12, 2012 1:06 am
Hi. Yeah, I just want to clarify one thing. The business of valium suppressing breathing was told to me by Dr Andermann up in McGill. He is a world expert and...
9527
Ms Karen Kluting
kluting1
Jan 12, 2012 3:36 am
They are .25 so a very low dose for sure but going from two to three tablets he seemed to get worse!! ________________________________ From:...
9528
Ms Karen Kluting
kluting1
Jan 12, 2012 4:32 am
Dennis,  the reason we went to propofol after Trevor has a seizure is exactly what you are talking about he was snowed out for days and it didn't break the...
9530
Dennis Kiernan
dennis_kiern...
Jan 12, 2012 1:06 pm
I certainly agree that meds are a mixed blessing and that reactions vary greatly. For example, chloral hydrate was used early on to get him to sleep upon onset...
9531
Vicky Azaksken
azakoul
Jan 12, 2012 7:25 pm
Thanks everyone...your responses are always helpful.:) Vicky & Tony  ________________________________ From: Dennis Kiernan <JIMMYAHC@...> To:...
9532
Ms Karen Kluting
kluting1
Jan 12, 2012 9:35 pm
Dennis,  I totally agree and hate Phenobarb with a passion however, I hate the seizures worse and everything that comes with them. I go crazy trying to...
9533
JIMMYAHC@...
dennis_kiern...
Jan 12, 2012 10:09 pm
Believe me, I know. He's been on abilify for 6 weeks now and it seemed to make him more OCD, timid about going places, emotional, etc. AND YET, I haven't...
9534
Becky S.
take2xcess
Jan 12, 2012 10:57 pm
Karen, Oh my goodness, the stress involved taking care of Jake is overwhelming at times. You are right about the guilt. I feel guilty also because I am a...
9535
michelle
teapots44
Jan 14, 2012 5:43 am
Hi! My daughter Nicole just turned 22 years old. I haven't posted for awhile but I read all the posts regularly.I'm glad I'm not the only one feeling like I'm...
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MaryKay Riley
marykay12of12
Jan 14, 2012 3:51 pm
Michelle, everything you said hits the mark. It is an all consuming parenting experience that we have been given. I too get angry/frustrated at many things...
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Becky S.
take2xcess
Jan 14, 2012 4:11 pm
Ha Ha, I am laughing and crying at the same time...every door and doorknob in my house is broken. Mary Kay - walking is my "get-a-way" from Jake. I plug my...
9538
Kelly A. Andrasco
kelly_andras...
Jan 14, 2012 4:17 pm
Michelle, You are not alone! I feel EXACTLY the same way and my daughter is only 10 years old. We had a really rough couple of months with aggression, ...
9539
MaryKay Riley
marykay12of12
Jan 14, 2012 4:51 pm
Ok so here is another one. Nick and I are heading to downtown Minneapolis tonight for a night away from home and a function I wanted to attend, couldn't find...
