Hi, my names Debbie Thomason, my daughter Bethany, aged 5, has been diagnosed with ATYPICAL Alternating Hemiplegia, Atypical meaning shes not a typical case as...
I like to say thanks to all that responded to the aqua thearpy suggestions. My son also has a tendency to tigger attacks when put in a pool. However, I was...
It seems a lot of the kids "outgrow" the swimming trigger. Did you continue to take Jennie swimming even though you knew she would have an attack? This ...
Hi Kelly Does your child usually tolerate being outdoors without any problems? My child doesn't last long at all outside without having problems and sometimes...
Yes, if we were somewhere that she could swim we always let her do it. I think that is part of how she got more comfortable with waiting for the attack to end...
Hi all, this will be a long post but we need help and advice. We took Trevor on a trip up to see a eye Dr, we went a few days early and went to the state...
I am so sorry to hear all of this.... It sounds to me like you are on the right path. I would be hopeful that the increased episodes are coming from the...
Karen, We have no advice for you, but wanted to let you know we are praying for you, Trevor and family. Let us know how Trevor's doing- Oh, when we used to...
Hi Karen This is Karen mom to Addie (6yrs). We have been through these terrifying events when Addie was younger. I can tell you my experiences with Ativan,...
Oh Karen, my heart goes out to you and to Trevor. I'm so sorry. I'm Cameron's (he's almost 7) grandmother. Cam is on a host of medicines and still has a...
GOODMORNING; YES, I HAVE SEEN ALL OF THIS AND HAVE BEEN THERE SEVERAL TIMES. AFTER MUCH TRIAL AND ERROR, AND DEPENDING ON THE HOSPITAL AVAILABLE, WE FINALLY...
Lynda Burnham
lynda.burnham@...
Sep 15, 2005 12:37 pm
4203
We have had similar problems with Mary(now 19) When she was 3 we weaned her from phenobarb as part of the protocol so that we could use flunarizine. She had...
Hi Karen When Addie was young she would run around alot (and still does) but trip and stumble easily. She's had some pretty good bumps and once hit her head...
Mary once cracked her head on the window sill and had to get stitches. It didn't cause a worsening of episodes. When she used to get around she used to fall...
Hi Lynda, can you find out the propofol dose you are using? Or is there a way we can call your doctor or have our peds neurologist that we just found touch...
Hi Karen, I went through this with Addie for several years and it was exhausting mentally and physically. I still have not had a good night sleep in 6 yrs. I...
My son Jimmy is 13 yrs old. He has gone through periods where he used to bang his head on concrete floors until he had a big knot on his head (when he couldn't...
Hi: Sorry for the delay. As far as dosages of propofal, that is left strictly up to the anesthetists or specialist that is working with Leslie It goes ...
Lynda Burnham
lynda.burnham@...
Sep 19, 2005 10:18 pm
4211
At our Boston meeting in one of the Sunday am focus groups, sibling issues were touched upon. I received the attached from our local ARC today and thought...
At the Boston conference there was talk about sleep studies being done on a couple of children. My daughter is having terrible sleep issues and I hope someone...
Hi Vicky, When Mary was younger and restless at night we would give her 1-2 Benadryl capsules and this would take the edge off and help her to relax....
... Hi Vicky Alec also took benadryl for his sleep for about a year and then we switched to trazadone because the benadryl wasn't quite doing it anymore. He...
Hi everyone, I have noticed a change in Trevor's episodes the past few months and it is getting worse lately with a bad episode. He clutches at his throat...
Hi Karen Does Trevor have the episodes enough that he could be in a hospital and it could be observed and measured? It sounds very scary for Trevor and for...
Hi Karen, This seems to happen as he is going into a episode, no it isn't like an allergic reaction it is like he is in pain or feels strange and it effects...
i haven't seen it as you describe it with Addie but she has alot of her spasms around mouth and with tongue involved. i wish i could help you. What about...
... Alec and max have episodes involving their throats. It effects their swallowing. They have both had studies and they are not aspirating when this happens...
Hi Kelly, Thanks for your response, when you see this is it in the beginning of an episode? I was also wondering if it seems painful to them or do they...
... The throat/swallowing thing is a result of the episode and comes on as soon as it starts and could last for days. (in Alec) The pain is after an episode...
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