hello everyone I hope all is well, I have been looking over the e- mails that ya all have sent and was couriose about the med, LiQ10 that people have been...
Hi Everyone, I need some help udnerstanding if Addie's latest presentations are AHC vs seizure. She is 8yrs old. Is there a major change in presentation...
I forgot to add that she is very dazed, breathing is through mouth and seems slow but oxygen seems ok, she is in slow motion and totally zoned. Eyes have a...
Hi, Karen Sorry to hear about Addie. This disorder is so frustrating. I can't say Alaina has experienced the same things Addie has in regards to her episodes,...
I am so sorry to hear about Addie's attacks, Tyler has not yet had the shaking like that but when things first started with him the pain he would go through...
Before the days when diastat was available we had to take Mary once( it only happened once) to the emergency room and have them give her an IV of ativan to...
Hi Carol, I was afraid to use the diastat b/c I have only used it for her seizures ...when she goes unconscious. We just got back from Children's and didn't...
Hi Karen: You have not heard from me for a long time. We promised that we would get togther in Boston and we will. We plan to be there over Xmas. I will...
Lynda Burnham
lynda.burnham@...
Nov 11, 2007 10:18 pm
6256
Hi Karen, I am so very sorry to hear that Addie is having such a difficult time. Our thoughts and prayers are with you all. While Ian has not experienced much...
Yes Tyler is on Klonopin we have Clonazapam wich is the same and it helps with the tightness of the muscles and lessons the severity of the episodes. I hope...
... the way Addie's do so I really can't tell you if it's seizures or not. But I was thinking maybe Addie should have a 24 hour EEG done. She probably has had...
Dear Karen- For the first time in her five and a half years, last week I woke up at 4:30 am to find Emma in a seizure type state. Tara instantly came to my ...
Vicky you must have been so scared. I am sorry Emma went through this. Have you thought about following with neuro about antiseizure drug? Addie has never...
My son Jimmy is now 15 yrs old. He used to have episodes of paralysis lasting all day for about 3 days on average with maybe 5 good days between. There was...
My son Hunter's episodes sound a lot like Jimmys. He is 20 months old right now. He is in a right side episode. His last episode lasted 26 days. 8 on the...
Greetings, I don't know if this review link has been mentioned before on the chat group or not, but I thought I'd share it. It is called The treatment and...
Paul I just read this review and the details are on the mark and should be given to everyone who is handling our children.Ever care provider can benefit from...
MANEEXP@...
Nov 17, 2007 4:49 am
6265
I'm unable to pull up this .pdf file even when I goe to 'enrah' site. Is anyone else having this problem? Any suggestions around it? I would like to read...
Paula Thank you so much for sharing this. Janet/Don Kilpatrick ... From: pgpalmerino To: afha@yahoogroups.com Sent: Friday, November 16, 2007 11:20 PM Subject:...
Don Kilpatrick
donkilpatrick@...
Nov 17, 2007 4:02 pm
6267
Karen, I changed the report to open with a word doc, hoping you could pull it up. I am attaching it. Renee Compton kcventi <kcventi@...> wrote: I'm...
For those who are using or have tried klonopin, how much, how often a day and for how long has your child been dosed? Addie is trying it at .125 mg (dissolving...
Karen, Hello Tyler has been on Klonopin for along time like 6 years, but his mg.is .05 and takes one in am and a half at night time. may go to 2 just waiting...
Thanks Erika, your input does help. Addie had her 1st extended ahc spell (total body) since she was 2 yrs old and started flunarazine. Up until last w/e she...
I am glad to give my input when it comes to helping our children. The Klonopin is for distonia which from what I hear some of our children have, That is what...
That's a long one! Very sorry. His average had a lot of scatter so I hope this is very rare. During episodes, sleep was the best for comfort. Long rides were...
Is there any way we can get a survey about aggressive behaviors in AHC kids? I just saw the mention of Tyler's aggression and the behavior support plan at...
I think it is critical that schools/teachers/doctors/care givers/etc. do not blame AHC for aggressive behaviors in our kids. I'll preface my comments by...
Dennis, I think your idea of some sort of survey would be great. My son Michael is 13 and starting this, so i can see by the age 15 it worsening. I have a...
Renee, Sorry I don't get a chance to check this site very ofter but I wanted to get back to you about Hunter. Trevor my 8 y/o used to do the same thing you...
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