Hi! I would like to thank u all for the prayers sent our way. We still need them so pls keep them coming. Nicole is still in ICU.. We transferred her from a...
10503
Hari SS
babyhariss
May 15, 2013 5:25 am
Our sincere prayers for Nicole to get well soon. Best regards, Satish, f/o hari 1.5 years. Sent from my iPod ... [Non-text portions of this message have been...
10504
erika misenti
emisenti
May 15, 2013 10:26 am
My prayers go out to sweet nicole...also to you Michelle..for strenghth, its so hard knowing what the right thing to do is...please never blame yourself. I...
10505
Kcventi
popcornkcv
May 15, 2013 10:29 am
Michelle, you must be exhausted. Our prayers are with Nicole that her recovery continues slow but steady. My daughter has lots of emerg interventions and past...
10506
erika misenti
emisenti
May 15, 2013 10:30 am
My prayers go out to sweet nicole...also to you Michelle..for strenghth, its so hard knowing what the right thing to do is...please never blame yourself. I...
10507
Lynn Egan
laegan5
May 15, 2013 1:12 pm
We will continue to keep you both in our prayers. Lynn Lynn Egan President and Family Support 239 Nevada St. Redwood City, CA 94062 Cell...
10508
zuzana u
zuzie70@...
May 15, 2013 2:26 pm
Hi Michelle I am so sad and angry ..we had few trips to the ER and had to tell paramedics not to shine the bright light into Michele's eyes...some listened and...
10509
SMG
roosky41
May 15, 2013 4:29 pm
Oh, Michelle. My heart of breaking for you. Please do not feel guilty and blame yourself. You did everything you could and you are not responsible for this....
10510
MaryKay Riley
marykay12of12
May 15, 2013 5:05 pm
I know how you feel -- I have had some of these same issues when Nick was in school. The police were also called on him once too due to agressive behavior....
10511
Dominique PONCELIN
d.poncelin@...
May 15, 2013 5:32 pm
Dear Michelle, Thank you for sharing with us those very sad news. All what you said is something some of us are feeling with our kids when they go through...
10512
Glenda Davies
laurasaka
May 15, 2013 11:14 pm
I was very saddened when I read your post Michelle. It is true, we never know what the future holds for our kids. My thoughts and prayers are with you and...
10513
Karen
kluting1
May 15, 2013 11:48 pm
Hi all, We are having another bad time again with Trevor. As usual the episodes are changing again. Have any of you seen your child go down into a seemingly...
10514
Dominique PONCELIN
d.poncelin@...
May 16, 2013 8:58 pm
Dear Karen It looks to me like a full tonic (dystonia) attack rather than a grand mal seizure. From a medical point of view, the only way to distinguish...
10515
Jeff Wuchich
thewuch
May 17, 2013 3:10 am
Hi Michelle, As some have already said, please don't blame yourself. I know that is hard not to do. I've done it to myself many times with Matthew's various...
10516
erika misenti
emisenti
May 17, 2013 7:27 pm
Hello i took Tyler to his Therypist/med manager he tild me he did research on abilify and taking it with Flunarizene that it can cause movement problems and...
10517
Hari SS
babyhariss
May 19, 2013 8:50 am
Dear all, Results from DNA testing for Hari showed that Hari has a mutation in the gene ATP1A3. The mutation identified is in exon 18; c2443GtoA; pE815K. Is...
10518
Jeff Wuchich
thewuch
May 19, 2013 7:52 pm
Hi Satish, the "E815K" is one of the more common mutations in this gene that cause AHC (my son Matthew has this same one) . There is no gene therapy or drug...
10519
bright1980
May 20, 2013 11:57 am
My son is eleven months old. His hemiplegia episode time is five since he is six months old, but all the episode is his right side, whether there is other...
10520
Carol Prunty
pruntys79@...
May 20, 2013 12:45 pm
My daughter Mary's attacks began only on the right side. We didn't see them alternate until about a 10 months to a year into it. Carol ... [Non-text portions...
10521
Lynn Egan
laegan5
May 20, 2013 1:01 pm
Hi Bright, All of my daughter's episodes were on the left side and they were all dystonic posturing with nystagmus. Â She experienced her first hemiplegia...
10522
bright1980
May 20, 2013 2:57 pm
OK, I see. Thanks! Hope our children can be better soon....
10523
Vicky Platt
ahcplatt
May 21, 2013 3:37 pm
Hello Everyone, The AHCF is in the process of writing our next Family Update which is scheduled to be published in June. In the next update, we are interested...
10524
Shannon Grady
shanleigh85
May 22, 2013 12:52 pm
Hello everyone...Keira's doctor has suggested she begin taking Onfi in the hope that it will decrease the frequency of hemiplegic episodes. Do any of your...
10525
Sharon
sharonciccod...
May 22, 2013 2:23 pm
While we hope everyone is saving the date for the 2014 Family Meeting in Minneapolis, ( June 24-26) we'd like to share the photos from last summers meeting in...
10526
Katrina Sliwka
katrinaplum
May 23, 2013 12:44 pm
HI Everyone, Delaney (4 1/2) had her first true seizure on Tuesday night. We travelled to the hospital by ambulance and stayed for the night. Delaney was back...
10527
Bea .
squini_1
May 23, 2013 6:02 pm
Hi and I'm feel for you and your pain. My daughter who is 16, a freshman in high school has her stiffening spells and the aide ask's me if she if faking to...
10528
Dennis Kiernan
dennis_kiern...
May 23, 2013 7:23 pm
My son showed extreme hostility. It did start immediately - saw a change in his demeanor from the first dose. I thought it would just work itself out but he...
10529
Kcventi
popcornkcv
May 23, 2013 7:54 pm
My daughter is almost fourteen and was started on keppra at four after lamictal, tegretol, phenobarbital etc didnt work. First time she couldn't tolerate it....
10530
erika misenti
emisenti
May 24, 2013 1:22 am
I hate saying this but im glad im not alone...it is so hard Tyler makes so many strides forward than it seems as soon as i get comfortable and relieved it...
10531
Vicky Platt
ahcplatt
May 24, 2013 6:51 pm
We have been using ONFI with Emma for almost a year now. It was introduced as an anti-seizure medication and not specifically to reduce hemiplegic episodes....
