HI Karen We have not dealt with this bc Addie is just starting with the more typical dystonic episodes. We are still having issues with her oxygen and going...
9818
MaryKay Riley
marykay12of12
May 22, 2012 2:22 am
If I recall correctly, possible spine issues were brought up at the Chicago meeting in 2002 with suggestions that our kids be checked by an orthopedist. I...
9819
Lynn Egan
laegan5
May 22, 2012 3:18 am
Kathleen had gingival hyperplasia and had surgery in 2005. The surgery and recovery went remarkably well. A few days of her being uncomfortable. The gum...
9820
Christine Morris
christine.mo...
May 22, 2012 3:24 am
Haley (at the time 19) had her wisdom teeth removed last year. Two were impacted; the other two had erupted and just needed to be pulled. She had twilight type...
9821
Kcventi
popcornkcv
May 22, 2012 12:04 pm
Hi Everyone, Our neuro is talking about trying Abilify bc Addie is having more events requiring hospital trips. I just read the issues Dennis posted that...
9822
Kelly A. Andrasco
kelly_andras...
May 22, 2012 12:10 pm
Kiley has been taking 5mg of Abilify at night for about a year (?). We increased her dosage by 2mg (given in the morning) within the last couple of weeks. It...
9823
marykayriley@...
marykay12of12
May 22, 2012 12:49 pm
Yes nick sat through the entire procedure when the braces were put on. Some of it was motivation because nick's front teeth were far apart and it bugged him....
9824
Kcventi
popcornkcv
May 22, 2012 1:26 pm
Mary do you think it's the movement of the teeth then that causes the gum overgrowth to get worse? Sent from my iPad...
9825
cjchaparro@...
cassiechaparro
May 22, 2012 2:04 pm
I think the gum swelling comes from the gaps in teeth closing, pushing formerly stretched tissue out of the way. I had a significant midlife gap and braces...
9826
JIMMYAHC@...
dennis_kiern...
May 23, 2012 12:05 am
This is about excessive gum growth. The dentist and several neuros have told me that the excessive gum growth is due to the meds, in particular seizure meds...
9827
marykayriley@...
marykay12of12
May 23, 2012 12:19 am
Nick's gums did not grow back. He sees the dentist 2x year for cleaning. His pediatric dentist said the excessive drooling was a good thing since it kept his...
9828
Brooke Nico
ohnico2003
May 23, 2012 12:23 am
Hi all, Caleb doesn't have scoliosis, but he does have syrinx (cyst) on his spine. This was monitored for growth with MRIs every 6 months for a few years, but...
9829
Carol Presunka
calgirl_95008
May 23, 2012 4:12 pm
Hi Karen, Alex has scoliosis and wears a vest which has a name but it escapes me right now. It it custom made and has provided great support. Surgery has...
9830
Kcventi
popcornkcv
May 24, 2012 12:47 pm
Hi Kelly Has the abilify worked for aggression/mood? Is she on other meds too? Did u try other mood meds before abilify? Karen Sent from my iPad ... ...
9831
Vicky Azaksken
azakoul
May 24, 2012 7:43 pm
Hi Tony (5 yrs. old next month)has had 3,5 hours of dental surgery consisting of 7 root canals and one tooth was  pulled out about  two years ago .I ...
9832
Dominique PONCELIN
d.poncelin@...
May 26, 2012 11:29 am
Dear Karen Here my experience as about spine surgery in France for AHC people: 1/ Out of 52 AHC families, 3 spine surgery have been done so far (age 19 17-...
9833
Kcventi
popcornkcv
May 26, 2012 2:47 pm
Addie was using a digital drawing board connected to computer and it set her off. She couldn't see I assume bc of rapid nystagmus in both eyes. Then she...
9834
Brooke
ohnico2003
May 26, 2012 3:07 pm
We use Tylenol PM for those pre-migraine headaches Caleb gets them often after extended computer work. The PM helps him go to sleep also and stave off an...
9835
Kcventi
popcornkcv
May 26, 2012 3:45 pm
Thanks Brooke. I will try the Tylenol. Do many kids sleep a long time after and AHC episode? We always thought when Addie slept for hours after an event that...
9836
Paula Couture-palmerino
gppalmerino
May 26, 2012 4:13 pm
Hi Karen, I don't know if this info is helpful, but Ian, without episodes or illness, can easily take a 2- 3 hour nap daily, sometimes 4 and on those days...
9837
Dominique PONCELIN
d.poncelin@...
May 26, 2012 5:06 pm
Dear Kelly Indeed, seizures are part of AHC for nearly 40 to 50 % of the diagnosed cases. Every child is different from this point of view (some are starting ...
9838
Kcventi
popcornkcv
May 26, 2012 10:00 pm
Has anyone had success/failure on Depakote? If u don't mind sharing, what other drugs r also being used with it or tried and failed in past? Have seizures...
9839
Carol Prunty
pruntys79@...
May 27, 2012 12:05 am
Mary has been on a combination of Valproic Acid ( Depakote) and phenobarbital for the last 6 years (almost 7) and it has kept her basically seizure free. She...
9841
Kelly A. Andrasco
kelly_andras...
May 27, 2012 2:37 pm
Karen, With the 3 seizures we’ve experienced with Kiley, she goes to sleep immediately following them for hours. This happened with the first two where I...
9842
Kelly A. Andrasco
kelly_andras...
May 27, 2012 7:28 pm
Karen, She was initially on Risperdal for a year and a half?? Then we added Abilify. Then we weaned off and started over. Now she is on Lamictal (for...
9843
mj mccartney
mjm4th
May 27, 2012 7:53 pm
Hello All, Our Son Mac has been on Abilify for about 3 years, 5mg in the morning and 10 mg at night. Â It has helped his behavior an aggression issues to a...
9844
Jeff Wuchich
thewuch
May 28, 2012 2:51 am
Matthew did have documented epilepsy on EEG Feb, 2009. Doctors were weaning him off of phenobarbital after getting the AHC diagnosis thinking he had no...
9846
Vicky Azaksken
azakoul
Jun 1, 2012 4:32 pm
Hi everyone, We have been having a tough time.Tony was in the hospital again twice in a few days(that's new for us)and 7 times from February til now.He had low...
9847
Sharon
sharonciccod...
Jun 2, 2012 12:39 am
Hi Vicky, I'm sorry Tony is having such a hard time. There should be some news on the genetics findings soon. Once the cause/s of AHC is found the next phase...
9848
Chrystal Wagner
wagnerchrystal
Jun 2, 2012 3:36 am
Karen, I am curious about the dystonic episodes. Hunter has had two "seizures"; in the last 7 months. I say seizure, but instinct tells me that they...
