Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

New to the group

Posted by on Feb. 13, 2009 at 2:29 PM
  • 3 Replies
  • 446 Total Views

Hi everyone, I just joined this group.  My son is 10 and has epilepsy ,he has been on the keto diet for almost 6 years.   He also has chronic lung disease and due to aspiration risk has a GT for feedings.  He now uses the KetoCal formula with ProViMin for his meals.  The diet was a miracle for him for the first 4 years(went from 10-30 seizures a day to 1-2 a month) but then an illness which required heavy antibiotic use dropped his ketones badly and after that he started having a new type of seizures many, many times a day. A new neurologist lots of tests and a new seizure med finally got things back under control.  He is now on a modified keto diet.

Heidi  

Junior's Amazing Journey

http://heidis-place.blogspot.com


by on Feb. 13, 2009 at 2:29 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-3):
blessedwith12
by Member on Feb. 14, 2009 at 10:26 AM

Welcome to the group. I'm glad to hear the diet has worked well for your son. Our son is 7 and has had seizures for over 4 years. He was recently diagnosed with Doose Syndrome. He is on the Modified Atkins Diet and is now off of all of his meds. He averages 1-2 short seizures/day, usually in his sleep.

Finlansmama
by Group Owner on Feb. 14, 2009 at 10:44 PM
Welcome aboard, Heidi! Sounds like you've got a lot of experience with this diet. You'll probably be more help to us than we will be to you ;) How long ago did he lose seizure control? Is he back down to his 1-2/month since the new med? What is he on? Carrie, mama of Finlan, ketokid since May 2008
hjoy09
by New Member on Feb. 15, 2009 at 11:08 AM

Thank you for the welcome.

It was about 2 years ago that we lost control.  He had a bout with H-Pylori and had to be on 2 very strong antibiotics for a month.  After that he started a new type of seizure and was having them several times a day along with lots of focal seizures.  His neurologist told me there was nothing he could do and bascially to take him home and make him comfortable.  These seizures were destroying his airway.  I said no way, and took him to a new neuro.  He is amazing and an answer to prayers.  He did a bunch of tests and then started Junior on Depakote.  Since that day a year and a half ago we have seen just 2 of that new type of seizure(that was in the first 6 months, we have seen none in the last year).  He does still battle with extra focal seizures and he has to really work to focus at times but he is back to just 1-2 larger seizures a month(tonic/clonic, full body involvement).  He is on a modified version of the diet because his body wouldn't fully matabolize the depakote tablets and he has to use the liquid(valproic acid).  He is on Lamictal and Valproic Acid  for his seizures along with the diet.  His ketones usually show as around 40 and with recent lung infections and lots of prednisone use they are currently showing as trace.  So far no increase in seizures. 

Heidi

Junior's Amazing Journey

http://heidis-place.blogspot.com


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)