1 Month

By rainkinz on Jan 21, 2013, comments 19

Today marked one full month without a seizure. It's been pretty crazy. Ngaire was sick with a cold or flu when she went seizure free and her ketones were pretty low. Once she got better, she seemed to become a ketone producing champ and probably became acidotic causing her to throw up. Once we got into that state it was really hard to recover. It's a vicious cycle. She felt nauseous and wouldn't because she was overly ketotic and was probably overly ketotic because she needed to eat. Anyway, we ended up giving her 2 tablespoons of apple juice every time her ketones got over 7. We also lowered her ratio to 3.75:1. Slowly the cycle of throwing up and not being able to eat has been broken. Today she ate her full allotment of calories. She seems a lot better. Anyway, hopefully we'll continue with the seizure freedom!

It was also her 4th birthday on the 17th and she is now able to peddle and steer her bike! I teared up when I saw her riding round out front.

D0c3a4b162dc232e76a3355c35f1a52e.png?s=48&d=http%3a%2f%2fkuripai.com%2fassets%2fguest Evill on Oct 22, 2015 at 2:12 AM

Sounds good. I hate seizures but moiclynocs and absence are better then tonic clonic seizures.I'm so sorry for your children and for you who is so young and have to live with two children with epilepsy. My little brother Ethan is 7 years ols and he has dravet syndrome and he has 200-300 seizures a day. Ethan is right now on keppra, epilim and clabozam with out any success. But good luck with your children and all we can do now is to hope and pray that they will find a cure for epilepsy.

2baa60a6d0a625e422ac0fc11bede7a1.png?s=48&d=http%3a%2f%2fkuripai.com%2fassets%2fguest Aedgyth on Sep 11, 2015 at 5:25 PM

Yes your right I'd rather abencess and myoclonics than tonics or tonic clonics but I think the worst ones were the myoclonics astatic seizures because of all the damage they've caused to Sean. I used to count all his seizures daily but he has 8 different types so I've given up now. Now I just tally the tonic clonics and tonics. When I did count them all it easily surpassed 200 a day, now just counting the main two he has an average of 5 a night, so 150 a month. Sean is currently on epilim, Moga

A72f66241509f3d5e6ff3c5f964d7027.png?s=48&d=http%3a%2f%2fkuripai.com%2fassets%2fguest Rosabel on Jan 06, 2016 at 8:12 PM

That's a smart answer to a tricky qusteion