Ethosuximide treatment

Re: Ethosuximide treatment

Submitted by DawnMaries on Sat, 2009-04-18 - 22:16

Welcome JMommy!!  Since my post my Son is continuing to have a few sz a day and we just had a 24 EEG done and the Dr has decided to switch to Depakote.  Our Dr wants complete control of his sz.  My husband and I were very happy at the 80-90% decrease that we noticed but apparently the amount that he continues to have is too many.  My Son's appetite completely changed too.  But that lasted maybe three months, he has his appetite back!!!  I understand what you mean about seeing these changes in our kids.  Fortunately CAE is usually outgrown.  I have read that there are cases where it developes into a different sz.  I brought this concern up to our Neuro and she assured me that there is no reason Raymond will not outgrow these.  She mentioned that children who suffer from other serious medical conditions tend to have sz that progress into GM.  So I am hopeful that we will be on med's for a couple of years and be sz free after that!!  I wish you the best of luck with your Son....I have noticed a lot of the side effects from the Etjosuximide have gone away, it just takes time. 

Dawn

Re: Ethosuximide treatment

Submitted by delightedmom on Mon, 2012-05-14 - 13:42

Hello Parents, Sorry for the long post.  I thought I could share my story with you all. My story might help answer some of the questions you have. When I started this long , difficult & tiring journey I was confused, looking for answers , scared to death. Let me start: In Sep 2009 my daughter (then 5 years) was diagnosed with Absence seizures. I think it started somewhere in April 2009 but we thought it’s just a kids thing that she does. Never imagined it would be this. It initially started with she stopping her activities/talking in the middle for about 5-6 seconds and then being normal. This happened 3-4 times  a week. After a couple of months, this started happening many times in a day but now she would stop for about 2-3 secs. We thought its just a phase and she would get over it. When we took her to see her pediatrician for a routine checkup and mentioned it to her, she immediately sent her for an EEG. And our worst fears came true.  It was hard to come to terms with it and realize that my beautiful little one was having these since April and we did not do anything about it. We were immediately sent to a pediatric neurologist and he started her on Ethosuximide. He assured us that since she did not have any other neurological issues and did not have a family history she would outgrow it in a couple of years.  She was started at 3tsp twice a day. We started seeing a difference within 3 weeks. The frequency of episodes went down. Week 4: We did not see anything. We thought we had them in control. But darn it, we were wrong. Week 5: we started seeing these sutle fluttering of eyelids where she would stop talking in between for about 2-3 secs and then be normal. They were definitely going down but were still there. The doctor increased the dose to 4 tsp twice a day. The side-effects started in full swing with this increase in dosage. She could not sleep. She would get up every 2 hours and then be awake for 2 hours. It was so difficult. She absolutely could not get sleep. This went on for 2-3 weeks. We told the doctor. He said since the purpose of the medication is to gain 80% control over seizures and at this point since its not affecting her learning and since they have gone down, we could just keep her with the initial dosage. And she would outgrow it. 

I could not buy into this. I could not see my child go thru this even though they were short in duration. We went to see another pediatric neurologist. The moment we told him that its affecting her sleep he immediately split the dose to three times. 4ml in the morning, 2ml at 5pm and 2 ml at 8 pm. With this we started seeing an improvement in her sleep pattern. She would still wake up 3-4 times in the night but atleast get 8 hrs of sleep. The seizures were still there. It was as subtle as just an eye blink. But I could see it. We slowly started increasing the dose. With every increase her sleep pattern would be ruined but somehow we stuck through it.  Finally in Aug 2010 we got her to 9ml in the morning- 4ml at 5pm and 4ml at 8 pm. From Nov 2010 we stopped seeing these episodes. At this point her sleep was not perfect but better. She would still wake up once but would get atleast 9 hrs of sleep.

So we went for a 24 hr EEG in Mar 2011. Even though we did not see seizures, there was seizure activity. And the report said the longest one was between 4- 5 sec and the shortest one was 1 sec. The doctor said we do not need to increase the dosage. So it was decided to keep her on the same dosage for 1 year. By now her sleep was perfect. The blood work reading was 118 but no side effects at all.