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Ethosuximide treatment

I am writing hoping to find out a bit more about the treatment of Ethosuximide.  My 7 year old Son was diagnosed 1 month ago with Childhood Absence Seizures.  His Neurologist started him on 250ml a day of Ethosuximide and after 1 week 250ml twice a day.  He is on day 15 and my husband and I have seen a huge decrease in the amount of seizures he has a day but we are still noticing that he is still having them. They seem to last for just a split second and I have noticed that they occur when he is tired.  Usually early in the morning or in the evening time.  I told his Dr that he was still having them (less frequent) after the first week on medication and she said that was to be expected.  So I guess my question is Ethosuximide suppose to stop seizures completely or just decrease the amount that you have a day.  Or is it still too soon on the medicine to see a difference?  Any answers on this subject will be greatly appreciated.  Thank you!

Comments

My 7 year old daughter has been on this medicine for two months now.  At first it completely stopped the seizures from what I could tell.  Now it seems like they are starting to come back.  Her doctors said that as long as the seizures are being cut down by like 80% they would be fine with that. 

Do you know how many he was having before?  Has he had any side effects from this med?

Marisa

Hi Marisa, thank you for replying.  On average my Son was having 20 plus a day before starting treatment.  On some occasions it seemed like he had many more.  Both my husband and I have definitely noticed a dramatic decrease in the amount he has now.  Although I noticed that the past three mornings he has had at least one before going to school and last night I noticed him to have a couple.  They last just split seconds though.  His before treatment never lasted more than probably 10 seconds.  I am wondering if it is because he is getting back into a routine again with school and having to get up earlier than when he was on vacation over the Holiday's.  He so far has had no reaction to the medication but maybe being a little more tired at evening time. I called his Neurologist to give her an update and she seemed to be comfortable that he was still having them and told me to wait a little longer, that this was typical.  Were you told that these seizures would be outgrown? Our Dr said that he would outgrow them and that after 2 years on treatment we would slowly take them off the medication.  And also we are only scheduled to see her every 6 months for 2 years. 

Dawn

Hi Dawn,

Its nice to hear somebody else's story.  It sounds like they are both going through about the same thing.  She was having, by the doctors guess, about 30-40 a day.  And they were always under 10 seconds.  I work during the day so its really hard to tell truly how many she was having.  She started the Zarontin and they went away.  It seems like she is starting to have more again but they are definitely shorter or it seems like she starts to have one and then it stops.

When she is tired it really has an effect on her.  I have to make sure she gets enough sleep because then I notice more.

I was told by the doctors that most likely she would grow out of it by puberty.  They said once we got her seizure free, or mostly, they would keep her on the medicine for a couple years and then start taking her off of it and just see what happens.  They also said there was a 25% chance that this would develop into the tonic clonic seizures.  So I just keep hoping that it won't.

Marisa

Hi -

My 5 year old son just started this medicine 2 weeks ago. He has been going to the bathroom more frequently. I am assuming this is a side effect. I have too noticed him still having some episodes in the morning and at night when he is tired.....He started on 2ml for 7days now he is on 7ml and will increase to the full amount on Friday. Does anyone know the long term effects and if this medicine is not stopping them, then what do you do?? Thanks Jenn

Hi.  My 7 year old daughter has been on Etho for about 8 weeks now and at first I noticed that the medicine really helped and she had a good couple of weeks with no seizures, but then they started up again and seemed to last a little longer.  Her Neuro told us that we just need to get her at the right dosage of medicine to get them under control and that may take a few months.  So we're just on a schedule to slowly increase her Etho dosage and going in for EEG's to see how it's working.  Hope that's helpful!! 

Thank you for your response.  I spoke to my Son's Neuro today and she increased his dosage at bedtine to 7.5ml so hopefully that will completely control his sz.  She said wait a week and if they still continue then we will up both doses per day to 7.5ml. So I was happy that we are staying on Etho and not switching to something else.  How many ml is your daughter currently on? Raymond's Neuro said that we have room to increase even more before switching to another drug.  So I was curious how much a child can go up to a day on this particular type of medicine.  Thank you again for your reply.

Dawn

Our little girl weighs about 55 pounds and when she was on 6ml, her bloodwork indicated she was at approximatel 60% of max dosage.  She is currently on 8ml and were waiting for her bloodwork report.  My guess is she'll max out on Etho at or near 10ml twice per day.  So to answer your question, the amount is weight based and toxicity is measured with blood samples. 

Sounds familiar.  Our soon to be 8yr old daughter has been on Etho for about 8 weeks too. The medicine diminished most but not all of her seizures immediately but since have increased.  Our Neuro is increasing her dosage from 7ml to 8ml twice per day.  Though she eats (not well) before taking the medicine, she has severe nausea and we're NOT sure how to help alleviate it.  Any suggestions would be welcomed.  

We've been wondering if there would be less nausea if she was taking the tablet version vice liquid Etho. Hopefully the nausea will subside when she stables out on 8ml.  Hopefully the seizures will stop! We are on a path to maximize her Etho and then more than likely add Depakote.  We've also noticed the medication's effect on the types of dreams she is having.    

My son has been having more dreams that he remembers of late. Nothing too strange or out of the ordinary but he often wakes up in the morning and let's me know what he dreamt.  Our Neuro said that Depakote will be the next drug we try if the Etho does not completely control the sz. I am not at all happy about this and I am hoping that maybe there is something else we coud try instead.  I have read all the possible side effects that can occur years down the road that has me terrified.  So hopefully for the both of us the Etho controls them completely!! 

Dawn

My daughter has definitely started to have more seizures and she has been on Etho for almost three months.  They completely stopped for awhile but now it seems like they are longer than before.  My daughter had many problems sleeping because she was having bad dreams.  From the moment she started taking the medicine she was waking up at least 3 times a night.  I think her doctor said if we switch the medicine, we would go to lamictal next.

 Marisa

Hi, Our 9 year old son has been on Etho since April 2008.  Now his dose is 5ml in the am 6 ml in the afternoon and 10 ml at night.  At this dose I am pretty sure his seizures have stopped.  And, that is important.  The absence seizures must be stopped completely in order for the child to grow out of them.  Sometimes it seems like he might be having a seizure so we watch him closely.  Now he tries to fake it for a joke and we tell him it's not funny. 

When he first started taking the Etho his seizures would stop, then they would start up again, and the doctor would raise the dose.  And, that happened time after time.  It would make me think that I forgot to give him his medicine.  When I finally figured out the pattern I would make sure to call the doctor and have him adjust the dose.  It shouldn't take more than 2 to 3 weeks for the dose to work if it is going to work.

I am hoping this is it.  Otherwise the doctor will add another medicine.  Each time we get to a new dose I expect that this will be it.  It can be nerve racking.

Shelly

 

Hi my daughter was just diagnosed about 3-4 weeks ago. She is on Etho>>>>> . She has the axact story as you. She is on day 17. Is your child having nightmares? my daughter is, so i was wondering if you new if they would go away or not?

Greeting's!  Since I posted that my Son is now at 10ml am and pm and is still having a couple sz a day. He is at the limit for this medication and will have to switch to Depakote if they continue.  His Neuro ordered a 24 hour eeg to determine that he is indeed having sz's and nit just zoning out (daydreaming) because they do look different than before....they are very brief and his eyes do not flutter like before.  So after that we will decide if Depakote is the best choice.  But about the nightmares, he has not mentioned having any.  He has in the past had them and wakes us up right away. I know that this is a side effect of this particular drug but I am not sure if they go away. My Son however does laugh a lot in his sleep.  Just this past week he has woke me up twice literally laughing.  He has no recollection of it in the morning.  Wishing you the best of luck I know firsthand how frustrating this can all be.  Take care.....Dawn

Our 8 yr old girl is on the maximum dose for her weight 8ml 2X / day but still has signs of seizing...though considerably less than when she was on a lower or no dose of Etho.  Every time upon increasing her dosage, she would experience nightmares but they subsided within a week as well as her severe nausea.  That said, our neuro plans to change to depakote over the course of the next 10 days or so.  We are so hopeful that depakote gets the seizures under control!  Wishing you the best...

Thank you!  After researching more about Depakote I am actually more comfortable switching to it if we have to.  Our Neuro expressed to us that she wants to see total control and Depakote seem's to be the best at doing this.  My son experiences nausea with the Etho sometimes too.  His appetite is no where near what it use to be and he has actually lost a few pounds.  Have you experienced this with your daughter also? Please keep me posted on your daughter and if her sz stop after switching to Depakote. Best of luck to you and your family!!

Dawn

Hi! My 9 year old son is just starting Depakote.  he was diagnosed with absence seizures almost 2 years ago (he's had them since he was a toddler though) and has tried lamictal and then ethosuximide.   i felt the etho was working great for his absence seizures- and he did lose some weight- but he had his first convulsion seizure in his sleep 2 days ago.  the doctor now wants to move him to depakote but not sure how effective it will be for his absence.  this morning he is complaining of headaches.... i'd like to talk to other parents like you guys and hear more how your kids are managing this- both medically and personally (school, etc).  Thanks!

Lcm

Hi Lcm!  My son is doing well medically but personally we have seen a change in him.  He seems to not care about school work and I am in constant contact with his teacher about his academics.  Academically she said he is right on track but he is easily distracted and most often will not do class work while in school. This does not happen every day but it does happen a couple times a week.  I have punished him by taking away tv and video games and he does not seem to care.  It breaks my heart to see this change in him and like his teacher said it is unfair  to punish him for something that may be a direct cause from the medcine.  When I spoke to his Neuro regarding these issues she said that she is aware that the med can cause behavioral side effects but she has not really ever had a situation that it did.  I am convinced it is from the meds because prior to taking the meds he did not have these problems in school.  You mentioned that your son had his first convulsion sz, is this something that can occur with children with absence sz?  Have you been told that your child will outgrow epilepsy?  How is your son responding to Depakote?

Dawn

I am so glad I found this site.  My 8 year old son was diagnosed with CAE on 4/8, and began Ethosuximide as I see most of your kids have.  My son decided to do the capsules (he stated that since he can swallow peas whole, after all ;-).  We are into week 2 at 2/250 mg capsules and will work up to 1000 mg in total. Evidence of his seizures had literally begun 3 days prior to his EEG, and although short in duration, it was evident that something strange was going on.  We are unsure how long these have been going on as he began to adjust to his "lost moments" (he called it daydreaming) and was able to maintain a perfect GPA with only a notation that he needs to pay better attention.  So here I am in week 2 and I need to keep reminding myself that the Ethosuxide is ultimately for his benefit - watching his appetite change before my eyes, including sudden dislike of foods that were once his favorites, the loose bowels, the nausea which we were able to stop for the most part by having him take his meds with milk and food.  He has some sleep disturbances but that has pretty much been his MO for most of his life and has always awoken at least 1x per night.   His doctor told us that he will have no restrictions (he plays a lot of sports and is very active) and aims to control 80% of the seizures.  I've also noted he is more fearful of stuff such as disease, for instance; he's always been a pretty deep kid, but stuff like mad cow disease that he just recently saw something on comes up now about once an hour (do you think these carrots are contaminated?  the fruit snacks? etc).  It is just really painful to know your kid is on a mind altering drug see some of the no so great results.  I do want to end my rant on a high note though, and that is if we continue on our best case scenario, this will be a minor blip in his history and all in all, not a big deal.  I am just a mom who is trying to maintain 100% demeanor while battling a not so welcome new neurosis.  As for some of the other posts, he is not having nightmares at this time, though I've seen that they termed  "vivid dreams" as a potential side effect.

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

Hello, my son who is now 9, just finished his 2 year protocol on Ethosuximide.  He has been seizer free for two years.  His EEG last week is normal, so we will begin to reduce med's and take him off.  Ethosuximide worked really well for us.  I gave him 7ml 2 times per day.  For all of you who are starting this process, hang in there. We never experienced  side affects.  Sometimes a quezy tummy in the am.  Seizer begits seizer, so if your child is still having them tell your doctor.  We will now watch our boy, and hope that he is off the med's for good!  Note, I also had absence seizers as a child, and did outgrow them.  Take care. SD Mom

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 in all it took us a year to get her to the right dose. Even her doctor was talking of adding another medicine midway thru this  but we thought we should give it enough time. I had seen many posts which say 2 weeks is enough time to see if the dose is working. From my personal experience I think its not. You should give it more time than that. Also the increase in dosage should be little by little. If there are side-effects split the dose. 

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.

 In Feb 2012 we went for a 24 hr EEg and bingo this time she has outgrown it. She is seizure free now. The doctor will start decreasing her dose from Sep 2012. Hope my story helps someone who is searching for answers. Feel free to reach me at wanttohelpothermoms@yahoo.com Good Luck! Hang in there. There is light at the end of the tunnel.

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