Child w/absence epilepsy?

[5 'LIL *TWINKERS*]

Not sure if I am asking this ? in the right spot but.....

My ds(8) was diagnosed with absence epilepsy last Nov. Absence epilepsy is a form of seizure disorder that involves staring into space, "spacing out" is what it looks like to me. The spacing out is the seizure. It is non-convulsive.

He can be doing something and all of a sudden he stops and has this look on his face like he is staring through you for up to 10 seconds --zombie like. He was having these space-out unconcious states that only last seconds, up to 100 times/day. Missing out on tiny chunks of his teachers instructions, etc.

We have him on ethosuximide (zarontin--is the name brand) which at the beginning, the staring spells completely disapeared. He has grown so much and has put on more weight, that now he is having the staring spells again (at least a handfull/day, those are the ones I see). Our ped. thinks its because of his growth. We keep getting bloodwork done to see what his theraputic level of meds are and our ped. keeps increasing the dose. We just increased again today. Im hoping that this increase will subside the staring spells so he can be seizure free at school that starts next week. He is an excellent student, and I don't want this to effect his school performance.

He has also started playing rocket football this year, with the ok from the ped. At practice, he had one of his staring spells. Its heartbreaking to see him having to deal with this and how people in his daily life don't understand or even have heard of the disorder. When you hear of epilepsy, you think falling down convulsive seizures, not staring off into space.

Just wondering if anyone has dealt with this or experiences with the meds. He is on 10ml of ethosuximide now. The theraputic level they like to see is between 40 and 100. His last blood test last week was at 62.

 

[EdiePA]

Yes, I have heard of absence epilepsy. With a child, and especially during growth spurts, it can be a real challenge to titrate their medication to a therapeutic dose. As a pharmacist, it sounds to me like the doctor is doing everything the right way.

Hugs,
Edie

 

[legalsea]

I agree, it sounds like you are doing all you can.

I actually had a tennis partner back in college who had this disorder. He would usually have at least one staring spell during each match. We players knew that when he suddenly stood still and was staring off into space that the game was to be halted for the few minutes until he 'came back'.

I do not recall if he was on any medication at that time (mid 1970s). Otherwise he was in good health and a fine student.

 

[Pooh_Friend#1]

This post hits really close to home. My nephew (4) has a bunch of the different types of seizures, the convulsive one scare the heck out of me, but he also has the ones where he just stares into space. He has to take 14 pills a day and is currently doing the Ketogenic diet. He use to be on zarontin. What my sister has discovered is that he is too sensitive and cannot take generic medication. If he takes the generic his seizures get worse. Have you tried the name brand?

 

[Disney Doll]

Sounds like you guys are on top of this and I commend you.

About the only thing that jumps out at me to consider is if you guys are "chasing" the dosing of the medication. Your son is growing and you are changing the med dosing based on that. But I wonder if the dosing can be changed to be a little ahead of his growth.

For example (and I am going to use totally random numbers here as I have no idea about the dosing of this medicine):

Child who weighs 50-75 lbs. dose = 1mg
Child who weighs 76-100 lbs. dose= 2mg

Well, if your child weighs 73, 74 or 75 lbs (the upper weight range of the lower dose), could the MD start the next dosing then (2 mgs. if you were using my example above), assuming that within a couple of months your child is going to be 76 lbs. or heavier, since he's continually growing? This idea, of course, is very dependent on the fact that being a little "overdosed" (medically controlled) would not create any other health issues. It might make that "transition" period, where he has the absence seizures because the new medication dose has to develop a therapeutic blood level again in his larger body, disappear, or maybe instead of being a week long, the transition period would only be a day ot two long.

Something to consider & perhaps discuss with the MD....

 

[cabanafrau]

I had no idea what the correct name for it was, but I found out the hard way that some seizures present this way as a chaperone on a school field trip. I found out afterward that meds had to be adjusted after the incident because of a growth spurt. That's got to be so hard to deal with when kids are in the stage where they're growing like weeds.

Best of luck to your DS and his parents.

 

[ChrizJen]

This post hits really close to home. My nephew (4) has a bunch of the different types of seizures, the convulsive one scare the heck out of me, but he also has the ones where he just stares into space. He has to take 14 pills a day and is currently doing the Ketogenic diet. He use to be on zarontin. What my sister has discovered is that he is too sensitive and cannot take generic medication. If he takes the generic his seizures get worse. Have you tried the name brand?

We have friends whose 2 yr old son has several types of seizures as well. They were alerted when he began having the convulsive seizures, but were told at the time that they were just febrile seizures. But they kept recurring, sometimes 8-10 a day. When they got him in to the neurologist, they discovered that he had been having the absence seizures as well. Sometimes upwards of 70-75 seizures a day. I know that they've had some trouble finding the right meds and the right balance, so I'm familiar with your struggle. They said that the most difficult thing is that he's only 2 (and he's also non-verbal, due to other issues), he's not able to alert them to when a seizure is coming on. They can tell when he's had one, because he always seems "worn out" and clammy. They docs said that as he gets older, he'll learn the warning signs and be able to communicate when one is coming on.

I don't really have any advice, just I know it's difficult to see your child suffer from any illness. It's a helpless feeling. Good luck, and hopefully they'll be able to find a good balance of meds to get him on track.

 

[dislal]

My DD11 friend has these type of seizures, and her dad also had them when he was younger. It is interesting that my DD's friends Dr didn't give her any medication and told them she would grow out of them like her father did.(they told me by the time he was 18 he didn't get them anymore) The only time they worry about it is when she is swimming one of the parents is always by her side.

I wish you the best of luck figuring this out with your son.

 

[SpecialK]

I had a student who had this type of seizure. I was teaching jr. high at the time, and she wasn't diagnosed until she was well into high school. It had a tremendous effect on her school performance. Glad to hear you caught it so young.

Your son's teacher could be a tremendous ally here in keeping an eye out for any seizures that happen during the school day. Hoping all works out for him.

 

[5 'LIL *TWINKERS*]

Thank you so much for all the comments. Alot of the time I feel like we are the only ones dealing with this. It feels really reassuring to hear of others with similar experiences. I wish I knew of some in my real life (outside of the internet, lol)

One thing I am kinda frustrated with, is our ped. seems to be "chasing and not getting ahead with the dosing meds" (great way of explaining it disney doll!). I am definitely gonna mention this to her.

I really feel like we are all on the right path of doing things, I just wish the dose would finally settle them down already.

I was too, told that it would hopefully be outgrown by the teenage years.

I really appreciate all the comments.

 

[dopeysgirl01]

My dh has had epilepsy since the age of 5, he's now 44. It took a very long time to get it under control and he has tried almost every brand of meds out there. Like your son, he can only use the brand medicine Dilantin. He can't use generic. I always have to remid the dr. to write brand medically necessary. It's a very scary thing to deal with and my thoughts are with you. On a positive note, my dh is doing great now. He went 10 years without a seizure. The most important thing that I've noticed with him is not to let hime get too run down or tired. I also try to make sure he eats well. When I was teaching I had a student that had absence epilepsy as well. The other kids in the class had no idea and couldn't really tell anything was happening. Please feel free to pm me if you have any questions that I might be able to answer.

 

[Snoopymom]

The parents board on the communities on the http://www.epilepsyfoundation.org/

is a great place, knowledgeable and caring parents, and it really helps to know you're not alone.

DS is 9 and has left frontal lobe seizures. He's on trileptal and I don't have time to write, but we've been chasing meds and struggle with the right dose. It's difficult because the meds make him gain or lose weight, then we adjust, and then his weight is effected again, and then you have regular growth spurts, very tough.

Hugs!

 

[daughtersrus]

My DD's seizures are very similar. (She also has a rare genetic disease so she has other medical problems as well)

The first medication that the Ped Neuro tried her on was Tegretol. The day after she weaned up to the full dose, she developed a HORRIBLE allergic rash and had to quit "cold turkey". From there, she was put on Neurontin. She did OK with it but the seizures never completely went away. As she got bigger, they increased the dose. It came to a point where she was so lethargic that she had to be taken off of the medication. We went to Topamax. Again, as the dose needed to be increased, the side effect began to show.

She has been on Keppra for several years now with NO side effects.
We believe that is because she weaned onto Keppra VERY slowly while at the same time, was weaning off of Topamax. As I said, my DD has many other issues as well, so sadly she will never be "normal" but I understand how heartbreaking it is to see your child have a seizure.

You said that your Ped is managing his care instead of a Ped Neuro. You might want to consider taking him to a Neuro just because sometimes they are "up" on the new medications/treatments whereas a Ped may not be. There may be something that would be a better fit for you son.

 

[NHdisneylover]

My DD11 friend has these type of seizures, and her dad also had them when he was younger. It is interesting that my DD's friends Dr didn't give her any medication and told them she would grow out of them like her father did.(they told me by the time he was 18 he didn't get them anymore) The only time they worry about it is when she is swimming one of the parents is always by her side.

I wish you the best of luck figuring this out with your son.

I know someone who outgrew them as well. We had friends in Michigan whose son had these seizures. He was first diagnosed as a toddler. I remember them being frustrated with how the number of seizures would sky rocket whenever he had a growth spurt (pretty often for young children of course) until they could readjust the medication. When he was 8 the number os epsidoes started to steadily decline and hten he stopped having the siezures all together. The yweened him off of meds while watching him lcosely and he never had another seizure. He is now 11 I do not know if there are certain kids doctors can know will outgrow thes and other kids doctors know cannot--or if it is kuck, but I thought you might like to know that it CAN happen Good luck with your son.