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Son with complex partial seizures - going in tomorrow for 48 hour monitoring

I am new to this site but have been doing research and thought that other people might have some ideas or questions that I should be asking.  My son is 11 years old and has been being treated for complex partial seizures and migraness for the last 2 years.  He takes carbatrol and amitriptyline on a daily basis - at first these episodes were really bad but after going on meds they were under control until a few weeks ago.  His does has been increased a few times because of break-through seizures and because he has grown a lot but the meds had been helping really well.  In fact, since we only started having this problem a two years ago and it was controlled so well on meds we were talking about trying to go off meds next year and see how things went.  I should mention that he had an EEG at the beginning of the episodes two years ago and it came back normal but the pediatric neurologist treated him based on his clinical symptoms. 

Our problems began about 3 weeks ago over the holiday break.  Nothing really different in the world but one night when Dylan went to bed (this is when we typically have problems - right at bedtime or shortly after going to sleep) he had an episode.  Nothing as bad as when the seizures first started but it affected his vision, he was really dizzy, was out of it (did not know what was going on around him), heard screaming noises in his ears and when it was over, less than 2 minutes he was exhaused and went to bed.  This episode that happened about 3 weeks ago has been the beginning of a down-ward spiral.  We started having episodes on an everyday basis, then everyday and are up to 2-3 a day for the last few days.  At first the neurologist only wanted to do a repeat EEG but after Dylan had some vomiting episodes, was not able to walk during/after a few of them (lost the ability to move his legs) and a few other things I finally demanded yesterday that they needed to see him and figure out what was going on.  This whole thing is making him so tired he is really having a hard time functioning - he can sleep all night and still be exhausted in the morning.  His teacher started calling a few days ago concerned about his exhaustion at school.  Then in addition to the evening episodes we started having episodes at school the last few days.  Always when he is concentrating on something really hard - art class while doing a drawing, while reading and then while taking a test.  In addition to the school episodes, still having them in the evenings and had another one around midnight last night where he was totally asleep than started talking, almost yelling - he made no sense and started throwing his arms around.  I tried to wake him up by shaking him and calling his name but nothing.  It lasted a little over a minute and then he finally stopped moving and talking nonsense.  I shook him he finally answered me and said he was sleeping - I asked him if he remembered something just happening and he had no idea what I was talking about.  The doctor is admitting him for a 48 monitoring tomorrow.  The docs still seem to think that it is complex partial seizures occuring and that maybe the meds are just not working any longer but they just want to be sure nothing else is going on.  I am trying really hard not to think bad thoughts but what if something else is going on.  He was so controlled with these episodes for almost 2 years on Carbatrol and then we get into this mess for the last 3 weeks that seems to be getting worse each day.  I am scared and almost afraid for the monitoring.  What if nothing comes up?  What if they find something else in his brain?  Anyone have any insight or been through something similiar please let me know.  Any information would be greatly appreciated.  Thank you -

Comments

Re: Son with complex partial seizures

I'm sorry it has been such a scary time for you.  How did the monitoring go?  Did they learn anything more about his condition?  My son has had complex partial seizures for over 2 years and they almost always occur at night.  Medication has never completely controlled them, they have just decreased in frequency from about 15 per month to about 5.  It makes no sense to me!  I understand about being scared and I have had to trust that God knows what is going on and will help us through this, but it is very difficult at times.  Hang in there.  I hope for both of our kids that they can figure out lasting help soon.  Feel free to keep me posted on his progress.

Re: Son with complex partial seizures - update

Just an update - the monitoring was not a great experience but at least it is over.  They ended up keeping him for 3 nights because they were trying to catch him having a seizure.  I didn't have much hope for it because he usually has them when he is really tired after having a long day and when you are sitting in a hospital bed doing nothing for 3 days the routine is so different.  So no luck with catching any seizures - I thought when we left that it was all a waste but I did hear from the doctor and they did see abnormal brain activity when he was sleeping so they know he is having seizure activity.  So we increased the meds and are going to see how it goes.  Not sure I like the idea so much because it seems like a lot of meds for an 11 year old but we will see how it goes. 

Re: Son with complex partial seizures - going in tomorrow for 48

Hello -

This has to be a really hard time for you, I'm so sorry. To be perfectly honest, I'm also new to this site and hoping to learn more about epilepsy. I am currently working on developing a book for kids about epilepsy, and would love to know more about your journey alongside your son, Dylan. I know this seems odd, but would you be willing to talk to tell me more about your family's story? It would be for a good cause, the book is educational and aims to teach young kids about what some of their peers go through, living with epilepsy at a young age. I would only take a few minutes of your time, but please feel free to say no, I know you have more than enough on your plate. If you respond yes, I'll send you my email.

Zac

Re: Son with complex partial seizures - going in tomorrow for 48

Hey there I have a son who is 11 and has also been having seizures for the last 2 years.  I would love to know when you complete your book as there is not much out there for young children who have seizures.  I know my son doesn't like anyone to know that he has seizures but maybe if there was a book that would help to explain it to his peers then maybe he would feel better about it. 

Re: Son with complex partial seizures - going in tomorrow for 48

I would love to keep you informed about the book's progress. I'm actually working on the "fictional" portion of the book, about a young boy or girl living with epilepsy, which will be complimented by a non-fiction section with facts and information about epilepsy. Would you mind sending me an email at zbalus@gmail.com ?? I'd love to ask you a few questions about sending your son to school, what an average day is like for him -- those sorts of things. There is no pressure to respond, of course.

Zac