Help! New and need info for active child - Epilepsy Message Board

jake's-mom · 06-08-2004, 05:42 PM

I have posted a couple of times in response to others, but I have several questions of my own. Background: My 7 year old son has been diagnosed w/ Epilepsy. He has Absence seizures and has had several Tonic-Clonic Seizures since April 4th. He started Lamictal on May 8th and is up to 30mg twice a day. I understand from our Dr. that it is common to have breakthrough seizures until he gets up to at least 120mg. My concern is the seizure he had today was different than the others. He was swinging outside and just froze. He stared into space and blinked his eyes over and over. He was stiff, but not jerking and didn't fall from the swing. After I laid him down, he continued this activity for about 4 minutes. This is longer than his last seizures. When he seemed to regain consciousness, he couldn't speak. He just grunted. He wouldn't speak words, just nodding and grunting. It took 25 minutes for him to get a word out, and then he just slept. He has been sleeping it off for about 5 hours now, which isn't uncommon after a seizure for him, but I haven't heard back from the Doc and wondered if anyone else has experienced this. Could this change be caused by the medication?

I am also concerned because he has never had a seizure while active. It is usually while at rest. I haven't restricted much activity because he is so athletic. He would go crazy just sitting around the house all summer. He didn't fall off the swing, but we have been swimming, playing baseball, etc. all the time. How can I let him go swimming now?

Does anyone else have children on Lamictal for Generalized Seizures? I don't know if he is having side effects from the seizures or the medication. He just isn't himself anymore. I am so worried.

Thanks for any feedback. Wendy

LisaGuthrie · 06-10-2004, 08:28 AM

Hi Wendy,

My name is Lisa and I'm a Jake's Mom as well. My Jake in 2.5 years old and has been on Lamictal since the end of late Aug, 03 for Complex Partial Seizures with rapid secondary generalization

Neuro speak. Mom speak, his start as CPs and ended with Tonic/Clonic's or Grand Mals.

I had read a couple of your responses and simply have not had time to get back to you. What you discribed *and remember the I am not a neuro* is not med related, but possible a progression of your son's epilepsy. My little guy started seizing at 10 mths (however thinking back, they may have started at 7mths and we didn't catch them) and we have seen several changes in how and when the present.

There are some people who only have the Clonic part of a grand mal seizure (going rigid - or stiff). That could be what you saw and also explain why he couldn't speek for a bit following, his muscles being very tight and taking a bit of time for them to fully relax and recover. The after seizure part is called postictal - meaning just that *after seizure*, this is what you are seeing when he needs to sleep.

As far as being an active 10 year old... please don't stop his life because of this. There are ways around his needs and your fears. For swimming, don't stop him from going in the water. However, only allow him to swim when you or another person (able to pull him out if need be) is with him. You should be doing this anyway... right?

Let him play baseball, if he's playing on a little league team and you are not always able to attend practice or games, make sure that the coaches know what's going on and how to handle a seizure should he have one.

Does he have auras? I also have a 15 year old daughter, Jenny, who has E. She gets a ringing in her right ear and then her vision will start to dim before she has one. These little warning she gets are called Simple Partial Seizures. They are kind of like a small tremor before a big earth quake so to speek. She was treated for years for ADD/HD (which she does have) without our knowing that a big part of her issues were Absent seizures. Not until she hit that whole monthly woman's cycle did she have a grand mal.

Talk to him about what he remembers just before he goes away (how Jen refers to a sz). For example, if he understands that the spots in his vision or maybe a smell that only he smells, colors seeming more vivid, or a ringing in his ears etc could be a warning signal, as a mom I would feel much better. He could get out of the swing, leave left field, get out of the pool - whatever before one catches him.

I know I'm all over on my info here, sorry about that... as far as Jake not being himself. There were are a few things that we noted with our Jake after starting Lamictal. Insomnia, Obsessive behaviors, constant movement... But, my Jake is non-verbal, so I can't ask him how he really feels, which breaks my heart and why I come to this board!

There are a coulpe books I will get you titles to later from the house that were real God sends to us. They cover a great deal of the terms, treatments, and possible outcomes for children with E.

Keep us posted! You and Jake will be added to my pray and meditations list.

One last thing... Take care of you Wendy. It is very easy to get so caught up in Jake's issues that you may forget to eat well, or get enough rest, you may find yourself spilling your fears and stress into other relationships.

Take care of Mom, so you can in turn better care for your little guy! Been there - done that!

Oh, BTW - Welcome to the board! Hate that you had to find us by going through this with Jake, but you will find being able to talk to others will help you better manage!

Love and light,

Lisa and kids

jake's-mom · 06-10-2004, 10:13 AM

Lisa, thank you so much for your message. It's funny that you should mention about taking care of me, because my husband is upset with me for the same thing. I cannot sleep. I stay up at nights and read information on Epilepsy and seizures online for hours at night. It's so confusing. I have lost 15 pounds in 2 1/2 months. He's not too upset about that though. Just the all night computering.

Jacob is 7, almost 8. You may have read my response to the 10 year old question which was confusing.

I have tried to talk to him about auras, but he doesn't remember anything. I think he may be having them though, because 3 times he has gotten out of his seat and walked over to me to have a seizure. The only thing he has come up with is that he felt a little dizzy before getting on the swing the other day. We decided that he would make sure he was in a safe place if he ever felt dizzy like that again.

I attend all of his practices and games and I do swim with him if he swims. But I am still afraid every time he gets out of my reach. I am driving him crazy. He is never without a parent anywhere. For the last few weeks of school this year I kept him home everyday he seemed tired, and I even came up for lunch on the days he went to school. Only because he didn't have as much supervision in the cafeteria as in the classroom, and he did have a grand mal during lunch one day. He fell back from the lunch table and hit his head on the tile floor. The kids sitting next to him weren't prepared for that. And neither were the lunch ladies. We hadn't even seen our Neuro yet at that point and our Ped thought he wouldn't ever have another seizure. And if he did, it would be within the first 2 hours after waking. This hasn't been the case.

I am rambling, but our Neuro called yesterday and said the same thing you said. This is probably just the progression of the epilepsy. It sounds reasonable now, but I just have to get out of "panic-mode" some how.

Thanks for all of your support!!

God Bless!

Wendy

kayakmom · 06-10-2004, 02:36 PM

My son, now 13, was diagnosed at age 7 and was very active!! It sure sounds like a complex partial to me. When seizures start in the frontal or temporal lobe that speech arrest is possible. My son will wake from his seizures in sleep and only grunt or growl for awhile. Later on he will tell me he was talking the whole time...

Hope the neuro gets back to you soon!