Neuro Visit - Epilepsy Message Board

buliem · 12-04-2004, 11:00 AM

We took Patrick to the neurologist yesterday. The EKG was fine thank God. However he said that since we are still seeing a couple of seizures a day, (the obvious ones with the eye rolling) Patrick is still having hundreds a day that we don't see. No more big ones this week except for the suspected Grand Mal he had in bed on Monday.

This is all making school really hard for him. I questioned him about the effects of the depakote on his mind. Patrick keeps forgeting how to do things that he's known how to do for the past 2 years. He said that yes of course all AED's slow down the brain but the difficulty in attention etc is a result of the seizures. He said he is probably reaching a developmental milestone and that, coupled with the seizures is irritating his brain.

I really don't know what to believe. My sister has mild bi-polar disorder. She took depakote (at an even smaller dose than Pat) several years ago. She stopped because she said she couldn't think straight or at all.

My son is very bright and all this is so very frustrating for him and us. He wants to keep up with his classmates. The poor kid even offers to give up his recess to finish his work. Homework can be an exercise in frustration when he fails to remember something or understand something he's done hundreds of times. Forget math word problems that require advanced critical thinking skills. He just can't grasp it. He ends up in tears. It wasn't always so.

The teacher will punish him for falling to stay on task or work fast enough sometimes. I don't think she's aware that just because she isn't seeing the obvious eye rolling all the time that doesn't mean he's not seizing.

His doctor wants us to have a blood level check first thing in the morning. The morning is the only time we have seen big seizures although he does have the Petit Mal in the afternoon in between doses. He'll have to probably up his dose and check blood levels again along with another EEG. He's getting near the limit for his weight so if the depakote doesn't work we'll have to add another med. Unfortunately the neuro said that nothing works as well as depakote for Pat's type of E. I'm really scared for my guy.

Sorry this is so long. I really needed the vent.

Julie (Mom to Patrick, 10)

healinggarden · 12-04-2004, 12:38 PM

Quote:

Originally Posted by buliem

We took Patrick to the neurologist yesterday. The EKG was fine thank God. However he said that since we are still seeing a couple of seizures a day, (the obvious ones with the eye rolling) Patrick is still having hundreds a day that we don't see. No more big ones this week except for the suspected Grand Mal he had in bed on Monday.

This is all making school really hard for him. I questioned him about the effects of the depakote on his mind. Patrick keeps forgeting how to do things that he's known how to do for the past 2 years. He said that yes of course all AED's slow down the brain but the difficulty in attention etc is a result of the seizures. He said he is probably reaching a developmental milestone and that, coupled with the seizures is irritating his brain.

I really don't know what to believe. My sister has mild bi-polar disorder. She took depakote (at an even smaller dose than Pat) several years ago. She stopped because she said she couldn't think straight or at all.

My son is very bright and all this is so very frustrating for him and us. He wants to keep up with his classmates. The poor kid even offers to give up his recess to finish his work. Homework can be an exercise in frustration when he fails to remember something or understand something he's done hundreds of times. Forget math word problems that require advanced critical thinking skills. He just can't grasp it. He ends up in tears. It wasn't always so.

The teacher will punish him for falling to stay on task or work fast enough sometimes. I don't think she's aware that just because she isn't seeing the obvious eye rolling all the time that doesn't mean he's not seizing.

His doctor wants us to have a blood level check first thing in the morning. The morning is the only time we have seen big seizures although he does have the Petit Mal in the afternoon in between doses. He'll have to probably up his dose and check blood levels again along with another EEG. He's getting near the limit for his weight so if the depakote doesn't work we'll have to add another med. Unfortunately the neuro said that nothing works as well as depakote for Pat's type of E. I'm really scared for my guy.

Sorry this is so long. I really needed the vent.

Julie (Mom to Patrick, 10)

I'm sorry about your sons and your situation

Venting is a necessity to life!

I had "hidden" seizures no one could notice in school. No one believed me since I didn't take medication (I'm Mrs. Allergy when it comes to practially any kind of medicine) School was very hard for me too.

I'm pretty good in history and literature, I couldn't do math. My math teacher in high school made fun of me in class during tests because I'd sit there having an absence seizure and she said I was on drugs

I had to drop all my advanced classes to average and I basically graduated by the seam of my pants.

If I was you, take your child out of public school. Homeschool him, put him in an academy, anything but public schooling. It's understaffed to have anyone to help. I asked to be removed but my parents didn't. I almost dropped out because of my seizures.

You could meet the teacher and talk to her about your sons condition. Print her out a page of symptoms and say if she sees any of these he's probably having a seizure. I had one teacher who taught me history in 8th grade, she knew I was epileptic. I sat next to her during class and she taught in a way I could comprehend. She was one pea in a pod, I've never had a teacher who cared that much.

I hope your situation improves and you'll get some answers. Encouragement is the best thing

I was alone to swing those years of high school and epilepsy together. Everyone just claimed I was "moody". Oh yeah, complex partial moody

Kat

buliem · 12-04-2004, 01:03 PM

Kat,

Thanks for the suggestions. Patrick was in public school before he was diagnosed and it was a nightmare. This teacher is really very patient for the most part. I just don't think she understands all the effects of the disease and meds. He goes to a private Montessori School and there are only 22 kids in the class 1-3rd graders. One teacher and a full time assistant. Patrick should be in fourth but when we moved him there at the end of second grade he was so far behind they placed him with the 2nd graders for reading and writing. This school actually has much higher standards than public. The public school was going to let him advance but this school is so much better for him. He was always pretty good at Math so this is heartbreaking. Thankfully he's doing much better in reading. He took the standardized test last year and scored at the top of all subjects except for the ones that were given orally. We guess he was seizing and didn't hear everything and/or missed parts. He didn't miss a single math computation problem and scored in the mid-high 90s on the reading and language. Anyway it is very hard to know what to do discipline wise. We don't want him to use his E as an excuse.

I did print out a bunch of info on behavior and cognition for kids with E and gave it to her yesterday. Hopefully she'll be a little more patient. I can pretty much go in there and talk to her anytime.

I have no idea what we will do for middle school. Patrick is an only child. I really don't think I can homeschool him. He loves the social aspect of school and he isn't always they easiest child to teach at home. He loves to argue with us.

I realize he may need accomodations to be successful in school. If he needs them in college (if he goes) he'll need to be identified before high school so he can qualify. Glad all these decision are a few years off.

Thanks again for the advice and support.

Julie

kayakmom · 12-04-2004, 02:15 PM

Julie, I am so sorry that you and Patrick had such a hard neuro visit.

Have you looked into trying the Ketogenic diet or VNS? Has he been seen at a comprehensive epilepsy center? sometimes they can do better than a regular neuro....

It must be very frustrating for both of you! He has to fight the combo of constant seizures and the medication supressing things...So frustrating. I hope that the teacher will understand when you give her the info...

buliem · 12-04-2004, 02:41 PM

Quote:

Originally Posted by kayakmom

Julie, I am so sorry that you and Patrick had such a hard neuro visit.

Have you looked into trying the Ketogenic diet or VNS? Has he been seen at a comprehensive epilepsy center? sometimes they can do better than a regular neuro....

It must be very frustrating for both of you! He has to fight the combo of constant seizures and the medication supressing things...So frustrating. I hope that the teacher will understand when you give her the info...

Thank you. He goes to the Children's Hospital Epilepsy Center. E is all they do. That and migraines. His doc is the Director of Neurology for the hospital and the founder of the center. He specializes in Childhood Epilepsy and Autism. I don't see how we can get any better. However, he's so busy that when I went to make an appointment to see him in a month I couldn't get Pat in until Jan 31st. They were doing overbooks which is how I got him in after his first big seizure. Now they tell me they will no longer by accomodating people that way and to take him the the ER if he has another Grand Mal.
.: Sigh.:

We actually asked him about giving Pat some supplements. L-Carnitine was one I mentioned. He said he'd rather stick with science but okayed the L Carnitene. He wrote us a prescription for it. We do have a bottle that says it's pharmaceutical grade but he was having none if it. Things aren't so bad yet as to give up on meds I guess. The ketogenic diet seems like it would be really hard to deal with.

I don't know all that much about VNS. We have a PPO. They pretty much go
along with what the doc orders but some things aren't covered. We have a rather high deductible too.

I guess we just have to be patient. Relatively speaking this is pretty new to us since it took so long to be diagnosed. I just feel like he's been suffering and has been misunderstood for years. Now that I know what's wrong I want to make it better.

Thanks Again,

Julie