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Old 12-04-2004, 10:00 AM   #1
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buliem HB User
Unhappy Neuro Visit

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)

 
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Old 12-04-2004, 11:38 AM   #2
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healinggarden HB User
Re: Neuro Visit

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

 
Old 12-04-2004, 12:03 PM   #3
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buliem HB User
Re: Neuro Visit

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

 
Old 12-04-2004, 01:15 PM   #4
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kayakmom HB User
Re: Neuro Visit

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...
__________________
mom of 2 teens who have battled seiuzres.

 
Old 12-04-2004, 01:41 PM   #5
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buliem HB User
Re: Neuro Visit

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

 
Old 12-04-2004, 01:50 PM   #6
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Location: Dayville, Ct. USA
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kayakmom HB User
Re: Neuro Visit

Yes, it does sound like you are in the best place! I have known others who have used the L Carnitine as well. Often with mixed results....

Keto is hard, but I know many who have amazing results! You have to work hard through it, though. We have not tried it since I have teens and they are not interested in trying it at all!

Hoping the med can give him more control or that things calm down soon for Patrick!
__________________
mom of 2 teens who have battled seiuzres.

 
Old 12-05-2004, 02:56 PM   #7
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Join Date: Oct 2004
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healinggarden HB User
Re: Neuro Visit

Quote:
Originally Posted by buliem
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
I'm sorry about all that

I hope it gets better! If the teacher doesn't act nicer towards him, could she be discriminating? I had to switch classes in high school due to this reason. Maybe if she doesn't let up, you could move him to a new class if there is a new teacher?

I wish your family the best of luck!

Kat

 
Old 12-05-2004, 09:23 PM   #8
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buliem HB User
Re: Neuro Visit

Quote:
Originally Posted by healinggarden
I'm sorry about all that

I hope it gets better! If the teacher doesn't act nicer towards him, could she be discriminating? I had to switch classes in high school due to this reason. Maybe if she doesn't let up, you could move him to a new class if there is a new teacher?

I wish your family the best of luck!

Kat

Kat,

I really think the teacher is doing her best. The school is very small, about 100 students. It is more a matter of me not communicating the severity of the problem I think. We are all so new to this. Just gotta play it by ear I suppose. I haven't run into many teachers that really had the kids best interest at heart. I think Patrick's is an exception.

That said I'm very sorry you had such a bad time. It's so very unfair.

Julie

 
Old 12-08-2004, 08:55 PM   #9
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hannasnana HB User
Re: Neuro Visit

To Healinggarden,
What are "hidden" siezures.
My daughter has been suffereing with migraines since March. She is 16 going on 17. She has had all the regular tests, a sleep eeg, bloodwork, ct brain scan, and an MRI. The nero said everything is normal. Although tonight my daughter mentioned to me that she misses moments in time. She has one to 2 minutes of spacing out. She doesn't remember anything during that time. AFTER she started having the migraines she started to have memory loss and brain fog.

She was having migraines almost 7 days a week 24 hours a day until the Nero put her on Topomax.

She was having all these other problems before the Topomax.
Just wondering if she is having mild siezures.....

 
Old 12-08-2004, 09:01 PM   #10
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hannasnana HB User
Re: Neuro Visit

to the moms here,
Has anybody gone for counceling. I'm find it so difficult to deal with all these issues from my daughters migraines. She did NOT JUST have migraines. It has somehow changed her body chemistry and she is experiencing short term memory, brain fog, her comprehension is off.

I don't know what to make her do. She is nausiated and throws up sometimes from the medication she is on. She is fatigued and can't focus for very long. She is homeschooled. We have put her academics on hold for now until we get a handle on her health. She continues one of her favorite groups (civil air patrol) but at great cost to her health. She gets ill after doing any marching, or physical exercise.

I'm tired, and frustrated........feeling helpless because we have done all we can do........and she is still ill.

Last edited by hannasnana; 12-08-2004 at 09:05 PM.

 
Old 12-09-2004, 03:45 AM   #11
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Join Date: Dec 2002
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kayakmom HB User
Re: Neuro Visit

Hannasnana, I am so very sorry that she is going through so much! We also homeschool our son. He has gone through times of cognition issues, memory loss etc.

If you feel you are needing counseling GO FOR IT! THIs is the best gift you can give to yourself and to Hannah. Next, keep advocating for her best health. Usually migraines do not make one loose time. I would run to a new opinion and get her help! It is so frustrating when all tests are normal since that does not always say what is going on! It is possible to have seizures and still have a normal EEG if there is no seizure during the EEG>
There are many migraine variants and you can have both seizures and migraine. My kids have both.

I am so sorry that this is impacting her life so drastically. I hope that you can find a way to continue her Civil Air patrol safely.

Hang in there
__________________
mom of 2 teens who have battled seiuzres.

 
Old 12-10-2004, 07:46 AM   #12
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buliem HB User
Re: Neuro Visit

Hannasnana,
I'm sorry you and your daughter are having to go through this. Kayak's right, sometimes you can have seizures that are hidden, and some that don't show on the EEG. My son's E has been picked up on an EEG but he does have some that you can't always see. It makes it hard for teachers to understand. His cognition and memory have suffered at times too. The neuro says its the seizures but I'm sure it's a combo them and his meds. School can be very difficult for him at times. He almost lost his line in the school Christmas production this week because he kept missing his cue. He was devasted. I had to explain that he is probably seizing and missed it even if you don't see it. Having 100's of moments of loss of consciousness each day can make it really hard to learn.

Anyway I understand you considering counseling. I sometimes feel like I'm going to lose it. The only thing that is really stopping me is that I can't bear to sit in another doctor's office at this point. I'm really all so drained from it all.

Just know you aren't alone.

Take Care,
Julie

 
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