Hello!

[Amy]

Hello everyone!

Happy new year to you all!
I'm Amy. My sweet 9 yr old son has been having seizures. He is on valproic acid for last 3 days & is so dozy and sleepy all the time. Is this common?

I'm feeling very depressed & unable to digest the seizure scene. He has partial cplx seizure. Any feedback on the medicine would be greatly appreciated.

Also, wondering how to cope up... I'm very depressed. I hate to keep sedating a happy active child & make him sleepy & inert all the time. Feeling helpless and miserable. I'm glad to join this group.

Thanks for reading!
Amy

 

[RobinN]

Hi Amy
Welcome to CWE! I moved you to your own thread so others can stop by and say hi to you.
I have a daughter that has also been having seizures. She is 16. We tried four meds, and the side effects for her were worse than the seizure disorder. We have seen vision loss, suicidal thoughts, rash, fever, sleepiness, itchy skin, muscle aches... My daughter has tonic clonic seizures, so getting them under control is very important. Right now we are doing a combination of nutritional changes and supplements. One thing you have to remember... people do tend to come to forums such as this because what they are doing isn't working. There are many folks out there that find answers. But for those that don't ... Bernard and Stacy began this great forum that shares alternative methods. Ones that you just might not hear about from your traditional medical group.

It is a terrible place that you are in. I was there too. The best thing for me was to get knowledgeable about the disorder. Your son was fine for 9 years I presume. You need to figure out if possible how to get him back to that state of health. One really powerful way is through dietary changes. There is a lot of information about how certain "foods" can cause seizures. Haveing a start point that begins with a clean slate certainly feels better to me. This isn't easy. For me the teenage years are terrible with diet. Yet you can also teach your son to be proactive in his care. He is certainly old enough to help you out.

You took the first step and I think you will find that this site will help you cope. Ask your questions and someone will be along to answer them.

 

[Bee91]

Hello everyone!

Happy new year to you all!
I'm Amy. My sweet 9 yr old son has been having seizures. He is on valproic acid for last 3 days & is so dozy and sleepy all the time. Is this common?

I'm feeling very depressed & unable to digest the seizure scene. He has partial cplx seizure. Any feedback on the medicine would be greatly appreciated.

Also, wondering how to cope up... I'm very depressed. I hate to keep sedating a happy active child & make him sleepy & inert all the time. Feeling helpless and miserable. I'm glad to join this group.

Thanks for reading!
Amy

Hi Amy!
I've never been on valproic acid, but for a lot of seizure medicines, that is a common side effect. It usually gets better within a week or two...I'm on Klonopin and Topamax and both make me very sleepy and make me act a little strange. I don't get sleepy anymore (except when my dose changes) It usually just takes some time to adjust. Just remember, the benefits of the medication are supposed to out weight the side effects. It is probably still too early to tell, but how is it controlling his seizures?

And for you, I hope you feel better!! He can live a normal life! Seizures won't slow him down! Especially if you find the right medication to stop the seizures 100%.

Feel Better ,
Brandi

 

[RobinN]

A great place to begin your search would be to read this thread:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

 

[Amy]

my story continues...

Robin & Brandi, My sincere thanks for your replies. To tell a bit more about my son, he happens to have high functioning autism too. What does it mean? He has speech delay, though he is very intelligent with high IQ. So, he can't tell me exactly what is going on in him, when he is abt to get a seizure / or during the episode. He can talk and express most of the things, using 1-2 words at a time. But, these kind of episodes ... he couldn't tell me anything abt it. He somehow reaches me or dad, right before it starts. But he is unable to say anything. I can quickly sense the difference.

Here are my questions:
I'm longing to hear from a person who goes thr it, how does it feel to a person who gets seizure? Does it hurt badly somewhere?
Would he/she be conscious during the seizure?
Can you understand other's reaction etc during seizure or become unconscious totally until you wake up?
Can you sense beforehand that you are going to start getting a seizure?
If yes, is there a way to prevent it by doing something before it becomes too late?

My son falls asleep right after seizure ends for an hour or 2. When he wakes up, he complains of head ache. He couldn't tell anything more. It breaks my heart.

Thanks for your support!
Amy

 

[RobinN]

well well well....
I have a son with HFA too.
Rebecca was speech delayed.

Rebecca doesn't usually know what has happened. It doesn't seem to hurt her. Only if she falls and hits her head. She knows it has happened because of the people around her. The school is getting much better about not calling 911. That is very scary to wake up to. She also complains about a headache, but when she feels better she wants to head back to her classes, or just to move on with her day. She sometimes understands others reactions, and hates it when they hold her down, or do something that isn't comfortable. Rebecca does not remember what happens before hand so it is hard to find out if she is having any auras. Some of her friends do mention dizziness, and a stomach ache. So I am watching out for these.

Some people are conscious during a seizure. There are about 40 different flavors.
Many people have auras, and I am sure they will be along to explain.

Have you heard of Stan Kurtz?

 

[Bee91]

Robin & Brandi, My sincere thanks for your replies. To tell a bit more about my son, he happens to have high functioning autism too. What does it mean? He has speech delay, though he is very intelligent with high IQ. So, he can't tell me exactly what is going on in him, when he is abt to get a seizure / or during the episode. He can talk and express most of the things, using 1-2 words at a time. But, these kind of episodes ... he couldn't tell me anything abt it. He somehow reaches me or dad, right before it starts. But he is unable to say anything. I can quickly sense the difference.

Here are my questions:
I'm longing to hear from a person who goes thr it, how does it feel to a person who gets seizure? Does it hurt badly somewhere?
Would he/she be conscious during the seizure?
Can you understand other's reaction etc during seizure or become unconscious totally until you wake up?
Can you sense beforehand that you are going to start getting a seizure?
If yes, is there a way to prevent it by doing something before it becomes too late?

My son falls asleep right after seizure ends for an hour or 2. When he wakes up, he complains of head ache. He couldn't tell anything more. It breaks my heart.

Thanks for your support!
Amy

I also have a cousin with High Fuctioning Autism.
He also had a couple seizures. I think he only had one or two though. That's all I remember seeing anyway...
he had them when he was around 6 but hasn't had any since (he's 16 now)


I have seizures...mostly Complex partial
and although it does vary from person to person, most of the 'symptoms' stay the same. (I answered these questions for what I feel during a Complex Partial seizure. How I feel during any other type of seizure could be completely different. That is one way I can distinguish my seizure types from one another...)
1. During a seizure, you do not feel anything. Including pain. Before seizures, if I have the feeling I am about to have a seizure, it isn't really a bad feeling, it is a dreamy feeling, like I am in a dream and I am floating around....it's somewhat hard to describe but that's the best I can do...
And after the seizure, I don't feel pain, if anything, I might just feel a little tired....but that's it...
2.I'm not usually concious during seizures. I might remember bits and pieces of what happens but for the most part, I have no idea anything has happened...
3.Usually I am unconcious during the complex partial seizures, but I do sometimes mumble and interact with my surroundings. If there are people around me and they ask me a question, I might answer them, but it probably wont make sense if I do...(I don't know if that makes sense...sorry)
4.Usually, but not always, I can sense beforehand when I am going to have a seizure. It's called an 'aura' and your son may or may not have them. Each person's aura is unique. Depending on the type of epilepsy, during the aura, you can have vision changes, deja vu, funny smells, all sorts of things...it all depends...
5. I have no idea...just get to a safe place and let the seizure happen and stay calm. I have never succeded in stopping a seizure. Even when I do have an aura, you just have to get to a safe area....

Hope this helps,
Brandi

 

[RobinN]

Amy - you know many girls begin having seizures when their hormones kick in. You might do some research about this for boys. Perhaps there is an imbalance occuring. I didn't know there were foods rich in certain hormones. Take a look:

http://www.dogtorj.net/id46.html

 

[Amy]

Dear Brandy & Robin,
I'm so glad I joined this grp. Thanks a lot Brandy for telling how it feels like having a seizure. It is soothing to know that it doesn't hurt while having it. And it is so interesting to know that you both have someone in family with HFA. It is a small world, isn't it?
I was clueless till I read your email, what my poor baby is going thr.. he has no much words to tell me. I will certainly keep your words in mind. I do get emotional, but try my best, to hide it from my child. He also is diagnosed with complex partial seizure. Only thing is he suddenly starts to stare at a point with shallow breathing and is nonresponsive during that time. After a min or few, he coughs and comes out of it. goes to sleep for an hour+. wow... it is so scary to think of it while driving. Do people with seizure have driver's lisence usually? how do they manage seizure moments then? I wish people atleast do have the "aura" & can pull out and immediately take a magic medicine that can prevent. (like they have "isodril" for heart attacks, my dad takes it). Is there anything like that for seizure?
Thanks so much for all your support, I feel as a part of your family & feeling so much better to know the answers that I was longing to learn.
Best, Amy

 

[RobinN]

Amy-
Yes there are problems if a person drives while having a seizure. Just recently a woman ran over some children that were walking with their mother. Very sad.
There are certain rules in each state. We have a few threads that discuss this. You can do a search if you are interested in this subject.

There is a drug that we were given called Ativan. It can be given in case there is a statis seizure.. one that goes on and on without an end in site. Ours was given just in case of...? We were given a pill form, which would be hard to take or put in someones mouth if they were having a Tonic Clonic seizure such as my daughter has. Then there is a suppository, which also would be difficult to give, and who would want to in the middle of school. I have read however they are working on an injectable form, like a diastat. I am not sure when this is due out.

There are other methods that have been known to work, check out this post:
http://www.coping-with-epilepsy.com/forums/f23/couple-things-you-may-want-think-about-even-try-2194/
I am not sure if any of these would work with your son.

 

[Amy]

Thanks Robin. I'll check the thread. Yes, diastat (rectal valium) is out & is available. I'm given a few of them. Only thing is first time when you use it, you need to call 911 as the child may get some breathing trouble. Infact, I used for my son this time for the first time & got panic that it didn't stop right away. Then I learned from paramedics that it may take a few min to 7 min to work on him and stop the seizure.
Some schools somehow dont feel too comfortable using the diastat - but they have to do it, if there is an order from dr. Another way to look at it is as a mother is that, there is no point in forcing people to do when they don't have the heart to do it. When I felt the unwillingness from the nurse, I was asking in my mind if they won't do it if they have to, for their own baby..... No point in asking, I felt. so, we've told them to call 911 if it the seizure lasts for more than 2 min. But they had to call 911 last month & I got so panic to see them when I was rushing in... It was ofcourse hard to convince them that they can just give me the child instead of taking him to emergency etc etc. They took my sign in a form & gave him to me finally.
So, it is up to your comfort level I guess.

 

[leonard]

hello amy

hello and nice to talk to you and hear your story. if i may ask how often do these seizures happen. my son was diagnosed last month and were still looking for more answers. leonard

 

[skillefer]

Hi Amy!

Welcome to the forum. There's a lot of people here who can help you with your research. As for your son, the thing to remember is stay calm. I know that's hard, but how you react will effect how he reacts to having seizures. Also, as for the meds, it usually takes about a week or two for the drowsy side effect to go away. I used to take Depakote because I had seizures where I was conscious, and my head would pull to the right. I'd end up walking around in circles for a few minutes. There wasn't any pain either before, during , or after. Just being really tired. (Might explain the naps) Just know that seizures can be exhausting. I outgrew them according to my neurologist (the ones where my head pulled to the right). But I still have grand mals. Those are far scarier to watch. As for driving. I do have a driver's license, and do drive. So does my aide (I'm a teacher) who has seizures like your sons. Her son (who is 15) has had a driver's license since he was 12, so that if she had a seizure while driving, he would take control of the vehicle and drive her home. Each state is different. So you'll have to check out your states DMV requirements.

 

[Bee91]

Do people with seizure have driver's lisence usually? how do they manage seizure moments then?

I don't have a driver's license...at least not yet. It all depends on the state you live in and when your doctor thinks your ready to handle that. I'm still having quite a few seizures (complex partial plus a few other types) so I don't expect to get one for at least a few more months...

Don't take my word for this, but I think in some states, if you have auras with your seizures, you can get a license...? If you have an aura you just pull over...something like that...? I don't know exactly...

 

[SeizeTheDay]

Hi Amy,
It does sound like he might have auras since you mentioned that he always comes to your or his father. Something is telling him to seek safety. An aura itself can be hard to explain for anyone since it could be a strange sound only they hear, odd tastes, visual differences. No matter what it is good that he comes to the both of you for safety. To be honest, I wish I did have auras although I have "stutters" before hand. When that happens I take some extra med (don't do this without the doc's permission!!!) and lay down to try and relax..breath deeply, etc. Most of the time it doesn't go any further than that.

Even though it might look like we're in pain, chances are we have no clue at all. It's like that time never existed to us. As a child I had petit mals. I'd pause in the middle of a sentence, stare off, and then pick up right where I left off as if nothing happened. I was fortunate with those because the worst thing classmates thought was that I was a bit airheaded lol.

I now have grand mals (tonic clonic aka TC's) and I always say that "it's not the seizure that hurts, it's the darn fall!" If I hit my head it's going to be one heckuva migraine for the rest of the day. I am ALWAYS exhausted afterwards and typically do have a headache no matter what. TC's are one tough workout for your muscles. Hmm, I wonder how many calories we burn during those? Don't worry about him being sleepy or even slightly confused afterwards. That's what is called a "post-ictal" state which occurs immediately following a seizure.

Anyhow, read up and research on auras so you can better understand them. The more you know, the better you can target your questions so that maybe you can help him find the words to explain to you what's going on. Also, since this is all new to you, try and make notes of what was happening before, during and after a seizure so you can describe it to the doctor. The more details they have, the better they can help. Keeping a diary of food intakes along with those notes is also a very good idea. Write down any questions that pop into your mind in between doctor visits. That way you don't forget anything.

Best of luck to you and your family. You will get through this and the people on this forum are wonderfully supportive which is exactly what you need right now. You're amongst friends here

 

[Amy]

Hi Skillefer,
THanks a lot for all your info. BTW, I like your cute duck. hmmm... it is interesting to know that you were conscious when the head would pull to your right. My son also looks conscious a bit but no response, so unable to figure out if he is really conscious or not.
He is only 9, so I have time to think about his driver's license, just I was curious abt how people manage. And I will hope for his seizures to stop by then LOL
You guys are really great for sharing all the info.
Thanks again,
Amy

 

[RobinN]

Amy,
I have a note at my daughters school that 911 should be called after 5 min. I know it will take them a while to get there, but if I left it at 2 min, they would come each and every time she has a seizure, since hers last approx 3 min.

Some schools don't feel comfortable doing anything, other than giving out ice, for fear of liability. In the health office at the HS there are parents that volunteer to sit in the office to help each day. I do my share each month, and we can't give the students anything but a bandaid and ice. TLC goes a long ways.

Rebecca has seen how nutritional choices have played a huge part in her seizures. So she is starting to get on board with the idea. Then again, you wouldn't have known that from seeing how many sweets she ate over the holidays. Finally back to a routine.

I hope you have a seizure free month.

 

[epileric]

Here are my questions:
I'm longing to hear from a person who goes thr it, how does it feel to a person who gets seizure? Does it hurt badly somewhere?
Would he/she be conscious during the seizure?
Can you understand other's reaction etc during seizure or become unconscious totally until you wake up?
Can you sense beforehand that you are going to start getting a seizure?
If yes, is there a way to prevent it by doing something before it becomes too late?

My son falls asleep right after seizure ends for an hour or 2. When he wakes up, he complains of head ache. He couldn't tell anything more. It breaks my heart.

Thanks for your support!
Amy

Welcome to the site, hope this helps you.

My seizures are usually non-convulsive but I've had the whole spectrum of seizures. The non-convulsive (petit mal) seizures are not painful but very tiring. I occacsionally have ones where my head is pulled to the right & my eyes & neck might be a bit sore from stretching in an unnatural way.

I am conscious during the smaller ones but during the big ones I am unaware of my surroundings for only a part of the seizure. After a large one I can understand people perfectly but I can't even answer what my name is. Talking or writing are out of the question (I"m told I don't make sense when I talk after a large seizure) but I can understand what is being said to me.

Sometimes I do get an aura when I can sense the sz. & other times I don't. As I've gotten older I've discovered little things that might help stop it like being aware of my breath & not hyperventilating, keeping my mental focus on anything, or turning away from the computer. When I do these I have to also be aware not to panic or get excited to do these things as excitement makes things worse rather than better.

As I think someone else mentioned how someone is effected differs somewhat from person to person.

 

[Birdbomb]

1.I'm longing to hear from a person who goes thr it, how does it feel to a person who gets seizure? Does it hurt badly somewhere?

2.Would he/she be conscious during the seizure?

3.Can you understand other's reaction etc during seizure or become unconscious totally until you wake up?

4.Can you sense beforehand that you are going to start getting a seizure?

5.If yes, is there a way to prevent it by doing something before it becomes too late?

6.My son falls asleep right after seizure ends for an hour or 2. When he wakes up, he complains of head ache. Amy

My answers will be from MY experiance for the most part.

1. For the most part no, with one exception. My first grand mal. There was no pain involved DURING the seizure, but when my tongue blocked my airway, I was very alert and aware. I could not breathe or speak. All I could do was move my eyes and I was suffocating. I saw my husband standing and watching me but I was totally helpless. About 3 hours after my seizure, I began to get feeling back in my body and realized I had pulled my back muscles very badly and just chewed my tongue into a pulp. Saying I was sore is a gross understatment.

2. Depends on the TYPE of seizure. My grand mal I was aware during about 1/2 of it. The complex particals, never. But the simple particals and drop, I am very aware.

3. With simple particals I see, hear and understand everything going on around me, but may or may not be able to respond. Sometimes I can have a seizure and no one else is aware of it as I go about my business.

4. I usually have about a 30 second warning.

5. There have been times where I think I have "willed" the seizure away, but who can say for sure.

6. Headache is par for the course. The more deeper the seizure, the worse the headache. My complex particals would send me into a migrane afterwards. Most simple particals were so mild there would be little or no headache at all.


I know most seizures LOOK horible, but to go thru them is for the most part painless. It's so difficult to actually watch seizures, because of the human body is doing very unnatural positiong so it looks painful. Youtube has several videos available to watch of other's seizures. I have witness a few in my epilepsy support group and at a restruant I mangaed years ago. Very sobering images.

 

[Amy]

Thanks Robin! I guess the infinite fear I have is the reason for me to put down 2 min in emergency plan! Abt 2 months ago, his lips started to turn slightly bluish after a minute of seizure. I can't tell yu how scary it was to see...
And you are right! The schools are so worried abt liability.... You wuldn't believe that my school nurse insisted me to take my son home immediately after the seizure stopped. I told her strictly I will not do it, when he falls asleep he shouldn't be disturbed until he wakes up on his own in an hr or 2, as per the dr. What wuld I do, if it relapse when I drive him home? I dont want to imagine pulling out, struggling to call 911 etc having him on the road & what the hell does she lose, if the poor baby is sleeping in a corner of the office room, me standing right next to him and taking 100% care? At times these kind of people are so annoying & it is so sad that we do have to meet such people, despite going through tough moments already with our child's seizure etc.
Robin, I also wonder if anyone may get seizure while sleeping too? or is it ruled out?
Thanks a lot!