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Old 09-16-2008, 11:37 AM   #1
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Pumpkinsmom HB User
10 yr old with absence seizures

I'm new to the board and new to eplilepsy. My 10 yr old daughter was just diagnosed with abscense seziures (hope i spelled that right) My problem is that most of the info I find are about grand mal and I'm not finding a lot about her particular problem.

This probably started back in Jan or Feb. I didn't realize it at the time...just thought she wasn't paying attention. When I realized something wasn't right back in May I took her to the pediatrician who immediately sent me to a pediatric neurologist. First problem was we had to wait till AUGUST for an appointment. Longest 3 months of my life (so far) Even without the EEG he was 100% sure it was epilepsy. We did the EEG anyway which confirmed it. She is on meds now and doing much better. By July she was having upwards of 20-30 episodes a day. We were at Disney so of course I was more aware of it because of the rides she was on (never let her ride alone though) and the long days (poor kid was exhausted but happy) That was when they were the worst. So we know that being over tired triggers it but still working on what else does. The nuerologist immediately told us no caffine (which I don't let her have anyway) and no red dye... I thought, ok that shouldn't be hard. WOW was I ever wrong. Almost everything she likes to eat has red dye in it. This is frustrating for me as the one who shops and cooks but even more so for her. Especially with Halloween coming. She is sure she wont be able to eat any candy. Which I am finding is probably so. I went on line and did find some websites where I can purchase dye free candy. I was also concerned about chocolate because of the caffine. There is such a small amount in chocolate but I still hesitate. We will try white chocolate to see if she likes that. I was allergic to chocolate as a child so I understand the frustration.

It's been about 6 weeks since she started her meds and she will go 4 days without an episode then have one, maybe two, then 4 more days without. The Dr asked me to keep track but it's hard with her in school all day. Because she has 8 different teachers, although they are all aware of the problem, it's hard to keep track of what happens in school. She tells me she has no warning that it's coming but when she comes out of it she is aware that it has happened. So we've now gone 5 day seziure free and then this morning she had one at the bus stop. So, we start again. Dr. says 2 years seziure free before we can take her off meds.


In addition she has several food allergies (mostly fruit) so even some of the "natural" or organic products cause us a problem because instead of using dye they use real fruit.

As hard as this is for me as her mom, my poor kid!! Just starting middle school, heading into puberty, this is such a hard time for a kid to begin with. I wish there was something I could do to make her feel better.

Thanks for letting me get that off my chest! I actually feel a little bit better now.

If anyone has found any good snacks for kids with no dye, caffine, berries or pineapple please let me know.
Thanks!
Pumpkin's Mom

 
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Old 09-16-2008, 07:51 PM   #2
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Re: 10 yr old with abscense seziures

You could Try some V8 Mixed Veggie juice. Propel fitness water, Gatorade.

for snacks theres always lowfat yogurt. ;D

Some kids cant feel them comming, im fortuent enough too though, iv had seizures since i was 8 and am now 17.

What you could do. I cant say for sure. but there shouldnt be a reason she should be having them every couple of days... I went 2 years without one and had one, stress is my weakness i found out. anyways.

I take Carbatrol i think its spelt. Works great for me. I also have had an EEG and numerous MRIs
There really isnt much you can do, which as a parent, that is something that really hurts. What you can do is hope. One thing you should be aware of is Beer aka alcohol. I dont know what the doc said, but my specialist told me it will kill me, Be sure to ask your doctor about that, that is very crucial.

Other then that. maybe get her something to lift her spirts a bit? Not saying go all out, but maybe a book she wants or something.

Last edited by CodinCody; 09-16-2008 at 08:03 PM.

 
Old 09-17-2008, 07:58 AM   #3
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Re: 10 yr old with absence seizures

sorry for asking this but what is absence seizures ? and what does she do when she has a spell like does she fall or what i have seizures too im not sure what mine are as of yet but i fall to the floor with mine and eyes flickering among other things so just wanted to ask what she does with absence seizures .
vickie

 
Old 09-18-2008, 05:42 AM   #4
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Re: 10 yr old with abscense seziures

Thanks for responding. And youre right, as a parent it's hard to not be able to help. And thanks for the suggestions. I really appreciate your input!!

 
Old 09-18-2008, 05:51 AM   #5
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Re: 10 yr old with absence seizures

Hi Vickie! First, no apology necessary. A lot of people don't know what an abscense seziure is. When I was a kid they called them petit mal. The easiest way for me to describe it is that it is like someone pushes the "pause" button. She can be in the middle of a sentence and she just...stops... They usually only last about 15-30 seconds. She doesn't fall down but sometimes her eyes will roll up a bit, sometimes they just kinda of jiggle (for lack of a better word) There is no warning for her but she says the second she comes out of it she knows it's happened. I guess she realizes the loss of time even though it is so short. The one thing she does consistently when she comes out of one is she blinks a few times and then quickly says "What?" There doesnt seem to be any after effects either. She says she feels perfectly normal.
The main trigger for her (so far) seems to be lack of sleep. If she gets overtired at all it seems to happen. Not sure about stress although I've heard and read that this is a common trigger for most people with epilepsy.
Your posts says you are not sure what kind yours are yet. I hope that this means that you are seeing a nuerologist and waiting for a diagnosis. If you have not seen a nuerologist yet, please do so right away. The sooner you get this under control the better!
I will keep you in my thoughts. I wish you all the best.
Pumpkins Mom

Last edited by Pumpkinsmom; 09-18-2008 at 05:53 AM. Reason: spelling

 
Old 09-18-2008, 10:44 AM   #6
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Re: 10 yr old with absence seizures

Hi PumkinsMom,

Hope your child is doing good now. Could you please tell me is the seizure frequency reduced after you started the medicine. I am also having my child with same problem, and I am waiting for the appointment date with my doctor. Could you please help me and could you share your experience.

Thanks,
Bijumani

Last edited by bijumani; 09-18-2008 at 10:46 AM.

 
Old 09-19-2008, 06:15 AM   #7
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Re: 10 yr old with absence seizures

Quote:
Originally Posted by Pumpkinsmom View Post
Hi Vickie! First, no apology necessary. A lot of people don't know what an abscense seziure is. When I was a kid they called them petit mal. The easiest way for me to describe it is that it is like someone pushes the "pause" button. She can be in the middle of a sentence and she just...stops... They usually only last about 15-30 seconds. She doesn't fall down but sometimes her eyes will roll up a bit, sometimes they just kinda of jiggle (for lack of a better word) There is no warning for her but she says the second she comes out of it she knows it's happened. I guess she realizes the loss of time even though it is so short. The one thing she does consistently when she comes out of one is she blinks a few times and then quickly says "What?" There doesnt seem to be any after effects either. She says she feels perfectly normal.
The main trigger for her (so far) seems to be lack of sleep. If she gets overtired at all it seems to happen. Not sure about stress although I've heard and read that this is a common trigger for most people with epilepsy.
Your posts says you are not sure what kind yours are yet. I hope that this means that you are seeing a nuerologist and waiting for a diagnosis. If you have not seen a nuerologist yet, please do so right away. The sooner you get this under control the better!
I will keep you in my thoughts. I wish you all the best.
Pumpkins Mom
yes i been seeing a nerologist since mar 07 but dec 07 is when my neuro dr told me yes its seizures what kind i dont know alls i know is sometimes i get the warning feeling then i fall to the floor my eyes flicker and roll back in my head i shake then i start screeming this is what my family has told me i dont remember when i have the big ones but if i get a small one i remember but also with the big ones i hear people talking but cant respond cant focus there faces mine last like 30 to 45 mins and sometimes just before i fall my head hurts real bad and my stomach and i start getting confused but sometimes i know when its coming i get dizzy too im seeing a specialist next week since my old neuro dr had a anurizum hes ok but hes close to 70 and he may not be back they said .and my eyes have been very blurry lately dont know if that has anything to do with seizures or not but see i also had seizures as a child mine started when i was 4 till i hit 9 close to puberty .
vickie

Last edited by vickie45; 09-19-2008 at 06:18 AM. Reason: forgot a few things to add.

 
Old 09-24-2008, 09:32 AM   #8
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Canada eh HB User
Re: 10 yr old with absence seizures

PumkinsMom - I know exactly how you feel!! - My daughter started having grand mal seizures at age 8 - was put on tegretol and and went seizure free for a year and seizure and medication free for another, then the absense started. We have been trying for 2 years to get the right medication and dosages to control them. I think we are close now because she only seems to have them occasionally, and can go a day or two without any. She doesn't feel them coming and usually isn't aware that she had one. She also always says "What" or "I don't know" just after have having one.
Thought it was interesting that your Dr said no caffine or red dye. We weren't advised of this. We were only told to ensure she doesn't skip meals and gets plently of rest. I do notice that if she is tired she has more. Also if she is concentrating really hard, if she is winded from running, or if she is really hot.
I wish I had some great advice to share with you, but we struggle through everyday and just keep hoping the medication will work or she will grow out of it. (she's 12 now)
Just wanted to let you know you're not alone (and neither is your daughter). Lots of families are going through the same thing!

 
Old 09-29-2008, 05:32 PM   #9
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Re: 10 yr old with absence seizures

Canada eh - Thank you so much for your note. It's is good to know we are not alone in this although I wish none of us had to be in this to begin with.

She is currently taking Ethosuximide which originally was marketed as Zarontin but she is getting the generic since it only comes in liquid. She can't swallow the pills. It seems to be working pretty well, but I think we need to up the dose just a bit. We see the neurologist again in Nov so we'll discuss that with him then.

As for the caffeine and red dye.... Caffeine really isn't good for kids anyway. Their hormones make them hyper enough. I never really let her have it to begin with. My nephew has ADHD and my sister in law was also told no red dye. I have a friend with a daughter who is autistic and she is also not allowed red dye. I've read a lot on line about red dye recently and it seems to be a problem for a lot of folks with allergies too. Maybe food manufacturers need to take a look at what they've been putting in their products and find an alternative. I don't know what the connections between red dye and these conditions are but you should mention it to your daughters neurologist next time you see him/her.

My daughter also has a problem if she gets winded, it's almost like hyperventilating I think, and I was also told about proper diet and rest.

I am happy for you that she is doing so well and hope that she continues to improve. My thoughts and prayers are with you both. Thank you again. Even though, as you said, you don't have any great advice, it's just nice to talk to someone who understands what we are dealing with. Thank you again so much.

 
Old 10-20-2008, 05:14 AM   #10
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Re: 10 yr old with absence seizures

Hi, My son has the same kind of seizures. May I strongly suggest you speak to your childs neurologist. The doctor should explain IN DETAIL exactly what is happening. There is a lot of info on epilepsy (legitimate I might add) if you spend some time looking for it. The best thing a Mom can do is to educate herself about their childs condition. Learn all that you can and you will be fine. This can be a difficult and dangerous condition but don't be afraid of it!My son had a grand mal seizure at age 21 for the first time. He has had many seizures like you described over time BUT, they did not occur on a daily basis! Your daughter MUST ALWAYS take her medication, get sleep ( sleep deprivation is a big cause for seizures!) and in time, avoid alcohol and... educate your child about using illegal drugs not because you should but because, with her condition...fooling around and "experimenting" could kill her! My son left our home in a "state of seizure", in the middle of the night, drove his car and hit guardrails wiping out the side of his car.Thank GOD he didn't kill himself or someone else! This, my friend happened because he didn't take his medication as he should have. He is able to drive but MUST stay on his meds. It's hard for kids, young and old to understand the reprecussions. My son learned the hard way. Good luck! TALK TO YOUR NEUROLOGIST!!!!!

 
Old 10-21-2008, 09:06 AM   #11
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Re: 10 yr old with absence seizures

Quote:
Originally Posted by bijumani View Post
Hi PumkinsMom,

Hope your child is doing good now. Could you please tell me is the seizure frequency reduced after you started the medicine. I am also having my child with same problem, and I am waiting for the appointment date with my doctor. Could you please help me and could you share your experience.

Thanks,
Bijumani
Yes, they did decrease quite a lot after starting the meds. Took about a week or so but we went from 20-30 a day down to 1 every couple of days so the meds did help, just didn't stop them completely. I'm sure they will probably adjust the dosage and I am hopeful that will help stop them all together. We have an appointment in 2 weeks to see the nuerologist again.

Good luck with your appointment also. Hopefully the meds will help your child too.

 
Old 10-21-2008, 09:15 AM   #12
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Re: 10 yr old with absence seizures

Quote:
Originally Posted by allie56 View Post
Hi, My son has the same kind of seizures. May I strongly suggest you speak to your childs neurologist. The doctor should explain IN DETAIL exactly what is happening. There is a lot of info on epilepsy (legitimate I might add) if you spend some time looking for it. The best thing a Mom can do is to educate herself about their childs condition. Learn all that you can and you will be fine. This can be a difficult and dangerous condition but don't be afraid of it!My son had a grand mal seizure at age 21 for the first time. He has had many seizures like you described over time BUT, they did not occur on a daily basis! Your daughter MUST ALWAYS take her medication, get sleep ( sleep deprivation is a big cause for seizures!) and in time, avoid alcohol and... educate your child about using illegal drugs not because you should but because, with her condition...fooling around and "experimenting" could kill her! My son left our home in a "state of seizure", in the middle of the night, drove his car and hit guardrails wiping out the side of his car.Thank GOD he didn't kill himself or someone else! This, my friend happened because he didn't take his medication as he should have. He is able to drive but MUST stay on his meds. It's hard for kids, young and old to understand the reprecussions. My son learned the hard way. Good luck! TALK TO YOUR NEUROLOGIST!!!!!
I'm glad that your son was ok from his accident. Must have been a terrifying experience for you all. We do have an appointment in 2 weeks to go back to the nuerologist and believe me, I had a list of questions written down for our first appointment and now have a second list (rather long) for our next appointment. You are right, there is a lot of info out there and I have spent countless hours scouring the internet.

I grew up with several drug allergies so I was always afraid to experiment with drugs as a teen. I've already had that conversation with my daughter but have not approached the subject of drinking with her yet. She just turned 11 this month and started middle school so I guess now is a good time to have that conversation too.
Has your son ever managed to be seizure free or has he always been medicated? I have found that a large majority of children do outgrow this but then some don't.

Thank you for responding and for sharing your story. The support is greatly appreciated.
Pumpkins mom

 
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