Information on Childhood Seizures

How many and what type of seizures has she had? My 8 year old daughter has had a few grand mal seizures in the last year or so and we have opted thus far not to use medication. We are just very careful with her. Since she is so young, admittedly it is easier to monitor her around water, heights etc than it would be for a 16 year old. (We also home school which she absolutely loves but she is very active with other social things so it's not like she's sheltered from life at all).

There is a cousin in our family who has severe epilepsy who has had operations, and serious medication all of his life since his is so severe but his mother recommended to us not to use medication right away as so many kids have a few and then no more.I guess that wouldn't be possible if she was having them more regularly. Is it at all possible not to use the medication? Also there are several different types of medication and apparently some are not as severe with side effects as the one that is most common (is it phenybarbitol?)I think Keflex was the one my cousin's mother recommended if we must go that route. Our pediatric neurologist told us that it is more common for teenagers to get them for awhile and then for them to stop. He said my daughter's age was uncommon to start like this but it is more common in teenagers.They don't really know why but it could be because they are growing and changing and sometimes it goes too fast for the brain or something like that.

Good luck with it all. I know how scary it is. I hope she stops having them really soon or that you find a better solution with medication.

Our child missed school alot- sometimes 9-10 days at a time. Keep the communication open with the school administration. Allow your daughter to stay home when she needs to, or consider an independent study program where the school allows her to study from home using the school textbooks and teacher guidance. She may be avoiding school because she is embarassed by the illness, afraid kids will see her in seizure, etc. Good therapy will help with any esteem needs. Her physical and mental health are more important than her grades- she can always catch up on the work.

C.,
I was diagnoised w/epilepsy during a 2nd pregnancy when I was in my 20's. The first thing for me to suggest is a second opinion (if you havent gotten one). My HMO doctors put me on medication that was so strong I walked around in a fog for almost a year! I finally got them to send me to a neurologist (as my primary). He put me thru all new sets of tests but was able to lower the dose & the medication itself.
I no longer found myself walking around ALL DOPED UP!!
I could function with my two small kids & eventually I was able to drive again. The neurologist kept up with the medicine & serium checks (bi-weekly) I only went back to my regular physician for colds & flu....
I have since weened myself from all medication & have not had a seizure in many years. If it was for the HMO doc's I would still be KNOCKED OUT....(they had me on more than 1000 milgrms phenobarbital daily)!!!!
Good Luck with your daughter...just remember to ask questions all the time...The answer you get today could be different from what they tell you next week...make sure she is seeing a neurologist....Not a family practice. I don't mean to scare you I just had a terrible experience myself. I have heard they have all different medications now too....Good Luck, I wish you all the best....
Wow I just read some of the other e-mails...I should have read them before I sent u this...I think I learned some new stuff too!~ thanks....

Dear C.:

I have epilesy and it started when I was ten. I went through having epilepsy in high school and know how hard it can be, particularly when it comes to driving.

WHat in particular do you want to know?

I would be happy to help if I can.

N.

There is a very good seizure support network at Parents helping Parents www.php.com You can call them at ###-###-#### and get lots of information.

Hi C..
Im so sorry for you and your family. Thats a real tough situation. I dont have any advice regarding the medical issue. But i do know of a great online school. My son attends it and I also work from home. Its called Connections Academy. You can find it online at connectionsacademy.com. Its amazing, and very supportive. I hope this helps.. My thoughts are with you and your family.. ;)

Hi C.,
To answer your question is...ABOSOLUTELY!
I am 32 and started having seizures at the age of 12. Mine were caused by an almost fatal car accident, when my head went through a wind shield at 60mph.
I don't know what kind of medication your daughter is on, or how long she's been taking it, but some meds have different affects than others.
Medications like Dilantin can make your speech slurred and make you seem a little slow and lethargic.
If she has just started taking meds, her body is probably adjusting to them and she may not always have to be out of school.
When do her seizures occur?
Has she had enough sleep?
Make sure she gets 8 hours of sleep a night. I know it may sound like it's more than needed, but this question and the ones below can be triggers.
Is she upset/stressed?
Did she miss her meds?
Is she on her period?
One great secret that I love to share to eliminate having seizures is this...
I had them the week of my period, mostly in my sleep.
I have been able to fight off seizures anywhere from 2-5 years at a time, now as an adult.
I take the birth control pill every three weeks and don't cycle.
The combination of missing my period and the anti seizure meds are a great combo for me.
I've spoken with both my OB and my neurologist about this and you may want to do the same with your daughter's.
I know it's only my personal experience but hope that it has helped.
I have my drivers license too and if she wants someone to talk to as well I'm happy to talk to you both. Maybe over a cup of coffee somewhere.
I would love to help you and talk to you in person. I have some great suggestions that I think will be beneficial to both you and your daughter.
My number if you'd like it is ###-###-####.
Wishing you well,
M.

i was diagnose with seizures at 12 when 1 was 20 i started to see a chiropractor i am seizure free at 26 i can drive and i am on no meds. my advice to you is to find a great chiropractor. I see jason beck in petaluma

My son has had seizures since he was 8 years old. He is on medication. We have a protocol with the high school that allows him to stay in school unless the seizure is more than 10 minutes long or if he has a second seizure. He is allowed to sleep. Afterwards when the seizure is over is given Tylenol because he always has a headache when he wakes up. Any questions the parents are called immediately, of course. We feel that this minimizes the disruption of having a seizure to just an interruption of the day instead of a complete disruption. Also, if your daughter has a seizure at home in the morning I suggest getting through it and sending her to school late instead of having her stay home. Always make her day as normal as possible. If the medications are causing her problems, seek different meds. There are many new meds on the market. My son is on Trileptol and Topamax - just two of the many available. This mix has worked well for him. He started on Tegretol but this caused a huge weight gain and also caused depression. This is not to say this med is not Ok, just did not work for my son. Good luck to you and your daughter.

Depending on how much school she is missing, she may have a right to a medical disability diagnosis. I think that the plan is called a 540. You'll have to investigate. Call the school district and inquire about it.

We help people with seizures through nutritional supplements, and have a number of very happy clients. PLease call A. if you would like to talk about this. ###-###-####

Please look in to www.iahp.org they have a program coming up on how to treat your brain-injured child ( CP, epilepsy, autism, down s., developmentally delayed, and more!!!) April 21-25 in Philadelphia... I am going to be there!!!I have 2 Autistic Boys... I have heard that they will help your child get of seizure medications and get better with their program!!! Love, G.. :0)
P.S.Check this out:

http://www.iahp.org/Who-I.62.0.html

http://www.iahp.org/Artic.309.0.html

My child started to have seizures and was sick a lot. Each one was so bad that she would miss a week and a half with each seizure. I started to get her adjusted after each seizure and she recovers from the seizure much faster. Now I take her once a week and she has been having less seizures. She is also on medication. The medication we give my daughter makes her very sleepy so I give it to her when she gets home and right before bed. I didnt believe the adjustment would make such a difference until I saw it for myself. Her balance came back faster and her speech. Her eyes didnt look glazed over and she seemed almost back to normal. Let me know what you do I would like to hear if your daughter feels better.
Dr. Sharon Lark is the Chiropractor. She's the best.
N.

Hi
I hope your daughter is seeing a pediatric neurologist or an adult neurologist who has identified the cause of the seizures.
Antiseizure medication should be monitored by checking blood levels. It must be a difficult time for you and your daughter msy be some counseling for her or a support group?
J

My son, he's 26 now, has had seizures since he was 12. He fell skiing. W/in 6 wks, he developed abnormal sleep activity & night-time seizures.
He's tried lots of meds, & some have bad side effects. Dilantin really effected his gums & teeth. He has missed quite a bit of school. Communication w/ the school is critical.
He's had exploratory brain surgery-twice @ Stanford, & has an implanted device which supposedly reduces the seizures.
Honestly, his dad thought this would "fix" the problem, but of course it hasn't.
My son has made changes in his life. He tries to eat well & be mindful of stress. Sleep is very important since his meds affect his sleep patterns.
He sees a doctor regularly b/c this condition affects his job, life & his future. He does understand his condition, & shares his experiences w/ others.
Keep looking for the best method to manage your child's condition, you might be one of the lucky parents whose child stops having seizures. I hope you'll join this group. It's tough, be strong. J

While I don't have any personal experience with seizures, I am a health and sports medicine teacher so I've read a lot. I know that there are dogs out there who can actually predict seizures and they make wonderful companions for people in your daughter's situation. You may want to look into it. :)

I can't help you with the seizure part, but I do have a 16 year old girl who has missed a ton of school over the past few years due to surgeries.

There are a couple of things you need to do with the school -- you need to get a Health Plan in place so she's allowed to carry drugs at school, and the school has the emergency instructions should she have a seizure at school.

A 504 plan is for school accommodations when the disability is not "educationally significant" Otherwise, she will need an IEP plan. You'll want to document things like extra time for turning in assignments, taking tests, etc.

This could qualify as a disability and make your daughter eligible for special education services under the "Other Health Impaired" category, or for accommodations under the Americans with Disabilities Act in a 504 Plan. If the disorder is affecting her in school and interfering with her ability to benefit from her education, request a meeting at her school to get accommodations or services. If she misses a lot of school, she would qualify for home schooling. Check out info on wrightslaw.com

J.

I was diagnosed with a seizure disorder when I was 20. I went through several meds before I found the one that fit. It does take several months to get used to a med before things settle in. However, if it is disrupting her life to the point that she is missing school, I would recommend talking to her neurologist about finding another med that fits her better. There are alot of seizure meds on the market and their is no reason she should suffer. Good luck.

why does the medication make her miss school? Also, are there other medications she could use that work but wouldn't have the effects of her having to miss school?

Your might get some useful information from Parents Helping Parents in Santa Clara. They have a library with lots of information. If you go on their website www.php.com and search for "seizures" you will get a link to the "seizure support network". I think they have packets of information and support groups.

I was diagnosed with petit mal epilepsy when I was 14. It helped me to read a book about the disorder to learn more about it. I was diagnosed with grand mal epilepsy at 24. Luckily, in both instances I did not have side affects to the medications. Maybe you could talk to your neurologist about switching to a anti seizure drug that will not have as many side effects? Also, I never did this, and she may feel too old for this, but they do have camps for children and youth suffering from seizures. That way she could connect with people her own age who understand or can empathize with what she is going to. Hopefully her teachers are understanding about her missing school a lot. She is protected under the Americans with Disabilities Act so if she needs more time for test taking and such then this should be able to be arranged. Good luck to you!

Hi C.,
Have you thought of going an alternative rout? There is a technology that is changing peoples lives. It's all about cell communication. If the signals are not being sent right than what the outcome? Here is a site that only gives information, www.livingsugars.com The Medical world know about it but because it's natural they don't talk about it they only perscribe drugs . It is in the Harpers Biochemistry book for all Dr.s to learn about it in Med school. To get the product from the company that has a world wide pattent on it is www.gomanna.com They are a research and developement company and I take all their products . I have had great results and so I share them with every one! I can make a difference one person at at time!

Hi, I was diagonosed with epilepsy when I was 12. I feel for what you and your daughter are going through. I know this is a confusing time. My advise is to keep things as normal as possible. Like the other advise said, try to get her back in school. I know kids can be tough but there are so many changes happening, as much as possible should remain the same. Also try not to overprotect your daughter. I have no idea what it like to be the parent of someone with epilepsy, but my Mom tried not to overprotect me. I thought she did a little, but that's okay. And listen to your daughter. She has to be able to talk to someone about all these changes to someone who will understand and listen to her. I hope this helps. Good luck.

Try a support group with other 16 year olds. My daughter goes to therapy with her age group and it really helps. My daughter is 13.

Hi C.. I have two kids wtih seizures, one is a teenager. So first I would say call the pharmacist and see what side affects go along with the med your daughter is taking. Some of the bad side affects go away within a few weeks of being on the meds - upset stomach, dizziness, tiredness, etc. If she's been on the meds longer than a few weeks, I would get her back into the neuro for a med change. Sometimes it takes awhile to get the meds just right where the seizures are controlled and there aren't bad side affects. We went through three different meds before we found the right one for my teenager. Our 2 y.o. is currently on two different meds trying to control his seizures.

If your daughter is really struggling with this because of the neurological impact, you can ask the school to put her on home hospital. That way they can send a teacher out to the house. If she's strugglin with it because of the emotional aspect of it, then only time and learning to cope will help. This is a tough time for teenagers when something like this happens since they don't want to be different than anyone else. Also the fact she will have to wait to get or have to give up her driver's license sure doesn't help things I'm sure. Oh, the neuro talked to you about that right?

You can contact your local health department and they can have a public health nurse come out to help find something in your community to help your daughter with the emotional aspect of it.

Get an IEP in place asap. Contact the school office and request one, they must respond. She might need home and hospital, a service where home/hospital bound students have homeschooling with a teacher. Your daughters teachers will appreciate knowing why she is missing their classes, and she will have help keeping up in school.
Learn everything you can about her illness and share with her. She will appreciate your honesty. Let her be involved in the decision making process, she will buy in to the changes. Best of luck.
A mom and a high school teacher.