New--scared/lost helping my daughter

[karenb68]

Hello all. My daughter had her first seizure about 8 weeks ago and nearly drowned in the process. With no apparent family hx and clear eeg, two neurologists both thought it would be an isolated incedent. About the time I let my guard down, she had another one two weeks ago. Looking back now, she says she can remember off and on in the months leading up to this having moments of confusion and lost time. She is 12 years old, at the beginning of this past school year she was an honor roll student, falling to Cs around February and even some Ds by late March. The doctor wants to do another (3rd) eeg and possibly even a 30 day ambulatory eeg to see if they find anything. MRI/CTs are clear. I am trying to read everything I can but two of my big concerns are how to help her life be as normal as possible, and getting her school to work with us.

Since the first seizure, she has been diagnosed as depressed and is seeing a therapist, which surely can't hurt. I have been hovering, yes. The first few nights after each one, I have had her sleep in my room to keep an eye on her but we reached an agreement to use a sound monitor in her room so I'd hear her if she has problems during the night. We check on her every few minutes unless she has a friend over in her room that can call us if there's a problem. I know she feels terribly babied right now, but I am scared for her. How do other moms do this and still let their kids keep some independence?

Also, after her first seizure I talked to each of her teachers in person, letting them know what to watch for and that instances of "spacing out" could very likely have been absence seizures. Almost half of her teachers refuse to accept any explanation other than that she is willfully ignoring them and being difficult. I had one teacher yelling at me in the hall in front of students and other teachers that she was "doing her part and was tired of repeating herself two and three times", my daughter "just needed to get it together." How on earth am I supposed to trust her school to take a seizure seriously when this is their attitude? She has also been diagnosed with a clotting disorder so any bleeding injury could be serious.

I'll keep reading on the great info here but would appreciate any insight into these issues or any suggestions in general. Thanks and
God Bless,
Karen

 

[karenb68]

...another thought

I should also mention that she has had extremely heavy and frequent menstrual periods, which has now been blamed on von Willebrand disease. After the first seizure, my gynecologist prescribed low dose birth control to help control the cycle and also to boost VW factor in the blood. It is difficult to say how her seizures have timed with her cycle because she often goes one week on, one week off her period. Time will tell if the pill regulates that any. The two seizures I know of her having were about 6 wks apart.

 

[epileric]

Hi Karen & welcome to CWE. I'm the one with epilepsy so I can't help you from the point of view of a parent but regarding the teachers refusing to acknowledge or understand what seizures are, I have found that to be a common attitude if it's not convulsive (sadly). There is at least one person on this site (can't remember who though) that lectures in schools about epilepsy-both students & staff. You might want to look up a local epilepsy foundation & ask if someone like that is available & try to get the school to let them speak there. Also, is there a school nurse? If so she should know about non-convulsive types of epilepsy & might be able to discuss it with the symptoms with the staff.

Meanwhile, get comfortable here & check the site out. The members are very supportive & there's lots of info as well.

 

[epileric]

also

As a suggestion you might want to mark her periods, seizures, sleep times, meal times and what she eats/drinks & anything unusual if you're not already. It does make it easier to find patterns & things that might trigger the seizures that way.

 

[sandi]

Welcome

Give yourself a big hug and her too, this is hard.
When my son was suffering from a bout of Depression and got treatment, because he was a male and Columbine had happened Teachers were sent to the house.His friends still came over and we eventually joined a Homeschool group for daily activities- Later he went to a local Junior college and complete his GED and Got his AS.
Prayers

 

[Nakamova]

Hi Karen, welcome!

Is there a way to talk to someone in administration at your daughter's school? These days, for legal reasons alone, schools should be vigilant about the health care needs of their students. I agree with others above to see about public resources/advocates who might help.

Estrogen imbalances can offer trigger seizures, as well as circulatory problems, so those two factors alone may be contributing to lowering her seizure threshold. Some people with catamenial epilepsy (i.e. linked to their periods) are treated with progesterone cream to offset the estrogen levels. Perhaps you could ask you daughter's doctors about this.

In the meantime, I send a big hug your way. It sounds like you are doing all the right things. It's natural to "hover", but at some point you and your daughter may need to negotiate a level of supervision that works for both of you. hope you continue to be persistent about getting her school to be properly responsive. Hang in there!

Best,
Nakamova

 

[karenb68]

thanks

Thank you both, yes I will start a journal of what's going on, now that I know they're likely to continue. I have started cautiously bringing up the subject to her about home schooling but that's not what she wants--I feel like I have to choose between protecting her and letting her have the life she wants while being subjected to the cruelty and misunderstanding of so called professional teachers. Sorry I know that sounds bitter but I am just in awe that people would judge a medical condition in this way.

 

[karenb68]

Thanks Nakamova. The principal seemed maybe a little more cooperative than some of the teachers at the end of the year, a new principal starts this fall. This is a backward small town and anything that implies trouble causes more trouble, if you know what I mean. So I have to tread cautiously as long as we live in this town.

 

[Bernard]

Hi Karen, welcome to the forum. :hello:

There are several discussion threads here related to dealing with schools:

http://www.coping-with-epilepsy.com/forums/tags/school.html

HTH!

 

[sandi]

Homeschooling

I was lucky that I homeschooled my children when they were young so there wasn't much fuss- They went for sports in High School.
But I helped quite a few parents transition their kids.It is such a hard age as well,you want to protect and let them fly.
Homeschool groups many times as so socially active and the kids learn the freedom that comes with it.Sometimes a gradual approach works , sometmes it's sudden do to severe illness.
Many parents are fed up with Paying all the bucks and putting up with the BS in Schools. (No offense intended to any teachers) It is more the Beaucrats that doesn't allow flexiblity.The Stereotyping hysteria that went on with my son was incredible- He showed no violent signs -I just ask for their help in watching him!
My grandchildren use a very good Company called Sonlight -It more of a reading or Literature Based.
Some States have their own Home school Based Learning - So a child can move back and forth between School/Home.

 

[sandi]

small town

It matters not! Wisconsin isn't much better. I lived all over the US and the schools are all screwed up in their own ways.

 

[karenb68]

I've been reading here and elsewhere for several days...so much to take in. A few questions for anyone who has thoughts:
My daughter said she had no reaction at all to the flashing light sequences in the two EEGs she's had done--in those who are photosensitive, is it a consistent reaction? I'm wondering because, at 12, she still likes to watch the July 4th fireworks with friends and I'm wondering if she's likely to have a problem.

Looking back and reading these last few days, I'm seeing the Restless Leg Syndrome and migraines apparently have links--I have both in the last few years and her brother had migraines when he was 4-6 yrs old. Neither neurologist asked about these types of things--only "seizures" which I had identified only as grand mals in the beginning of this experience. Is this relavent then to mention to them? I've tried to tell them everything I can--even that both days, she reacted with a rash to new, unwashed clothing (both doctors agreed this was unrelated).

I'm also very interested in the use of neurofeedback and dietary changes--are these useful in all types of seizure disorder or just specific types?

In a meeting last week with on neuro she mentioned that she thought my daughter is having partial complex seizures. She gave me a pamphlet to read about them, but I am confused. It describes PCs as often appearing conscious and ambulatory, but unaware and often having personality changes like aggression--I really don't see this. Unfortunately, the first time no one knew to look for anything and she seemed "normal" but tired, the second time I was out of the room when it began. When I see video clips/descriptions of tonic/clonic, this is what I recognize: Stiffening, shaking rhythmically, unresponsive but eyes are open, etc. What I'm reading about PC frightens me because I've found remarks about patients unknowingly walking into traffic or other dangerous behaviors. I'm having a real time giving her space and privacy when my mind keeps thinking of horrible scenarios.

 

[lindinig]

I would be pushing to get your daughter on a 504 plan. This is an individualized education plan intended for kids with disabilities and chronic illnesses. My son is classified as "other health impaired". You have a legal right to request one, and if the school gives you a hard time, you can hire an advocate to fight on your behalf. I was fortunate, in that my son has been on an IEP since he was 3, for behavior issues, so when he was diagnosed with epilepsy, we just revised it with accommodations for when he has a seizure. The school has been pretty willing to work with me up to this point.

If the teachers start giving you a hard time, I'd be talking to the principal, and the superintendent. Stand your ground, because even though they may be absense seizures, your daughter is in no way lazy or doing this on purpose and she can't control it. It took my son's 7th grade teachers all school year to realize the impact a few seconds of an absense seizure had on his ability to function, until the last week of school, when he had one in class. My son doesn't recover from them quickly. It usually takes him 5 days to fully recover, which means he misses school. I spent the better part of this year explaining to his teachers that I will help him make up his missed work, but he is incapable of doing it during his post-seizure state. At the beginning of every year, I get his team of teachers e-mail addresses, and start sending them e-mails from the first week of school so I can stay on top of his homework assignments. They get to know me very well within the first few weeks.

 

[epileric]

I've been reading here and elsewhere for several days...so much to take in. A few questions for anyone who has thoughts:
My daughter said she had no reaction at all to the flashing light sequences in the two EEGs she's had done--in those who are photosensitive, is it a consistent reaction? I'm wondering because, at 12, she still likes to watch the July 4th fireworks with friends and I'm wondering if she's likely to have a problem.

I forget the percentage of epileptics that are photosensitive but it is rather low. Even those who are all have different things that might trigger seizures, some can watch movies but can't stand flashing lights, some can't go into wal-mart, others are sensitive the the flashing effect of the sun shining through the trees while driving down the road. It's a very individual thing.

Looking back and reading these last few days, I'm seeing the Restless Leg Syndrome and migraines apparently have links--I have both in the last few years and her brother had migraines when he was 4-6 yrs old. Neither neurologist asked about these types of things--only "seizures" which I had identified only as grand mals in the beginning of this experience. Is this relavent then to mention to them?

I can speak from experience that anxiety is often a side-effect of AED's & that might be the cause of the restless leg syndrome. I know people on this site have discussed a correlation between migraine & seizures but I don't know if it's been recognized by the medical community. I would mention it though, I'd rather tell them something they don't need (or acknowledge) rather than not tell them something useful.

I'm also very interested in the use of neurofeedback and dietary changes--are these useful in all types of seizure disorder or just specific types?

I don't think biofeedback is specific to any type of seizure. I know RobinNs daughter Rebecca has had a good experience with it.http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

What I'm reading about PC frightens me because I've found remarks about patients unknowingly walking into traffic or other dangerous behaviors. I'm having a real time giving her space and privacy when my mind keeps thinking of horrible scenarios.

I can only imagine how scary it is for you, or was for my parents, & I do lose awareness but still appear alert. Interestingly enough certain reflexes still work during a seizure. Occasionally during a seizure my leg will stiffen in a way that I will lose balance but when I come out of it I'm either holding on to something or squatting so that I don't fall down. I would suggest you watch your daughter closely during her seizures so both you & her can define exactly how her seizures effect her, they may not be as bad as you think.

 

[karenb68]

another one...

She just had another one. She had gotten up unusually early this morning (by about 2 hrs of normal wakeup time) so I had her take a nap. she had just woken up, sat at the kitchen table and immediately started seizing. It only lasted about 30 seconds, then took another two minutes or so to become aware again. Damn this, each time I pray she'll stop having them and this time it's only been 21 days. I called the neuro and she wants to start her on 300mg Trileptal twice a day. I'll buzz around as I'm able reading up on this. I really did not want to put her on more medications but now I feeled scared into doing it. I hate this.

 

[RobinN]

You can read Rebecca's story (linked down by my signature) and learn a bit about our rollercoaster ride. We gave up after four trials on meds, and moved toward nutrition, neurofeedback, and supplements. Life is improving. Not a quick fix by any means. We have had to put up with seizures while we are attempting these alternative therapies. I have begun to have support by the medical community that we are working with, so I gain strength to continue following my heart and intuition.

A journal was what has helped me connect the dots in my daughters situation.

 

[crazychick10793]

hi karen,
i know exactly what your daughter is going through, i also started having grand mals at 12, and my neurologist told me later i was probably having absence seizures all my life, and it's not all that uncommon for children with absence seizures to start having grand mals at the height of puberty, which for girls is sometime in the few months after your first period. did your daughter get her period recently?
i too was told that it was an isolated incident, and had many weird things happen until last december, where right before christmas break, i had a grand mal on the bus on the way home from school, thank goodness someone was sitting near me and was able to catch me and alert the bus driver.

seizures are difficult, and i know you must be very concerned, but showing her how worried you are like that can make her depressed and very stressed out and stress only causes more seizures. set some limitations, but don't overinvade her life or her privacy. for example, have a do not disturb sign instead of a lock, and respect it.

also watch out for caffine in her diet, i know when my friends and i were 12, we would gulp down 3 bottles of pepsi without worrying, but for epilepsy that is dangerous

does your daughter have an account here, or an email, or something of the sort? if so, send me a pm here and i will give you my account, you and her can talk to me any time you need some advice.

take care and good luck with treatment,
Vicky

 

[lorianng72]

im sure the teacher has a boss so speak with her boss...i would not put up with that.

 

[amytruck]

Hi Karen I am sorry you all are going through this. Now that I am a mom I can understand what my parents went through and still go through with my epilepsy. I had seizure at age 1 with a high fever and not again until around puberty much like your daughter. I am new to this forum but someone suggested journaling and I agree. Write everything down. You may see a pattern that will help. I do not have grand mal seizures very often but after looking at my calendar I saw that they happened when I was only on my period. The best thing my parents did for me was to let me be as "normal" as possible. When I woke from a seizure my mom was the calmest person in the room. I never knew how scared she was. Your post pulled at my heart and you are in my prayers. As far as school goes... I am a teacher. You and your daughter have rights. You need to document your conversations and make sure that the school has official docs from the dr not just from you. Then they have to write a plan for her and accommodate by law. Go to the school board if you have to.

 

[karenb68]

Sorry I'm so slow responding, I've been reading Rebecca's story, which prompted me to order the Jim Robbins book, which I've just finished. I live in a very rural area, and would love to give the neurofeedback a try, so far the closest practitioner I can find is 2+ hours away.
Thank you, Vicky, I will def give her the info, that is very sweet. I'm getting a little better at giving her space, and it seems about the time I let down my guard she has another one
She has had another one since the 6/28, on August 1. This time she was at a friend's house that was not prepared for it. She was going to church with some friends that had been briefed on what to do, then they stopped at another girl's house to change clothes where it happened. She dropped from a standing position this time, which really scares me, but thankfully only busted her lip. She had stayed up kinda late the night before but is still taking the Trileptal. Doc doesn't want to change meds just yet since it could have been a fluke from not enough sleep or her forgetting her pill and not admitting it (she was not at home at the time).
The range so far is three to six weeks. Not regular enough to tie them to her menstrual cycle just yet. Looking over my notes, I discovered that the last three times, she had an unusual (for her) emotional angry outburst exactly six days following the seizures. She becomes irrationally angry, usually with her dad, and is unprovoked. Not sure what to make of this yet. Later, she apologizes and mellows out. Her doctor has diagnosed her as moderately depressed too, not sure what started first or if one's causing the other.
We met with the school staff member who does 504s the other day, she seemed understanding and patient. I mentioned the problems with staff last spring but am trying to start new and give this year's teachers the benefit of the doubt; we'll see.