college bound teen w/ epilepsy

[Little a]

Hi everyone! Just joined the forum tonight and wanted to introduce myself. My 18 year old daughter was diagnosed in March 2011 after having a grand mal seizure. She takes 2500 mg of Keppra with very few side effects, but continues to have breakthrough seizures every few months. She has had at least 3 different types of seizures over the past year.

Since her seizures are still occurring, I am really worried about when she goes to college next year. She is planning on living on campus, and the college is only 45 minutes away, but I am nervous about the whole roommate situation. If I were the other girl, I might get really freaked out if I thought my roomie might have a seizure at some point. I feel like that is a lot to put on another teenager. One option is having our daughter live at home, but I feel like that is taking away from her college experience.

I need to contact the office of student disabilities this week to see if they have had this situation in the past. In the meantime, does anyone out there have any suggestions?

 

[valeriedl]

I didn't live on campus when I went to college and I also didn't have epilepsy when I went either.

What is her living situation going to be? Will she have a roommate? As I said I didn't live on campus so I don't realy know how the dorm situations work.

If she is going to have a roommate I'd make sure that she knows about the epilepsy and know's what to do if your daughter has a seizure. She sould probably tell some other people in the dorm also so they know what to do.

Expalin to them the types of seizures she has and what she does during them. They need to understand that there are more types of seizures than grand mals. Most people think that every seizure is one where you shake. Let them know when or if they need to call 911 during or after a seizure.

Have them know what types of meds your daughter is on. This is usually one of the thing that the paramedics/drs need to know right away. Have her print a list of them up, the names of the meds, dosages and when she takes them. Also make sure your name and phone number is on it so they can get ahold of you. Have it put somewhere that they don't need to go rooting around to find it, hung on a wall or something so it is always easy to find.

Other people on here who are in college can probably give you some more advice. Don't worry too much about it, I'm sure she'll do ok.

 

[epileric]

Welcome to CWE

Personally I think your daughter has to learn how people react to her seizures and how to handle them. Definitely one of the better places to do that is a campus where there are rules.

I would also ask your daughter first if she wants you to call the office of student disabilities. There is no use calling them if your daughter doesn't want their help of if she wants to see if she can go without their help first. I do think you should let her know about the office of Student Disabilities in case she wants to call them though.

 

[RobinN]

Your daughter has only been dealing with this for a year.... and a busy year at that. I went with my daughter and we talked with the head of the health dept. It was a great productive meeting and I think we all felt comfortable at it's conclusion.

As far at the roommate situation, I would think the room mate would have to be given the choice as to whether or not she can handle the situation. We never know what others are dealing with. Work with the school to find a compassionate person to that will be an awesome addition to your daughter... The Dream Team

I do have a question as it has been so recent that your daughter has been dealing with this... why was she put on meds after only one seizure?
You might take a few days and skim through my daughter's story. My daughter had different types of seizures when on meds, but they all went away when the drug was out of her system.

 

[JLogefeil]

Well this is what I think. I this is my baby going I collage I would talk to her and see how she feels about everything. I would talk to the school and see what thy can do for her maybe they can get her a roommate that understands, knows hat to do during one and can help her while she is there, get her a medical ID bracelet (I have one) and ya she might not want to wear it but it might save her life one day. Have her or one of the other co- workers tell the teachers that she has seizures so they know and look out for her.
I don't know if she's open about her seizures but if she just lives her life to the best she can she might help someone with the same problem. I m sure there's other kids out there who has the same things going on with them. She prob think she's the only one. If she does meet a friend with the same things going on maybe thy can look out for each other and they will be able to bond in a differnt way then with sher other friends.
I hope you understand what I m saying. I know this is hard but try to think of the good things to can do for other people there at school who have the same thing. I feel as though she will learn how to live her life the way she needs to with seizures. I know it's not going to be easy an yes she will have some hard time but I know she will be to learn different ways to live while have seizures.
Good luck my friend

 

[Krista2882]

I do have a question as it has been so recent that your daughter has been dealing with this... why was she put on meds after only one seizure?

Why wouldn't they put her on meds after the first seizure? Since a gran mal seizure is dangerous, you'd want to prevent another one if you could even if there wasn't an official diagnosis at that time..

 

[Nakamova]

Why wouldn't they put her on meds after the first seizure? Since a gran mal seizure is dangerous, you'd want to prevent another one if you could even if there wasn't an official diagnosis at that time.

A certain percentage of seizures are just one-offs. About 2% of adults have a seizure at some time during their life. Two thirds of these people never have another one.

Given the side effects of medication, it's usually left up to the patient whether or not to be medicated after a single seizure (assuming there is no EEG/MRI evidence indicating epilepsy).

 

[Nakamova]

Hi Little a, welcome!

Since the Keppra isn't providing complete seizure control, have your daughter's doctors discussed alternatives? There are other meds out there that might work better. It can also help to identify and eliminate any triggers that might be playing a role in the seizures. Triggers can be physical, physiological, and/or emotional: The #1 trigger is fatigue, but they can also be related to diet and nutrition, food sensitivities, dehydration, low blood sugar, hormonal fluctuations, infections/illness, photosensitivity, stress, etc.

The more your daughter can do on the preventative side of things, the better. I do hope the college can provide a supportive environment for her. If there is a Residential Adviser, that will make things easier -- he/she can help educate roommates and suitemates, and provide guidance & monitoring.

Best,
Nakamova

 

[Krista2882]

A certain percentage of seizures are just one-offs. About 2% of adults have a seizure at some time during their life. Two thirds of these people never have another one.

Given the side effects of medication, it's usually left up to the patient whether or not to be medicated after a single seizure (assuming there is no EEG/MRI evidence indicating epilepsy).

I know that some people never have another one, but I mean, while the doctor is still doing testing, trying to come up with a diagnosis, I would think the patient would be put on meds as a precaution. Then if the MRI/EEG doesn't show a cause/epilepsy, then the patient can be taken off the med or given the option to remain on it.
I'm still upset with my pediatric neurologist who I went to when I was 15 or 16 because he diagnosed me with simple-partial seizures, but never mentioned meds (I was getting a lot of seizures and they were affecting my quality of life), and he never mentioned they may get worse, but they did and eventually one generalized into a gran mal. That's when my family doctor started me on Dilantin while I waited for an appointment with a new neurologist.
But sorry, I don't mean to make this thread about me.

 

[Nakamova]

After an initial tonic-clonic seizure, a person is often put on an anti-seizure med in the ER until further diagnostics are done. That was my experience. But for simple partials many docs take a more conservative approach. There's usually less of a rush to medicate because there's no loss of consciousness. Given your age, your neurologist may have hoped for a scenario where your symptoms went into remission instead of escalating. I agree, however, that this doesn't excuse him from the responsibility of discussing other less promising outcomes, and options for treatment with medication.

 

[RobinN]

Krista - Typically a patient is not put on meds until they have had two or more seizures.
I am glad for you that meds have worked. They spun my daughters life into a very dark hole.
I could be upset for a lot of reasons, one of which was putting my daughter on meds early on. The meds caused her additional seizures. I have let it go, and followed my instincts.
Nutrition has been our answer. It took 6 yrs to find a doctor that agreed with that diagnosis. This is why, IMO meds should never be the one-size-fits-all answer.

 

[acpollard2010]

little a if the dr ran the tests came back positive then yes meds might be the way to go i dont believe foods alone will stop seizures sorry imo.but if she is still having seizures keppra might not be the way to go im not a believer in a lot of meds side effects bite and memory for some people and i would sit down and see what she wants to do.but 1 med aint that bad wish i was on only one.lol

 

[seizurrific]

As a 4th year university student that's lived both on and off campus with anywhere from six to one roommate(s), I can tell your daughter that it's going to be a very different experience from living at home but it's going
to be great.

Whenever I've started out, we've always had a sit-down type thing to talk about things we'd like to deal with in the apartment (who will buy dish-soap, washing-up liquid, toilet paper, etc.,) and as we ended I've always told them I needed to discuss one fore thing before we all "peaced out" (I've dubbed it The Sometimes-Awkward Seizure Talk! haha).

I basically tell them;

"If you could just stick around for maybe five more minutes, I wanna talk to you about something that's pretty important. I need to let you guys know that I have epilepsy. Before you think, "Whoa, she's gonna be a creeper or "it 's contagious!" or even "she's POSESSED!", let me just explain. It's .definitely.7 none of those things haha. Epilepsy is (brief explanation). There are over 40 different kinds of seizures and I experience four of them (well obviously however many your daughter experiences). My most common is the tonic-clonic seizure; you guys probably know it as a grand mal. Yup, they're the same thing! (Again, whatever ones your daughter experiences) I explain about my auras, what happens during a TC, show a first aid paper, and stick it on the fridge. I continue with, "like I said I have three other types as well (blah blah, explain explain). If you could help me out during a seizure that would be so great. I'm usually not one of those super needy people but during a seizure I have no control. Main thing that can be uncomfortable for usually everybody is if I lose bladder control. Doesn't happen super often but it can. When I come to, I am toyally able to clean up after myself, but if you could just be gentle, respectful, and sensitive until I'm fully aware, that would make me feel already a whole lot better The only time I would need your help ins seriously big way would be if I'm bleeding. Mouth? Fine. Fingers/toes? Fine. Anywhere else, not fine. Ambulance tiiiiime! Also if my seizure goes reeeeally long... Then it's a big time issue. Over 5 minutes? We're looking at some serious issues. Again, just wanted you to know that it's usually not a big deal but when it is, if you could help a sister out, that would be fantastic. Thanks so much for letting me chat your guys' ears off haha- if you guys have any questions or comments, I totally welcome them and definitely encourage them! I'm just gonna be unpacking so yup! That's the Sometimes-Awkward Seizure Talk. Woop! It's gonna be a party up in here!!"

Just keep if casual, humorous, and be relaxed. Epilepsy in the apartment is only as uncomfortable as you make it!

 

[Little a]

Thanks to everyone who has offered feedback about my concerns.

When I initially posted, I didn't want to write an entire dissertation about my daughter's history, but I should clarify something. She was not put on medication right after the grand mal that I witnessed last March. (Here comes the dissertation!) In the fall of 2010, my daughter was having a lot of trouble at the start of her junior year...crying before school and lots of anxiety. (And also let me add that she was identified as a 4 year old as having pervasive developmental disorder. Not definite Autism or Asperger's, but lots of the characteristics that you would find on the spectrum.) This had never happened before, and so of course we were worried that she was being bullied or that there was some other problem about school. She said no, but she was worried about the tough courseload that she would have as a junior. So, we switched out some of the harder classes, but the crying continued. When we asked why she was feeling so upset, she said that she felt like she was having panic attacks at night. She explained them as feeling shaky, not being able to move her legs, and sometimes falling out of bed. The doctor increased her Zoloft (she's been taking it for years to curb compulsive behaviors). Eventually her moods evened out and life was good. Let me add that there were times during the night when she would come into our room and ask to climb into bed (which she hadn't done since she was small) and one night she just kind of stood there like a zombie.

So it was one of these nights that she asked to get into bed, and not 15 minutes later I heard weird noises and felt the bed shaking. Turned the lights on and wow! my daughter is in the middle of a grand mal. The ambulance came and we went to the ER, and while the doctor was asking us about history, etc., I recalled the episodes that my daughter had described from the previous fall. A lightbulb went off and I realized that the "panic attacks" that she thought she'd been having were probably seizures.

In the next couple of days I was driving her to school, and she experienced a head turning seizure. I thought she was looking into the back seat, but she said her head was "stuck" and her eye was twitching uncontrollably. This lasted only a few seconds, and we promptly went back to the ER. They did a CT scan which came back normal.

Shortly thereafter, we met with a neurologist. Given the history of probable seizures in the previous fall, the grand mal that I witnessed, and the head turning episode, she did diagnose my daughter with epilepsy and prescribed the Keppra. All testing has been normal (sleep deprived EEG, MRI, overnight EEG, bloodwork). We have tried to identify triggers but there have been numerous breakthrough seizures. Next week we have an appointment to have another MRI with a super-sensitive Tesla machine to see if they can pick up any brain abnormalities.

So you can see why I am concerned about sending her off to college. I realize that the roommate selection process is huge, as I am anticipating further breakthroughs during this very stressful time.

Thank you for everyone's replies!