17-yo daughter diagnosed with TBI Epilepsy

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My daughter has been diagnosed with traumatic brain injury epipelsy after being in a horrible car accident a couple months ago. She had several grand mal seizures for about 18 hours after the accident, had no seizures for 2 months and now is having seizures again. They were daily grand mal for about 10 days (up to 4/day), then none for 7 days, then had 6 back-to-back tonic seizures last night.

It has become a reality that this is our "new normal", but how do we "re-normalize" all of our lives? We have been scared to leave her alone, haven't let her go to friend's houses (or anywhere), but we know this can't last. She is a social butterfly and is already getting depressed by her diagnosis and not being able to socialize. Do we just suck it up and come to the realization that at some point she will have one while alone, so we shouldn't be smothering her?? Do we continue to keep her supervised for a certain period of time of her being seizure-free? Even when sitting on the couch, it seems she can hurt herself falling onto the floor off the couch during a seizure. If she's in the bathroom too long, my husband or I are banging on the door asking if she's ok...how do we give her, her privacy and keep her safe?

This is the scariest thing we have ever been through. There are so many unknowns and we feel so helpless. Any info or guidance is welcomed with regards to how to live day-to-day with a teenager who is newly diagnosed.
 

masterjen

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Hi, and welcome to CWE!
Sorry for what your daughter and your family have been through and are going through. What did the MRI and EEG show? What anti-seizure medication is your daughter on? Obtaining improved seizure control will go a long ways to helping improve everyone's piece of mind, and therefore should be a key priority at this point.
Teenagers seldom want to be the center of attention and want to be "normal" even when they have no medical condition, and your daughter may be wrestling with feelings that she will never be "normal" (which is not true!). Try to find ways that she can participate in activities as safely as possible: suggest she have 1-2 close friends over (preferably those who know about her seizures) and encourage her to explain how they can help her if she has a seizure, have a Netflix party with her friends where everyone has the pillows and cushions on the floor to curl up on (and keep your daughter safe while you are not in the room).
Also, try to make her private place (presumably her bedroom) as safe as possible. If she has nocturnal seizures this may mean putting a queen mattress right on the floor, moving hard furniture like nightstands away from the mattress, ensuring a clear passage way from her room to yours and to the bathroom.
Others here will offer suggestions as well, and I know there are members who have children with epilepsy so they will chime in soon.
As I said above, though, obtaining seizure control with medication sounds like an important first step that needs to be focused on. The rest may fall into place naturally. Keep us posted on how your daughter and your family is doing.
 
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Thanks masterjen,

She cannot have an MRI, due to her having a spinal cord stimulator for chronic regional pain syndrome. Initial EEG & CT scan were normal. She had a sleep-deprived EEG today (that was fun---much sarcasm). Since she had the back-to-back seizures last night, dr increased her meds & she is now on Keppra 1500mg twice a day & Vimpat 100 mg twice a day, as well as Ativan (only for 3 days). She isn't self-conscious about the seizures, she's not worried about being embarrassed. All her friends have been over the past couple weeks and are very supportive or her & all have witnessed at least one seizure. She is not use to being home...none of us are use to being home. We aren't much of homebodies. We are usually a very active family...bike riding, going to the gym, skateboarding, surfing and she rides motorcycles. All of this, of course, we haven't been doing. We have watched A LOT of Netflix & movies and we're all going a little stir crazy. We've done short quick trips out shopping just to get out. I'm most scared about leaving her alone and going to work & letting her go to friend's houses.
 

masterjen

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I completely understand the going stir-crazy part! See how the recent increase in medication will work. If it doesn't then it is possible further dosage adjustments or even a change to a different medication will bring seizures under better control. Does she have a warning that a seizure is about to happen? If so that can be a huge help since she would know to get to a safe area in case she does in fact have a seizure. Identifying seizure triggers may also help bring seizures under better control (eg. caffeine, lack of sleep, stress/anxiety, flickering lights, etc.), which is how keeping a seizure log where you and she write down what she was doing and how she felt just before the seizure.
In the meantime it is a smart decision in your part that she not go into the water, skateboard or ride a motorcycle. As for going to the gym, that may still be possible. If she exercises in an open area where she will not injure herself (eg. the stretching area or the aerobics floor if no class going on) with no weights, benches or other objects around she could injure herself on but lots of mats on the floor where she is. There are many body weight exercises she can read up on how to do. This way you can all go to the gym and she can have some independence to exercise on her own and you can keep an eye on her.
Not sure where you live, but you could spend time outdoors walking along a trail or in a park as a family (speed walking is great exercise).
No reason you and the rest of the family cannot do some of the activities that you want to do on occasion, and leave your daughter at home with a reliable friend who knows what to do should she have a seizure and will call you if that happens. That in itself will give your daughter some feeling of independence.
As time goes on and seizures come under better control, family life will regain at least some normalcy but it can take time.
Wishing you the best!
 

Cint

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It has become a reality that this is our "new normal", but how do we "re-normalize" all of our lives? We have been scared to leave her alone, haven't let her go to friend's houses (or anywhere), but we know this can't last. She is a social butterfly and is already getting depressed by her diagnosis and not being able to socialize. Do we just suck it up and come to the realization that at some point she will have one while alone, so we shouldn't be smothering her?? Do we continue to keep her supervised for a certain period of time of her being seizure-free? Even when sitting on the couch, it seems she can hurt herself falling onto the floor off the couch during a seizure. If she's in the bathroom too long, my husband or I are banging on the door asking if she's ok...how do we give her, her privacy and keep her safe?

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I know this can be very scary for parents. We've been there. I had my first TC (grand mal) seizure while home on Easter break from college. I had just stepped out of the shower and felt this "weird sensation" overcome me, so I sat down on the toilet seat for a second. I thought it had passed, but when I stood up, that is the last thing I remember. I went into a TC seizure, somehow fell on my back and hit the hot water spicket, and then was lying there long enough to suffer 2nd and 3rd degree burns. Spent two months in the hospital from the burns and was diagnosed with E while there. When I finally was released from the hospital, my parents didn't want me out of their sight and were always nervous when I headed for the bathroom. But the seizures were controlled initially, and I did get on with my life. I got married, moved away and had two children.
Make sure you have your daughter see the best epileptologist available and find an Epilepsy Foundation to offer support for teenagers. Education for everyone on what she can/cannot do is the key. Obviously, she won't be able to drive now, but you'll be able to get around that. And as masterjen said, she won't be able to go into the water or by herself, but eventually she can ride her bike with a helmet and skateboard again.

Click here for info on E and safety in the home:
http://www.epilepsy.com/get-help/staying-safe
 
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