Our Story

[Jack's Mom]

In October, 2012, when he was 19, he had his first tonic-clonic seizure. It happened around 2 am. He had gone to bed about 30 minutes earlier when my husband and I were awakened by strange noises. We both went in his room and realized he was having a seizure. The convulsions lasted 5-10 minutes. We took him to the hospital where they observed him for awhile and then sent us home with instructions to follow up with a Neurologist. He didn't remember anything until about 45 minutes after the seizure. He was sore all over for quite a while and did a number on his tongue. About a week later he had an MRI and EEG, both of which were normal. His blood test from the hospital showed THC, so they wrote it off to that, diet, sleep deprivation, and other things common to 19 year olds. He wasn't put on medication.

In May, 2013, when he was 20, he was sleeping at camp around 12:30 am, fell off his bunk, his head hit the cement floor and he suffered another seizure. This one was shorter and he remembers waking up on the floor. His body wasn't sore the next day, so I assume it was much more minor. His skull was fractured and he had a subdural hematoma, which eventually resolved, so the seizure was thought to have occurred secondary to the head trauma and unrelated to the first one, although we'll never know for sure. He had several CT Scans and other than the fractured skull and hematoma, everything was normal. Drug screen was negative. He was put on Keppra for two weeks.

Saturday morning around 1 am, he was showering and had just turned off the water when I heard shampoo bottles falling into tub. Then I heard him yell and soon the rhythmic noises like the first seizure. My husband had to break down the locked bathroom door and again we witnessed the seizure. This one also lasted quite a while and he was awake but doesn't remember about the first 30-45 minutes afterward. He was complaining of chest pain so they did head and chest CT Scans. The head CT was normal. The chest CT showed a fractured sternum, apparently caused by his chest muscles. He chewed on his tongue, but not as bad as the first time. His back is sore, and of course the sternum is causing him pain, but the rest of his body isn't as sore as the first time. They've now decided that he probably has epilepsy, and have put him on Keppra for 6 months.

So, he is supposed to be leaving for college in August (he delayed it for a few years while he grew up!). Since his seizures have been far apart, we won't know if the Keppra is working unless he has another one. The doctor has told him that he shouldn't be driving, which isn't an issue right now as his chest is too sore, but we'll need to figure out something when he goes to college as he'll be living off campus. The doctor also advised him to stay away from alcohol, which is difficult for a 21 year old in his college years. Has anyone out there had a child diagnosed with epilepsy shortly before he/she left for college, or even while he/she was at college? What do I need to know? I've spent plenty of time lecturing him about bad decisions that could kill him, but what else should I do?

 

[ToryMagoo]

Hi Jack's Mom :rose:

My name is Tory and I *got* Epilepsy at almost exactly your son's age.
I was going off to college. (I had 1st petit mal seizures, then had a Grand
Mal Seizure)<<< then they put me on Dilantin and Mysoline (Generic is Primadone) and I have not had a seizure for 30+ years (minus a group I was part of, who made me get off of my medication).

Thankfully my Mom jumped on it, and saved my life.

I just made a video about Keppra...which is posted under
"30 years successfully no seizures now my new doc wants me to switch to Keppra". ( I cannot post it myself, yet, due to rules here). Keppra was AWFUL for *me*. I'm not telling you to change *a* thing...but please do more research yourself. I met many people who said they were
exhausted while on Keppra (as was I, but I only did it for 2 days).

Just make sure to do what you're doing: Ask people, look up diff medicines, check the side effects. If your son is fine and seizure free--you're good.
Just warn him of the exhaustion as IF he gets that, I'd talk with your Doctor about switching to s/t else. (And some people have found Keppra successful, so I'm just giving you my 2 cents). Also, don't freak out...but two of the side effects I read about for Keppra were "Paranoia" and "psychosis". In my opinion, no one needs those, but certainly not a 20 year old. Again....this is just from a brief research I did, and my own personal experience with this medication, being on it for less than 48 hours. I do not mean that is true for all, as some people seemed to like Keppra.

Lastly....what I did when my son left for college, since I HAD been a Hippie, into many drugs, etc. I explained it ALL to him.
NO One is going to offer him "drugs". They say: "Hey man, you have a test tomorrow. Ya want s/t to help you stay alter later?" It's a dark, deep hole that he does NOT need to mix with his medicines. (I did and by the grace of God I lived through it). He needs to be proud of himself. He's not less than anyone. EVERYONE has their things ...whether mental, financial, sexual, etc.

The only difference with people with Epilepsy is it's physical, so *sometimes* people talk about it. I would suggest he make a friend at college who
a) Knows he has Epilepsy and is a safe person
b) Has contacts you want him to have to either alert the school and/or yourself IF he has a seizure.
c) Make sure he understands SLEEP is a *huge* part to help someone NOT have seizures.
d) Remember: it's an adventure. Help him grow with pride and dignity, knowing he is just as special as every other young person his age.

Good luck and much love ... :flowers:

Tory

 

[JaneC]

Hi Jack's Mom, my daughter is off to university in the autumn - she was diagnosed when she was 11 so I guess we're quite accustomed to having E in our lives. We can remind them of things like getting enough sleep, not drinking too much and ALWAYS taking their meds but when they leave home they really have to take responsibility for their own health.

It bothers me that often my daughter is unaware that things aren't right and relies on us to notice. Naturally, I am not sure how her flatmates are going to react to the fact she has E.

Make sure the college and wherever your son will be living are aware of the situation (assuming he is ok with that). We'll be having a meeting with the university's disability service before she goes, so her lecturers will be made aware she has E.

Also it would be good if you can arrange with your son to make regular contact, just so you know he is all right. I will need to strike a balance between constantly asking my daughter if she is ok and my need to know. Hope all goes well for your son.

 

[ToryMagoo]

Ya...along with what JaneC said: Set up a weekly conference (or whatever u want to call it: either via phone, or SKPYE but s/t live so you can see your child. I think this is *really* important, even if most kids will say they don't need that.

What I said is "*********I********** Need it And I also told my son
"It's non-negotiable. I want to meet with you every 2 weeks, and we have, for 13 years now. (He doesn't have E...it's for other reasons).

It's been great

Love to you all, :rose:

Tory/Magoo

 

[jh2]

i agree i have epilepsy and live by myself in a town far from my parents we set up weekly chats or phone calls and if i dont respond within a few hours my mother knows something may be wrong.(this regular contact has saved my life once.) i am also registered with the universitys disability service and have a few people/friends i can trust and my parents have their numbers too just incase.