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gunner065

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Hi. I just found this forum and I thought I would join. I have a 14-year-old daughter that has been having epileptic seizures since June 2016. Almost all of her seizures have been grand mals.

Since June 2016, the longest time between seizures was 27/28 days. This only happened twice. Both times my wife and I were crushed when my daughter had a seizure. It was like going back to square one and starting over.

I think we are on our 5th medication (valproic acid). My daughter's neurologist was reluctant to put her on it due to the side effects but with no improvement with the other meds, we had to try it. Still don't seem to be having much effect.

The poor girl has suffered from skinned out knees, chin, broken tooth as well as dislocating her shoulders three times. The first time she dislocated her shoulder, it was the furthest thing from my mind. She was sleeping at the time so I knew she didn't fall. I took her to Emerg four days after due to having three seizures in a span of a couple of hours. After we found out the shoulder was dislocated, I did not feel very good as a father. Basically, let her suffer the pain. Again, a dislocated shoulder was totally out of this realm for me and my wife.

I guess I came to this site to maybe get insight/support/education? I talk to people at work (CDN military) but I don't think they are able to fully grasp having to cope with a child that has epilepsy.

This has been the longest introduction post I have ever made on a public forum.

Thank you
 
Hi Gunner

Welcome to the forum.
You'll find this is an amazing site with some great support and advice :)

I can't help you much in the eye of a parent as Im the one with epilepsy. I had my 1st seizure when I was 9 months old & had tonic clonics until I was 3. I was 21 years seizure free until my seizures returned in 2002 when I was 24 & then they were mainly simple/ complex partials with the odd tonic clonic. I had surgery in 2011 to remove scarring on my left temporal lobe which meant I was lucky enough to be 2 years seizure free until I started having partials again in 2013.

I often say that having a loved one eg child with epilepsy is just as hard on the loved one to watch them go through it as it is the person with epilepsy.
 
So sorry to read about your daughter and understand exactly how worried you must be for her, it's such an awful condition to have to face at any time let alone teenage years when she shouldn't have a care in the world.
I don't have epilepsy but my 33 years old daughter developed it last year and I worry about her so I can imagine how awful it must be to see your daughter struggling with it and you are powerless to help.
I know it's best to see an Elileptologist as opposed to a regular neurologist when dealing with this condition and I hope and pray a treatment can be found for your daughter soon so as she can enjoy her young life to the full. It's so unfair when it strikes anyone but it's evil when it strikes one so young.
 
Thank you CQ and Freda. I think the worst thing for me, not being selfish but just the way I feel, is the helpless feeling of being a dad and not being able to do anything to help my daughter. I try to treat her normally but being on edge at all times probably don't help my daughter. If she drops a brush or makes any sound out of the blue, I am rushing to see if she is all right. My daughter gets somewhat frustrated at me for being this way and being overprotective. This I can't help. Also, at such a time in her life, which I think is a formative time due to her young age, what is this doing to her mentally? She had two grand mals yesterday in a 6 hour period and from experience, she would have had more had we not given her Lorazepam (atavan). Of course, this makes her sleep for extended periods of time, drowsy, uncoordinated and unable to go to school. Takes a couple of days for this to wear off.

My wife and I try to stay strong for our daughter, but it is starting to have an effect on us mentally.
 
Hi Gunner,

Welcome to CWE! Just like your daughter I've had seizures since I was 10 yrs. old and when I was her age I had many more seizures that my Dr. couldn't get under control and a lot of that had to do with my hormones changing each month. I also took Valproic acid (Depakene) and it helped me a lot to control my absence and complex partial seizures but I then lost 70 lbs. while on the drug so I had to go off of it.
My advice to you is to keep track of your daughters seizures get a calendar and write down what time her seizures happen along with the type of seizure. Also tell your daughter to write down when she starts and stops her monthly cycle, by doing this her neuro may see a pattern in her seizures. I often have more in the fall and winter
compared to spring and summer and that's because there's a lack of serotonin this time of the yr.
You may want to ask her Dr. to do a DNA test on her this will show the amount of enzymes in her liver along with her body chemistry and then the Dr. can match that up to the best seizure med for her with the least side effect. When they did my DNA test they found out I was drug resistant so my Dr. had me start using CBD (med. marijuana) and I am amazed at how it has decreased my seizures. I used to have over 100 seizure a yr. but it's been cut back to about 40 less a yr. and the seizures aren't as serious as they were before.
If you can get your daughter to an Epilepsy Center and see a Epileptololgist you may get much more help than seeing a neuro. An Epileptologist specializes in epilepsy and I know since I started seeing one they were able to tell me the cause of my seizures, I had surgery to reduce my seizures and I'm on the least amount of meds in 46 yrs.
I wish you and your family only the Best and May God Bless All of You!

Sue
 
Thank you CQ and Freda. I think the worst thing for me, not being selfish but just the way I feel, is the helpless feeling of being a dad and not being able to do anything to help my daughter. I try to treat her normally but being on edge at all times probably don't help my daughter.. My daughter gets somewhat frustrated at me for being this way and being overprotective. This I can't help.

I can totally understand as my Mum was protective of me with my epilepsy especially when my seizures returned when I was 24. When my seizures returned I had already moved out of home & was living 30 mins drive from my parents.

After that my seizures returned my Mum liked me to ring her 3 times a day (in the morning, if I went out i rang when I came home & at night). This used to drive me insane but I also knew she was doing this because she was worried and there had been a couple of times she had been called to say I was in hospital because of a seizure so I could understand. My Mum also came to all my neuro appointments before my surgery so she knew what was going on but she had a habit of talking for me. She was partly to blame because she just tends to talk over me and my father but also my old neuro would ask me questions then ask mum as well (mainly if i was stressed as stress is always an issues for me).

After the surgery I told Mum we were cutting back on the phone calls to one a day. I also told her that I wanted to start going to my neuro appointments on my own as there was no need for her to come anymore.
She agreed but it did take her ages to adjust to the changes.
The hospital where I had my surgery and now go to the epilepsy clinic is 3 - 4 hours each way, I started going to the neuro after my two year checkup. I usually get the early train down, go to the clinic see the neuro and the neuropsychologist then get the evening train back. I usually ring my mum after I have finished at the epilepsy clinic to give her an update on how my appt went.
 
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I have epilepsy and I can tell you about some of the things that I had to deal with concerning my parents.

I had my first seizure when I was 27, I'm 41 now. My first seizure was very bad. I had to be put in a coma for almost a month because by brain wouldn't stop seizing. After I was brought out of the coma I had to stay in the hospital for over 2 more weeks before they they found some meds that were working and I wasn't seizing as much and the seizures weren't as bad that I was able to come home. I was still having at least 1 seizure a day, usually more, when I came home. It took a few years before they found the right combinations and dosages of meds and a VNS to get me to the point where I'm having on average of 5 seizures a month now.

I was living on my own before I had epilepsy but had to move back home and my parents treated me like a child, almost a baby. They wouldn't let me out of their sight. If I went to the bathroom my mom would sit outside of the door. If I took a shower she would come into the bathroom while I was in there. I wouldn't be surprised if she sat in the bedroom while I was sleeping. If they went away and I didn't go with them I had to stay at my grandparents house, who live next door. When I went down steps one of my parents would go in front of me and the other behind. I couldn't pick up anything sharp. If we went to the store I had to hold on to the grocery cart. The list goes on.... I got sick of it and finally yelled at them and told them they needed to get a child leash!!!!

After time and seeing me have seizures these things let up. My dad was actually the one who started it. The two of us went to the mall and he told me he was going to sit in the food court and I could go walk around by myself. He said that he was still going to call me every so often to make sure I was ok and I was fine with that. Heck I could be an adult again!!!!! He let me go across the street to get the mail, sometimes he watched and sometimes he didn't. A little while later my mom started letting me do these things. They would still come running if they heard a noise but that stopped after a while too.

I got married about 3 years later and moved in with my husband, we live next door to my parents. My husband acted the same way as my parents did at first, I think it was because he was still new to seeing me have seizures. After about a year, and many seizures later, he understood what it was like. If he hears a noise he'll yell from the other room, like today when I dropped the shampoo bottle while I was in the shower, if I was ok. If I don't answer him then he'll come check on me.

He works night shift and I text him when I go to bed at night and when I take my meds in the morning which if fine with me because he knows I do a lot of house work while he's gone at night and I have had seizures in my sleep. While he's at work might call to tell me something and if I don't answer or text something that needs a reply then he'll call my parents to check on me to make sure I'm ok. Only a few times I've been having a seizure but usually I just won't hear the phone ring or text beep, like the other night when I was running the sweeper.

I don't know if you let her stay home alone, it's ok to do this, but there are probably things that you don't want her to do while you're gone and let her know what they are. Don't make it EVERYTHING and that she has to just sit in a chair and watch TV until you come home. Being 14 she might like doing household chores but you can have her wash dishes, wash clothes, clean the house and things like that. You can call or text her every so often, maybe every hour or 2 don't do it every 15 min, just to make sure she's ok. The main thing I won't do while I'm home alone is cook on the stove or in the oven. I've had several seizures while I've done this. The smoke alarm had gone off a few times and my husband will come into the kitchen and find me having a seizure while something is burning and the kitchen is full of smoke.

I've gotten a lot of help from this forum. I might think that I'm the only one that things are happening to and when I ask I find out there are a ton of other people that it happens to too. Your wife might learn if she joins or if you tell her about things. Something seizure related might be going on with me and I'll tell my family about what I've read on the forum and it makes them feel better.

I know this is long but I hope I've given you some good advice. It's nice to meet you!
 
Hi & welcome. I've had epilepsy since childhood. It went undiagnosed until I had about 4 tonic clonics in 1987. An EEG done after that helped recognize the weird feelings I complained of as simple partial seizures. About 18 years ago I suddenly began having complex partials, too. They have been particularly dangerous for me.
My parents--mom, especially, are very protective. This despite my being married with 2 sons--1 who's going to start college! Both of them understand everything about my complex partials, & check to make sure I'm ok if they hear a loud noise.
 
Hi Gunner,
Welcom!! Don't be too hard on yourself. Seizures as you know are unpredictable so you really never know when one will occur. I have tonic clonic (grand mal) seizures that start with complex partials since age 12 and I am 56. It is tough on the parents and those around them. I see others suggested your daughter go to an epileptologist and I highly recommend that, too. They can do tests and know medications so well. I travel by train for 2.5 hours to see mine in Chicago at Rush and it is so worth it. They gave me Depakote a few years ago which is an older medication and also in the family of Valproic acid and it was one that finally helped with seizures. I also take Carbatrol ER and have a Vagus Nerve Stimulator. The VNS is something to look into. There are pros and cons. I recently had a new one implanted this past Spring.

I think it is so normal to run to your daughter when she drops something etc. If you could wait a few minutes to listen and not run that would probably help you and your wife and your daughter. It will give her some more independence and will lower your anxiety some. She probably needs that and so do you and your wife. I am guessing she doesn't have a warning she's going to have a seizure so that is why she gets injured.

It must be hard to watch. Be gentle with yourself. My parents used to worry all of the time and it's normal. They also gave me space and asked me what I needed. I found my mood changed with medications up and down and with the changes in the seizures. This was 47 years ago so they know more today then they did then.

Stay with the forum it is really helpful. Your daughter might want to talk to someone as well. I know as a young adult it was difficult to have seizures and be that age. Thanks and feel free to ask me questions. Jeanne
 
Hey Gunner, you've gotten some great advice above, just wanted to add my welcome. :)
 
Hi Gunner,

I'm in exactly the same boat as you. My 15 year old son suddenly started having tonic clonic seizures on Oct 2017. Me and my wife are slowly coming around to this however it has been a very stressful few months.
He has had 5 seizures since October mostly in his bedroom. It has devastated both of us. However we will not let this get us. Like you every-time we hear a noise it's panic set in and we rush upstairs. My son is also on Sodium Valproate (500mg twice a day).

So far he has not had any side effects but it's early days. You are correct about feeling helpless. It is so sad to watch them have the seizure and all you can do is comfort them as best as possible.

His last seizure was two weeks ago when he was just about to go to the cinema with his friends. I guess the excitement of it was too much and his brain went ( I suspect he was meeting Girlfriends). I was in the next room and heard him Groan then crash to the floor.

Well he never made the cinema and I could hear him crying later that night very upset.

It broke my heart.

I pray your daughter can live a normal life. I hope we can get through this with as little problem as possible,


God Bless
Patrick
 
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Hi and welcome here!
For one thing, let me quote Patrick from above (not just singling him out, because I have come to believe that this is the sense many without epilepsy have!) "I pray your daughter can live a normal life. I hope we can get through this with as little problem as possible."
As far as her psyche is concerned her life is normal. I can't recommend that people interact with a just-postictal mind with overbearing "we are so concerned with your normality! You have startled us! You have made things abnormal!"
I had a seizure for an EEG at the hospital. I recall the epileptologist coming into my room at some point to tell me I had a seizure. I was basically surprised! I think they just know better how to treat the ictal period since having had so much experience and knowhow regarding the human brain levels etc. Sort of like waking someone up by shaking their bed vs. just letting them wake up. I have come to consider that it could be very easy for a lot of people to want to wake up a post-seizure person ASAP and start bombarding them with panicked (which, in a way, is understandable) questions about whether or not they're ok. It has largely been coming to my senses though that panic levels really tend to stick there, and sort of scar the psyche. A "why?!? why?!? what did I do?!?" sort of mindset sticks there. In ways I've tended to think it's good to move a seizing person to their side, and hold them and watch them (maybe even make a cellphone camera movie of them if they're curious!), and then just sort of leave them alone for a bit to let them wake up on their own, and not start with panicked "are you okay? are you conscious? you're scaring me!!" type of interaction right away...
yadda yadda yadda... consider these things.
And definitely welcome here to this forum.
In a large way the people on here are my only friends and we span the globe.
I've been on here for years and have had tonic-clonics since about 2007, but I had surgery in May (right at my birthday, oddly timed and psychologically boggling in ways "happy birthday new me!") to have left temporal lobectomy.
But anyway.
Here's to sending peace and love.


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