First of all, you never lose the fear, you just learn to deal with it in a different way. Don't ever say your story doesn't compare to ours or anyone else's. This is YOUR son. You are allowed to feel this way. The way I cope is by loving my daughter every day and I know that one day, she will be seizure free. It is hard when you see your child having a seizure to be optimistic. My daughter was having 30-40 complex partials a day. But because it was my daughter, I was so hungry for information. I was online constantly, i went to the library, ordered epilepsy books. Everything I could think of. All of these things taught me that Epilepsy, though very hard on everyone in the situation, is not life debilitating. What handicaps the children most of the time is our reactions to the little things. Just love your son by being is biggest addvocate. Talk to the doctors, ask tons of questions. Don't be afraid to be down right annoying with the office staff, the doctor, and even the pharmacy. This is your kid, not theirs. My heart goes out to you because i know exactly how you feel. Just take one day at a time and thank God everyday for all the little things that make you smile.
God Bless
Your friend in the fight,
Nikki
Discussion Topic
How
Posted on 05/21/08, 05:41 pm
Hi,
I am a mother and my child has epilepsy. He has been diagnosed withbenign rolandic epilepsy, which means his seizures are in the night or as he wakes. In the main they consist of facial shakes and limb movement but he has had 3 grand mals. I read your stories and in comparison my sons epilepsy is nothing but to me it is everything. He is on tegretol, and we try and keep his sleep pattern good and limit tv etc. Unfortunately a recent tummy bug seems to have set his epilepsy into over drive. It breaks my heart, he is so brave and yet I am a coward who is terrified of the mornings. I wake early so I can be with him should he have a seizure. The cruel twist is that my younger son had seizures as a baby. He grew out of them as his brain matured but his seizures caused him to stop breathing so he was rescusitated upwards of 6 times a day. Now I have to watch my eldest sons seizures.
How do you cope, how do i lose the fear, what do i do. My heart is breaking.
I am a mother and my child has epilepsy. He has been diagnosed withbenign rolandic epilepsy, which means his seizures are in the night or as he wakes. In the main they consist of facial shakes and limb movement but he has had 3 grand mals. I read your stories and in comparison my sons epilepsy is nothing but to me it is everything. He is on tegretol, and we try and keep his sleep pattern good and limit tv etc. Unfortunately a recent tummy bug seems to have set his epilepsy into over drive. It breaks my heart, he is so brave and yet I am a coward who is terrified of the mornings. I wake early so I can be with him should he have a seizure. The cruel twist is that my younger son had seizures as a baby. He grew out of them as his brain matured but his seizures caused him to stop breathing so he was rescusitated upwards of 6 times a day. Now I have to watch my eldest sons seizures.
How do you cope, how do i lose the fear, what do i do. My heart is breaking.
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Reply #1 05/25/08 10:41pm
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Reply #2 06/24/08 7:02pm
I have gone thru the same fear. As I prayed I had an inspiration that if I surrendered the situation over to God, He could do more. No point in me trying to control everything. No point in me worrying all the time either. It helped stop the horrible fear I had every morning and I'm not taking Alka Seltzer any more. My body is finally coming in line with my new resolve. I'm feeling better and like Nikki said, I focus on the the good times and good things that make me smile. -
Reply #3 08/25/08 7:41am
Hi,
Your comments and fears about your childs epilepsy are so similiar to mine as I believe it is to most parents. My advise would be the same as the two stated above. I certainly slip at times and let it overwelm me but I also think that is normal as well because we love our children so much. My son plays organized hockey and soccer and I try my best to let him do everything his friends do. His balance,sight and coordination are not great but he doesn't realize that and just enjoys the sport. -
Reply #4 10/19/08 4:22pm
I know what you mean totally... my son has Gerneralized-Tonic-Clonic seizures. He is on Keppera now and was on tygertol. He gets them the worst when hes is sick, we just have to have FAITH and pray every day. I know its easier to say and to go through it. Believe me ive did my share of tears and heart break and i now its HARD to see your child go through it. I have a older boy who has Autism and a 18 month old daughter that is so far so good keep my fingers crossed. Hang in there and try to keep strong for yourself and especially your son..
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