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Epilepsy Message Board
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Old 06-06-2002, 12:01 PM   #1
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Join Date: Jun 2002
Location: pittsburgh pa usa
Posts: 2
juligiles HB User
Unhappy 2nd try

I tried to post before but it got lost somewhere..
Our beautiful 17 month old son Sean Padraic was just diagnosed w/ epilepsy. My heart is breaking. He has no clue what is going on, strange ppl poking and proding him and when they finish he reaches out for me and i hold him and he smiles.. and i bite my lip not to let him see the tears.. God bless you all for being here. No one could know what it's like unless they have been there and it looks like we all have been...
I could use a shoulder about now...
Juli

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GOD, grant me the serentiy to accept the things i can not change
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GOD, grant me the serentiy to accept the things i can not change

 
Old 06-06-2002, 01:37 PM   #2
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Join Date: Jul 2001
Location: Canada
Posts: 209
Kaitie HB User
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Hey there.
My heart is with you...and though I am the epileptic in this situation - I kinda know what you feel like. My mom was TERRIFIED, and it seemed like I just wasn't. She tried to be strong for me and I was strong for her too (I was 8).
I live in a small town - and somehow even people I talk to ten years later (like my boyfriend's parents) somehow heard from so and so....and one time J's mom said to me "You know you scared your mom to DEATH!" and I was like 'WHAT?' and yeah, apparently my mom talked to a lot of people because she was terrified and needed a lot of support. Just don't spend this time alone - make sure that you have a lot of friends and family who can share your grief a little - and help ease your pain and frustrations.

I'm only 20 - but I can just guess that there musn't be ANYTHING worse than watching someone take your baby from your arms...to watch them in pain - wanting to help/save them but not knowing how.

Your son will be fine - and he is the one who will share HIS courage with you!

In a couple years you'll kiss him goodnight - and you'll be so proud - because you both made it through this ugly time...

All the best
Kaitie

 
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Old 06-06-2002, 02:41 PM   #3
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Join Date: May 2002
Location: N,Bellmore, NY
Posts: 2
Angiemomma HB User
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Hi there,
I'm new here also...Although my daughter is 15 yrs. old my heart is breaking too. She was just diagnosed 3 mths ago. We're going through -ell trying to find the right meds. She is having an even harder time as to keep this from her friends. I believe she is in denial. She has become even closer to me as she is afraid to be alone. Last wk she had a grand mal in school. She is mortified her friends in school saw this. She is still saying she fainted and no one needs to worry. I hope for the day to come,that she can confide in someone other than family. God bless you and the little guy. You both will do just fine. You're in my prayers.
Angela

 
Old 06-06-2002, 03:39 PM   #4
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Join Date: Apr 2002
Location: Oklahoma City, Oklahoma-USA
Posts: 561
Ksavage HB User
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I am so sorry that you are having to go through this. I know that it does not seem like it now, but things will get better with time. We all tend to come on the boards & complain about alot of things to eachother (thank God we have oneanothere here) but the support we get from everyone here is priceless. Nobody else will listen & offer a better hug better than my friends on the board. Your little Sean is going to be such a wonderful little man! I have not been able to figure this out yet but people with E are the most compasionate people in the world. Maybe that is God's little "trade off" for the fits we have from time to time. You hang in there & please know that my shoulder is allways here for you anytime you need it. & Welcome to the boards! http://www.healthboards.com/ubb/dance.gif We could allways use a new cheery face!
Take care & hug that little sweat boy for us all!
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.
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......and that's all I have to say about that.......

 
Old 06-06-2002, 06:05 PM   #5
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Join Date: May 2002
Location: Ohio
Posts: 92
Beth's Mom HB User
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Kim said it so well...this is a compassionate message board.
Juli...I feel so sorry for you as I know exactly where you are coming from. Our daughter is now 23 yr. old, but when she was 6 mo. old we took her to the Columbus Children's Hospital in Ohio for testing. I slept in the room with her at night in a chair so she wouldn't be alone, though in the days I drove an hour and a half each way to be in my classroom teaching. I was mad at my husband at the time for not facing it with me...was about ready to leave him! He said he did not like hospitals...but we are still together and coping today.
While at the hospital that week, they kept bringing interns from Ohio State in and each time I would have to go through all their questions. When we left the neurologist simply said she had epilepsy. I had to ask him what it meant. He said seizures of an unknown origin. Many years later it was discovered that she had had brain damage at birth.
You did not say if you know why your child has seizures, but my guess is you haven't a clue. So much of seizure activity is unknown. There are even meds that work to contain them that they don't know why they work.
Coming on this message board is the best thing you can do for your little guy. There are caring people on here who will listen to your thoughts without being critical. You will also learn from the experiences of others and hopefully some things that will help your son.
I can tell you that the one thing positive to have come out of our daughter having seizures is our compassion for others and the good that she brings out in the people she meets.
God bless and welcome to a place that understands.
Marilyn, Beth's Mom

 
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