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Discussion Starter · #1 ·
Some of you may remember me telling about this at one point but for those of you who don't know the story, here it is.

About 10 years my middle child was diagnosed with epilepsy. He was 13 at the time. For 1 year the neurologist that we had tried to get his seizures under control but couldn't. We were sent to a specialist epilepsy center with clinics throughout Holland. There he was taken into the clinic for intensive treatment which was heartbreaking for him and all of us but which resulted in him becoming seizure free just after his 15th birthday (which he celebrated in the clinic).
He would have to use medication but his drs were convinced that there was a possibility that he could maybe grow out of it.

Fast forward to 3 years ago. His EEG's were getting better and his drs were convinced that they could start to reduce his meds.

He has been medicine free for almost 1 1/2 years now and everything has been going well.

Some of you have been following this son's journey with his brother in renovating his apartment.

Last Wednesday he came home from working in the apartment, ashen faced. He didn't feel well and had been having minor 'shocks' all day. He stayed in bed Thursday and Friday and came out on Sat. Still feeling shaky but shock-free. He thought that the rest had done him good.
Saturday went as normal as did Sunday morning. He played field hockey with his brothers in the afternoon and had a great game (they won.)

This morning he didn't get up for work (he works part time and studies part time) and I went into wake him.
After I woke him up he came with the news that he was going to have call his drs. since the shocks are becoming more serious and he is afraid that it's back.

He will be calling in a couple of minutes to make an appointment.
 

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Better to get it under control now.

My sister just lost her 31 yr old son about a month ago. He was in med school taking courses. Had had a few seizures but did not have money / insurance to go to the doctor. She came home from working the night shift to find him dead on her porch. He lived with her. She is a nurse btw and so is her daughter. It was all quite a shock to the entire family. No prior history of seizures.
 

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Discussion Starter · #3 ·
Better to get it under control now.

My sister just lost her 31 yr old son about a month ago. He was in med school taking courses. Had had a few seizures but did not have money / insurance to go to the doctor. She came home from working the night shift to find him dead on her porch. He lived with her. She is a nurse btw and so is her daughter. It was all quite a shock to the entire family. No prior history of seizures.
I am so sorry about your nephew. How horrible for everyone.
((((HUGS)))))
 

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thanks for sharing this with us so that I may pray for him and your family. Of course, we will look forward to an update.....
((hugs))
 

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Dutchie, I will be praying for you and your son. God Bless you all! Please keep us updated. Hugs to you.
 
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Discussion Starter · #9 ·
They weren't in the office today.
We have to wait till tomorrow morning.

Just hope we don't have to wait too long for an appointment
 

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Nothing worries and stresses us more than our children having a problem or crisis.

I hope it all works out well. I will be thinking good thoughts for your son, and worrying with you so you won't be alone in this.

Keep us posted.
 
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How scary for all of you Dutchie!! Once you get some answers and a plan of attack, it won't feel so overwhelming. It's just the right now of not knowing and what if and all those thoughts that intrude on our mind. For me, prayer works well - and I am sending prayers, hugs and aloha across the miles to your son and your family. Please take care and keep us updated.
 
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Discussion Starter · #15 ·
Can you just go to the hosp. and get an EKG? I lost my BF in H.S. to epilepsy. Tell them you think he is having mini seizures and has a history. Prayers.
(((HUGS)))

They won't do anything unless he is having a major seizure and doesn't have meds for it especially since he is known at the SEIN (translated - Epilepsy Foundation Netherlands).

This is the only drawback to being connected to this clinic. They take over the care but they are only here in our city twice a week. If we had an emergency we could call the main clinic but the mini seizures that he is having aren't reason enough to call according to my son.

The main clinic itself is near Amsterdam - that's where they do the extensive EEG's that take about 2 or 3 hours.

I feel so very sorry for my son. He doesn't deserve this. But be sure I am watching over him and I am VERY vigilant.
 

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Discussion Starter · #16 ·
How scary for all of you Dutchie!! Once you get some answers and a plan of attack, it won't feel so overwhelming. It's just the right now of not knowing and what if and all those thoughts that intrude on our mind. For me, prayer works well - and I am sending prayers, hugs and aloha across the miles to your son and your family. Please take care and keep us updated.
You hit the nail on the head - it is the not knowing what's going on that gets to me. Especially now that we have to wait till tomorrow to call. If it were up to me I would have dragged him to the clinic near Amsterdam but it's difficult to drag an almost 24 year old.
 

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I hope all goes well.
 
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(((HUGS))), Love, and prayers being sent your way. I know when my son has to go to the hospital with his diabetes, it is very scary. I cannot imagine something more. You and your son are definately in my thoughts.
 
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Discussion Starter · #20 ·
update

Thanks everyone for your kindness.

My son called the drs this morning. He spoke to the secretary.

The have an extremely busy schedule today but one of the drs will be calling my son between 1.30 and 2 pm this afternoon for a telephone consult.

I feel like I'm in limbo. I HATE waiting.

Will post as soon as I know something.
 
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