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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Livernut

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Hi just joined. I'm the father of a 21 year old son who has epilepsy. I suppose I've joined to hear how other parent's on here cope. And how people with epilepsy cope. [emoji111] [emoji111]

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Hi livernut, welcome to CWE. You've come to the right place, lots of great folks here, including parents. :)
 
CathyAnn31 said:
Hi livernut, welcome to CWE. You've come to the right place, lots of great folks here, including parents. :)
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Thanks CathyAnn31 I'm hoping to get my son to sign up aswell as I feel he could relate how he feels with different aspects of his E.

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Welcome to a great group! I recently joined on here because my 16 year old son was diagnosed with epilepsy last month. Everyone here is very friendly and understanding.

Along with epilepsy, my son has Sensory Processing Disorder. Among other things he is oral and tactile defensive so it adds an interesting twist to doctor appointments and getting him to take medication.

I think we got the medication issue under control for now. We will see how it goes when I have to increase his dose in a few days. He takes Depakote Sprinkles mixed in with a minimal amount of pudding, but it is a long drawn out process.

He "manages" to tolerate the close proximity and touches of medical staff without a complete emotional meltdown, but he is super tense and sometimes ends up in tears afterward (when he is alone with me). His Occupational, Behavioral, and Physical therapists are working with me to develop calming techniques to get him through appointments easier. Deep breathing exercises don't work for him.

It's an uphill battle none of us signed up for, but we keep marching forward.
 
I'm glad you joined, this web site is great! I'm 40 and I've had epilepsy for 13 years. I'm learning, and still learning, so much about it because of CWE.

It would be great if you could get your son to join too. He might think he's the only one having some sort of problem epilepsy related but when he asks about it here he finds out there are so many other people that are dealing with the same issue and what they do to try to help with it.
 
! ! ! ! ! Welcome To CWE Livernut ! ! ! ! !

Livernut,
You will find the members of CWE to be understanding, helpful and very knowledgeable about E. We will try to answer any questions you or your son may have, because that is what we want to do! Both of you are very welcome to ask away with any questions you may have about E and the way to live with it! :clap:
I know that young people sometimes have a hard time opening up to others about having E themselves. I can tell your son that he has nothing to worry about because many(not all) of us have had E when we were young and dealt with those same feelings. :cheers:

Welcome Livernut,
acshuman
 
Thanks all for the welcome messages. We've have actually been dealing with E for 16 years now. My son is 21 now and had his first seizure at age 5. He's been through all the Meds and side effects that come with them. He's had surgery 4 times and has just had a vns stimulator fitted. I guess I'm just hoping to find some like minded people who really understand what E brings to our lives and for my son to be able to talk to people who really know how he feels. Again thanks everyone for the welcome.

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Hi Livernut,

Welcome to CWE! I can relate to your son I've had surgery twice and tried over 10 different seizure meds but my Epileptologist found out I was drug resistant to all seizure meds out on the market after doing a DNA test on me.
When I was your sons age I just wanted to be treated like your everyday normal person without having my family worry about me so much.
Tell your son if the seizure meds aren't working the try CBD (medical marijuana) my Dr. put me on last April or May and my seizures were reduce greatly. I wish you and your family only the best and May God Bless All of You!

Sue
 
Thank you Porkette, I think cbd is our next step. Here in ireland it is in the process of being legalised for medical use. So fingers crossed we can try it and hope it works. All the best for the future. Livernut.

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Livernut

You are very welcome to CWE, there are fantastic people here who will try and help you. Some are parents and the rest of us live with E, a good mixture. I live in Ireland as well, CBD looks like it might be legalised, I hope.
 
Thanks Fedup, yeh it looks like it. We were in Beaumont today at the vns clinic. And told them we better be at the top of the list for it.

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Livernut

The thing is they might pass it but when will you actually be able to get it, you are lucky I am in Tallagh, you need a degree just to get past the door. 18 months since last appointment and I was on the emergency list.
 
Yeh everything is so slow. But when it comes available my son wants it straight away.

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I have a VNS and it's helped me a lot. I am still having seizures and taking meds but not nearly as many of either.

As long as I can feel the seizure coming on, which I don't always, I can usually stop it from going into a simple partial or worse. If someone uses it on me while I'm having a seizure it brings me out of it pretty quick. It took a little while to figure out what meds to take with it and find out the settings before we found out what works best. My neuro is still changing things from time to time, mostly trying to get me off some of the meds so I'll just have to use the VNS. I don't know if that will ever happen though.

I hope your son has good results with it.
 
We're only in the very early stages of the vns Valeriedl so we've no real results yet. But it's like any change in treatment your just hoping for the best.

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Livernut

Just make sure you insist on asking all the question needed, I find some neurologist have tried to force the vns or surgery on you.
 
Vns was first mentioned to us when Adam was only young. We had a visit from a girl who lives quite near us who has it and it changed her life. We've learned over the years to not get too excited about any new treatments as we've had some many fail. But you just have to keep going.

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Livernut

It is good news the VNS works for that girl, its good you get to talk to somebody else as well.
 
Hey Livernut, just wanted to add my welcome to the others. You've gotten some good support and advice already! I hope you feel free to explore the forums here and add your voice to our ongoing conversations.

Best,
Nakamova
 
Thank you Nakamova, I will be exploring more from Monday as I work weekends. So far so good.

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