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son's epilepsy is uncontrolled. I could really use some advice.
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survivingsinglemom posted:
My 21 yr old son has epilepsy (partial seizures) and has been on 8 meds since diagnosed 2 years ago. He can have has many as 30 per day to maybe 1 to 0. Surgery is out because it will leave him paralyzed. We need some suggestions or anything to help him. I hate seeing him suffer and he so wants to be able to have a life again.
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hula_dancer73 responded:
you could ask the doc about the VNS or Vagus Nerve Stimulator.

NOTHING to do with the brain at all. Just an implant in teh chest. I can explain that to you later if you would like.

I have one and it cut down on my szs ALOT! My ep was literally killing me and brain surgery was NOT an option for me becuase I have 3 lesions on the left temporal lobe. so removing one would not solve he problem so they did the VNS in stead. I was haivng 9-10 szs a day almost every day, and the VNS has cut it to 3-4 a month. I have Complex Partial szs and Left TLE.

ask your doc and see what he says if surgery in not an option maybe this is.

Nancy (aka hula_dancer)

I live in HI on O'ahu. In the Waikiki area right near down town Honolulu.
 
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dancer86442 responded:
Hello Mom,

Welcome to our Family here in Epland. We have Lots of Resources & Tips for you. Feel free to ask More questions, comment or vent at anytime. I'll be listening.


So, my 1st piece of advice: Have him start keeping a Daily Journal. Chek our Tips for Journal Info as to what Should be included! This is More than just Tracking Seizure Activity.

The VNS, is an option you may want to discuss w/ his Neuro. But, do some 'homework' about Diets & seizure control, too! Phylis' has an article on her site you can read. No need to join to Search &/or read articles on epilepsytalk.com. The link is in Tips &/or Resources. Another good source is coping-with-epilepsy.com. Their Info about neurofeedback is Good & a consideration, also.

As for getting back to a 'normal' life. Do you know if there are any 'live' Epilepsy Support Groups in your area? You can find out by visiting efa.org & Search w/in your State. If not, then ask him to join us here. If he is on Facebook have him Search for Epilepsy Support Groups on that site. There are Lots of them. He will be able to talk w/ others' who understand what he is going thru. He needs to know he Isn't Alone! Support Groups on or off line can be a Great Help to anyone/everyone. W/or w/out Epilepsy. Caretakers I have found need just as Much Support & Info, if not More So! I'm not trying to get rid of you. Just letting you know that the More support & Info he has the Better. I do hope you will continue to visit us here in Epland & keep us Updated. Hugs!

Love Candi
 
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survivingsinglemom replied to dancer86442's response:
Thank you for the support and the additional information. I will look into it. I will also be coming back for help and support. Being a caregiver is hard and I just hate seeing my son suffer and then I have family members who don't want to believe that he has these seizures and have called him a liar. They also don't understand why he can't work. Having up to 37 seizures a day makes it hard to get a job and maintain one. He tried.

Thanks
 
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survivingsinglemom replied to hula_dancer73's response:
Thanks for your response. The physician didn't want to do the VNS but it seems to have worked for you. We will try again. My son has to see the physician again in 3 weeks. We have to drive 3 hrs from here to see someone because there isn't a good physician where I am.


Donna (aka survivingsinglemom)
 
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dancer86442 replied to survivingsinglemom's response:
Hello Donna,

Believe it or not, family can be the worst when it comes to knowledge or Support! The subject has crossed these boards Numerous times. And is discussed just as much on other Groups. It doesn't help that Partials are the least recognized as far as Signs. The symptoms usually don't last long enough for an Un-educated person to Note. Not to mention the majority of the Public Still think Convulsions are the Only Type of seizure.

IF your son's DR continues to treat this w/ medication, please keep in mind, that finding a med that Works takes Time! It took me & my Daughter over 10 yrs to find meds that worked for us. So be Patient & persistent. Never give up Hope!

Here is Hoping you & him find a Solution that Works Soon. Hopefully, w/in the next yr 2013. Happy New Year! Hugs!

Love Candi
 
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hula_dancer73 replied to survivingsinglemom's response:
hi donna,

yoru situation with family members is the same as mine on my dad's side.

they would say "leave her alone she will growo ut of it".

i had really bizzare behaviour as a child and it was not a behaviour issue, it was partial epilepsy undiagnosed. I ran around like that until 2003, when it was finally dx'd.

So I have had it my whole life and no one, not one person or doctor.

So my dad and his family always told me it was not rue I was making it look like something to get attention (said to me my enitre life, until I got married and still does it.)

He calls me swear names, consdiered this as a weakeness in the family, tells me that I am stupid and other things.

However my brother got married in may of last year. My neurologist told me no not to go becuase the str ess of going back to that bunch would inevitably cause a sz maybe more nad further mor e I did NOT want to wreck my brother's day,so I stayed home with my family.

He was giving my aunt a hard time about this and she asked him if he has even/ever seen a sz and he said no, and she tole him about several occasions that were ugly and he said nothing about it and jsut walked away still saying it is all fake and in my head.

so do not feel bad when it comes to family members. They are NOT dumb just uneducated, and some are jsut plain stubborn and ignorant about it.

My mom knew something was wrong but NOT put her finger on it so it never c ame up with the docs, I would jerk when she would wake me up from a nap or in the morning after bed as a baby and scream bloody murder after put down to bed as a toddler.

Later I would have incedents where I wuld wet the bed and be all sweaty when I woke up. I continued to wet the bed until I was between 15 and 16. Then it stopped completely.

I had a child die from epilepsy to a rare from of JME or juvenile epilepy and another one still at home with Grand Mal szs. anmd I have TLE.

Nancy


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