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Godson with seizures

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Posted 5/25/2005 12:01 PM (GMT 0)
I have been trying to help my best friend with her son's seizures, she has several children and anxiety probs and it's difficult for her to deal with issues this big.

Her son was diagnosed with epileptic seizures, tho he doesn't have epilepsy. He has some type of cysts in his frontal lobe due to chromosomal defect. His mother doesn't remember the actual name they called it and I couldn't find any info on it.

They are telling her that the seizures will be fatal to him if they cannot get them under control. They started eight months ago with occasional petit mals, then last month they progressed to grand mals while on seizure meds. The first one lasted 15 minutes and an ambulance to him to ER, where they promptly just sent him back home. Later that day he had a grand mal that lasted 45 minutes, his parents decided to not call the ambulance again. I saw the child (he's eight by the way) two hours after the last grand mal and he was extremely altered, large delay in responding to you, couldn't walk, didn't look "there" at all. He still has the petit mals, but hasn't had another grand mal.

His doc has him on one med, can't remember the name at all right now, but he still has seizures while on this. If the seizures are that dangerous to him, shouldn't he be tried on different meds to stop them?

My uncle was diagnosed with epilepsy as a child and it now in his sixties without any large issues. He takes meds, but drives even though he shouldn't. I've never heard him or my family speak of his seizures being dangerous to him. So I'm wondering what makes seizures dangerous, vs. non dangerous and has anyone ever heard of my godsons condition?

thanks for listening

Posted 5/25/2005 2:20 PM (GMT 0)
Sounds like a really difficult case. SO sorry to hear about your friend's son. MOST who have epilepsy, it is not fatal. His very long grand mal (usually called Tonic clonic now), ARE dangerous, however. It can take even up to a few days to fully recover from long ones.

I wonder if the doctor was emphasizing the need to keep him on his meds.


Sometimes they call it seizure disorder and not epilepsy, means the same thing. Hoping that your friend can feel your support. She is more than welcome to come here as well.


Epilepsy.com is a great place for good solid info for people new to this.....
Posted 5/26/2005 2:08 AM (GMT 0)
Hi

There are so many unknowns and so many questions, it sounds like his mom needs to have a good heart to heart talk with his doctor to get some answers.  Maybe you should go to the doctor with her to the appointment.  That way, it will be easier to retain information and ask questions. 

Seizures like you describe are serious and the more you know, the better.  But the only way to get the facts is to get it from the doctor.  That way, you can do the research about his condition when you know what it is.  If she doesn't remember the name- have the doctor write it down.  ALWAYS keep a list of all meds at all times.

Seizures can be deadly.  My neuro told me he has lost three patients due to seizures, but none due to epilepsy surgery.  So, it is imperative that his mom makes sure he takes his meds and goes to all his appointments and the doctor does everything possible to get the seizures under control.   The best treatment should be discussed with his doctor-whatever that might be. 

Epilepsy is a difficult and misunderstood disease.  It's exhausting for his mom as well as for him.  The frustration frays the nerves and weakens the spirit.  YOU are so great to be there to want to help and give support.  Take comfort in the fact that there are others with epilepsy (and many without) that support you, your friend and her son.  You all are not alone.  ((((HUGS)))) to you.      Glenda  :-)   

  

Posted 5/26/2005 3:02 AM (GMT 0)
Thanks, everyone. This is so frustrating for me being so close to him/his mom/ their family. She isn't handling her son's disorder well, she has cancelled appt.s that he desperately needs, stopped medications because they were too expensive, etc... One minute she is totally focused on him and the next she seems like she wishes he was somewhere else. I tried to get her to go to a therapist/psychologist and talk to them b/c I know it has to be tearing her up but she won't go.
She's upset now b/c she was told that he would never leave home, always be dependant upon her, if he lived to adult age.
He's only on one med, still don't know the name... and has some suppositories she is supposed to use to stop another grand mal. That's pretty much his treatment plan.
He has two brothers and a sister, and since this is a genetic disorder and all four kids are biological from her and her husband they all have to be tested for it. I have my fingers crossed.
Thanks again, everyone
Posted 5/26/2005 9:24 PM (GMT 0)
Diastat might be that suppository she has. Look it up on Diastat.com, you can even ask them for a free case and video to learn about it!


I am sorry to hear she is not treating him right with keeping him on meds and seeing hte doctor. She needs to do that! SO many times there can be control gained through meds. Up to 70% of cases can see control. She needs support herself and that might help her see she is not alone.

Hope you can get her to listen!
Posted 6/3/2005 1:27 PM (GMT 0)
Thanks!! He had a second MRI done, while sedated, and she got the results yesterday and called me. His doc hoped he had moved during the first one, but he hadn't, so what showed up on the first one was still there on the second. Something called dual cortex syndrome. I couldn't find any info on the web about this and I'm sure that there is a more scientific name for it that I need to be using, will get that from her soon. Unfortunately, there is no cure, no fix, no nothing. Apparently, he's a rarity with it, it normally affects girls. It is passed through the mother. So all her kids need testing, one is female, and her sister has two girls.
From the info the doc gave his mother, no one with this has ever lived past 19 yrs old. I'm trying to get her to go to a doc and get some medication to help her get through this. She needed help before this showed up, and now I'm very concerned about her.
I have hope for the boy though, if he's rare to have it as a boy... maybe he will beat the odds again and have a longer life!!!!
Posted 6/3/2005 4:28 PM (GMT 0)

Hi

Life is precious, no matter how long.  So sorry about your friend's son.  Sounds like this will be trying times for her.  The coming days won't be easy, but she has a good friend in you to care so much.  I hope you are able to find the comfort you need  to get through this too.  Solice can best be found in the comfort of good friends and family.  I'm sure your support means a lot to her.  She needs to take care of herself. Perhaps she might be afraid to seek a psychologist for fear that she'll have to confront the problem head on?  You might have to nudge her in that direction. 

Don't forget to take care of your stress too.  It's got to be hard on you too.   Let us know how things are,  take care of yourself...  Glenda :-)

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