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Posted 11/12/2008 10:52 AM (GMT 0)
I have only just found this website and wished that I found it long ago. My 15 year old son had his first grand mal sz 4 years ago. He went for all the tests EEG, MRI etc and nothing showed up as being abnormal. Over the next three months he had four more before the doctors started him on medication. He started on Epilem 400mg twice a day for a few months and it was then reduced to 300mg twice a day. Once he started on his meds, he did not have any more sz. In July 2007 his doctor decided that maybe it was time to see if he could go med free. Very slowly over the next 12 months she weaned him off with no problems and four months ago he stopped all meds.

Yesterday within a forty minute period he had two grand mal sz. While at the hospital they ran a series of blood and urine tests and it was discovered that he was slightly dehydrated and his salt levels were extremely high. His doctor has put him back on his medication but I am not 100% sure whether it is the right thing to do or if we are being a little bit too hasty given his salt levels and dehydration.  My son's anxiety levels are very high at the moment (which is totally understandable) and feels that he because he didnt have sz before when on meds that he wont now. My husband and I want whats best for him. What do others think? Please any advice/comments.

Posted 11/21/2008 12:38 PM (GMT 0)
Hi there,

I guess the logical way to look at it is that when he was on meds he didnt have seziures and when he was off meds he had seizures. It is possible that his salt levels were the cause of the seizure but for the health professionals, the SAFEST way to treat your son is to start the AED's again, even if it is only temporary. As his mother, I would be interested in knowing how his salt levels got so high in the first place. Perhaps in a few months, you can persuade the doctor to try weaning him off meds again as long as his salt is fine. How old is your son?

Darren
Posted 11/21/2008 6:54 PM (GMT 0)

Hi J's Mum,

After 29 years of experience with epilepsy, I can tell you this:
Sometimes a seizure can start very deep within the brain and will not show up on an EEG.
In many cases several tests will be required to get a reading ie: Blood test, CAT scan, MRI, PET scan, etc. and could still be inconclusive.

In a lot of cases you could have a series of seizures in a short period of time and then no more for several years. It's almost like saying that it goes in to remission. Epilepsy doesn't go away but it is treatable.

Then something will trigger another one, like fireworks, sounds, smells, STRESS or a combonation of them all.

My advice; If he's planning on getting a drivers licence and sinse the meds seemed to work ~ STAY ON THE MEDS as an insurance policy. Better safe than sorry.

Randy

Posted 11/23/2008 1:53 AM (GMT 0)

Hi Darren, Thank you for your response. My son is 15. The doctors aren't sure as to why his salt levels were high. They have just blood and urine tested him again and we are waiting for the results. Doctors indicated that those 'power drinks' can increase salt levels but my son assures us that he hasn't had one for quite a few weeks, so I am totally at a loss.

Posted 11/23/2008 2:03 AM (GMT 0)
Hi Randy, Thank you for that. J will be able to get his learners permit in less an a year and I must admit my biggest fear is when he starts driving. I agree with you in regards to all the tests, he has had so many and nothing shows. May I ask how old you were when you had your first seizure? 
Posted 11/23/2008 2:04 PM (GMT 0)
I think Randy is spot on with the advice RE: driving. Better safe than sorry.

RE: Salt levels, have the doctors checked Liver / Kidney function? It might not be a problem with the salt intake, but a problem with salt metabolism. (Of course it could just be as simple as his salt intake... have you asked him about his diet recently?)

Darren
Posted 11/23/2008 8:29 PM (GMT 0)

J's Mum;

To answer your question, I was 21 (1979) when I had my first seizure. Didn't lose my drivers licence though. Next seizure wasn't 'til 2002. Lost my DL then. Now I constantly have petit mal seizures weekly. Doctors tell me that if I wasn't on meds, that would be a major grand mal seizure.

That prooves to me that the meds are working.

Question:  Would you rather control your seizures with meds and put up with some side effects or take no meds and feel O-Kay but RISK a seizure and possible serious injury.

Randy

Posted 11/23/2008 9:20 PM (GMT 0)

Hi J's Mum, If your son has had grand mal seizures in the past he most likely will have them again.  My son had his first seizure at 19.  Nothing was done.  In 2 months he had another grand mal and was put on dilantin.  He was good for about 12 yrs although had a few seizures due to having a fever which metabolizes the meds faster and then they are not protecting you.  3 yrs ago my son's seizures went out of control.  He was put on Zonegran and even at the hightest dose 700 mg he was having many grand mal seizures and absence seizures.  He unfortunaltely had a seizure while driving.  Luckily he was not hurt and no one else was involved.  I found a new neurologist who did an EEG and found he was having multiple seizures during the EEG.  He was immediately put on 3 meds - Kept on Zonegran, put on Keppra and Lamictal.  He had to take a 3 month leave of absence from work to get used to the meds as they made him very tired and irritable.  The meds have worked unbelievably well. He has not had a seizure since and all EEGs have been clean.  During one early EEG at the beginning of all this he had a seizure during the EEG and they found that the seizures originate in his right front brain.  Can't be operated on so his choice is to take all these meds for ever and see if he can lead a seizure free life.  He had to stop driving for a whole year and that was hard but he is driving again and working.  If you need more info than you get from your neurologist you should contact the Epilepsy Foundation.  Just go on the internet and type in those words and you will find all kinds of info.  I don't know where you live but my state has all kinds of epilepsy groups for help. If your son is going to drive then he is going to need to stay on meds.  Our state does not have laws about taking away a license. It is up to the neurologist to decide how long you have to stop driving after a seizure.  Most will say 1 yr., some 6 mos. It depends.  But do go on the internet and you will find tons of info that should help you.  I wish both of you the best in working this out.  Please keep postng so we know how your son is doing.

Aurora

Posted 11/25/2008 7:19 AM (GMT 0)
I am not sure about kidney function but I know one of the blood tests he recently had included liver function. Still waiting for the results. It is certainly something that I will be asking the doctor. Thank you. Diet is reasonably healthy and I dont cook with salt. 
Posted 11/25/2008 7:49 AM (GMT 0)
Randy, No we agree, it is not worth taking the risk.

Because you were a young adult at the time of your first seizure can I discuss another concern with you and anyone else who would care to help.

How, as his mum, can I help him adjust and accept that epilepsy and taking meds is going to be a part of his life. I certainly don't want him to feel that he can't live a normal and productive life, but I DO want him to be aware that there are some things that he needs to be sensible about. I don't want J to feel that I am 'smothering' him or being overly protective.

Posted 11/25/2008 8:04 AM (GMT 0)

Hi Aurora,

I'm glad your son's life got back on track. You have both been through a lot from the sounds of it. Your response made me realise that even if things get bad, that they certainly don't have to stay that way and I thank you for that. I hope things continue to improve for your son. Kids, doesn't matter how old they are, we never stop worrying do we?

Posted 11/25/2008 4:55 PM (GMT 0)

J's Mum

Please send me an e-mail with your e-mail addy and I can send you a personal message on some ideas that I have that may help answer some of your questions and/or concerns to help your son addapt.

It's really not that bad.

My e-mail is  [email protected]

Randy

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