son was just diagnosed with epilepsy

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newtothis

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hi all, new here, I'm Don. My 14 yr old son was just diagnosed with epilepsy, he has been getting complex partial seizures, best guess is for around 2 years or so, why he waited so long to tell me something was wrong is beyond me, I would assume he didn't know what was going on with him, anyway, he has been prescribed keppra, after doing some research on this, I'm a little worried, any advice on what to look for as far as side effects, and what to do if we notice anything, I guess I'm more concerned about the keppra rage I've been reading about, he is also taking 100mg's of b-6 every morning with his 3 keppra pills, any advice/suggestions would be greatly appreciated!! Thanks :)
 
Hi Don,
Welcome to CWE.

Sorry to hear about your son's diagnosis, I hope the Keppra stops his seizures. Just because some people have Kepprage does not mean your son will get it, just monitor his behavior for an increase in violent outbursts and stuff.

If the Keppra causes behavior issues or fails to stop the seizures there are many other medications to try.

Most people do well with Keppra and the odds are so will your son.
 
I wanted to add, not related to the Keppra but just the diagnosis itself, keep an eye out for signs of depression which is very common after diagnosis especially during adolescence.
 
thanks for the reply, and I'll keep an eye on it, I do feel sorry for him, we just completed a snowmobile restoration together, I could just see the disappointment in his eyes when he was informed that, at least for now, he wont be able to drive it at all, on a positive note, he hasn't had a seizure since beginning taking the keppra, although, it's only been four days now, and he starts the full dose (3 pills twice a day) until today
 
! ! ! ! WELCOME TO CWE newtothis ! ! ! !

newtothis,
You have made a good choice to join CWE! The members will try to help you any way that they can.
I have lived for 50+ years with E and it can cause a person to have many hard times. The way I look at E is that there are two things that a person who has been diagnosed w/E has to have. Patience is the first and most important one. Neither you or your son can expect any kind of 'total healing' in a short time because each and every case of E is different and as a result each person can expect to have different experiences with their E. The other thing that a new person w/E has to have is the acceptance that 'TIME' is not going to be in their favor. This is because the neurologist or epileptologist can't just choose a AED and be assured it will work for that person. Many times it can feel as though the person w/E is a lab rat because different aeds have to be tried to see if they may work better than the last aed that was tried.
Don't let yourself or your son to get too happy with the way things are going in his treatment(Keep a level head!). This can only lead to feelings of disappointment and depression when a 'breakthrough' seizure occurs( and they can happen at any time).
Another thing that I have found to be helpful is to 'accept a a fact' that E is a part of my life that I can't make disappear! Acceptance is something that allows the person w/E to be able to deal with the obstacles that they may face and defeat these obstacles.
Don't allow either of you to 'give up' because that only leads to feelings of negativity and that is definitely NOT needed by a person w/E because of the stress that it may bring into the situation!
After the decades that I have had E I have grown to feel that I have been made into a much 'stronger' person because I have E. Many people I know who are 'normal' couldn't deal with many of the obstacles that I have dealt with and defeated so I could lead a good life.
If the person w/E lets themselves feel 'lost' they need to realize that the best thing that they can do is to talk with someone and be willing to ask any questions they may have about their E. I know that I feel much better about a person if they ask me about my E than I could ever feel towards a person who came up to me and said 'I'm so sorry that you have E.' These examples show me that the person who asked me a question(s) feels that I am am able to answer questions for them and not just someone to feel sorry for!
You will find that there are many members of CWE who have years of experience w/E and they want to help any new person learn by using the experiences they have had to help the 'newbie' :clap:

acshuman
 
Hello. I have both simple and complex partial seizures. Recording when your son has seizures & what happens during them will help both you and his neurologist. I record the both date and time of all of my seizures in a notebook.
My complex partials are especially troublesome because unless I have a witness, or do something to myself/my surroundings I don't know even know that one occurred.
I'm on Topamax and Vimpat, 400mg/day of each, along with 1mg folic acid. Even then, I get breakthrough seizures.
 
Hi newtothis, welcome to CWE!

Keppra is often one of the first meds tried for epilepsy because you can get up to a working dose very quickly. It can also have a relatively short half-life, so it's important that your son not miss a dose. The B6 should help with any mood-related side effects, though you should still keep an eye out for them or any other side effects. Fingers-crossed that the Keppra works well for your son -- as it does for many, many people. If it doesn't, there are a lot of other meds out there to try.

You can also help your son by encouraging him to be proactive about his overall health and lifestyle -- eating properly, getting plenty of good quality sleep, minimizing stress. Good general info can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
Hi Newtothis,

Just like your son I have complex partial and absence seizures. I tried keppra and it gave me a hot temper and the drug also increased my seizures.
I've had epilepsy for 44 yrs. I started having seizures when I was 10 yrs. old.
I've seen many different neuros over the yrs. but I got the best help seeing an Epileptologist since they specialize in epilepsy. If you take your son to see an Epileptologist you may want to ask for a DNA test to be done all the do is draw some blood and wipe the inside of a persons mouth with a q-tip to get some salvia, all of that is sent to the lab and they will be able to see the amount of enzymes in your sons liver along with looking at his body chemistry and they will be able to match all of that up to the best seizure med for him with the least side effect, they will also be able to tell if your son is drug resistant meaning no seizure meds will work for him. I am drug resistant so I found being on the ketogenic diet a great help for me along with taking vitamin B12 once a day and now my Dr. has me on the medical marijuana which has done wonders reducing my seizures. Try and keep track of your sons seizures he's at an age now where his hormones are changing a lot since he is growing up and sometime that can trigger seizures for some people. Ask your son if he gets a warning he's going to have a seizure like seeing colors in his eyes, getting a nervous feeling in his stomach or smell odd odors if he does tell him to tighten up all the muscles in his body and make his hands into tight fists if he does this it will often stop the seizure I learned about this from my neuro back in the 1970's. If you keep track on a calendar of all your sons seizures and write down what time they happened and the type of seizure he had this will help his Dr. and he may be able to see a pattern in your sons seizures. I always have seizures the 3rd week of each month, also tell your son to stay away from anything with NutraSweet in it it has been proven nutra sweet causes more electrical activity in the brain and can sometimes trigger seizures for people. Also if your son uses a cell phone a lot and then he has a seizure he could be cell phone sensitive meaning the frequency that cell phone is using is triggering seizures. I found out I have this problem after a e.e.g. was done on me and the Drs. purposely turned on their cell phones and I didn't know, each time they turned their phones on the spikes went high in the e.e.g. almost putting me into a seizure. I wish you and your son only the best and May God Bless You and Your Family.

Sue
 
One of my family member is just been diagnosed with epilepsy. Have you seen any side effects of using Keppra during the process?
 
My neurologist had me try Keppra, but I was unable to use it. It gave me such terrible stomach cramps that I was doubled over in pain.
 
Everyone Reacts Differently

ferrychristian,
The reactions or side effects than a person may experience can be different in each case because each person's body is different. This can be seen by looking at a person's DNA. The slightest difference in any function of the body can result in these differences not being the same so every case has to be looked at individually.

acshuman
 
I also had the worry with keppra as I have temper rage problems best of times one reasons I held off and don't take it I take different Meds.Can only say what I read of people they seem get on with it no problems but I do understand your concerns.Being parent not easy taking responsibility for another's life ,I sure doctors must been happy start him on keppra or they would not done it
 
Someday they'll know who is likely to respond best to keppra but we aren't there yet. They can see how a person's enzymes function and know how some drugs might work or not work. For various drugs kidney and liver problems can indicate a reason to use a different drug. They are making some dents in genetic info but there's a long long way to go.

With our daughter (8yo at the time) keppra really reduced her simple partials, not sure about the complex partials as those were infrequent anyway. It made her irritable and more negative but not raging. Unfortunately she also began talking about wanting to die which stopped after getting off of it (was on it for just under two months). It was the third drug she tried.

Really loved trileptal but it only stopped most of the seizures at the time, lamotrigine could cause toxic side effects if her immediate release dose was too high and just reduced a few of the remaining simple partials. Every drug is really a ' your mileage may vary' e.g. our child could handle doses of trileptal I know some adults could not. But the partials have mostly faded away without finding a dose that did the trick. Some generalized seizures appeared a few years after diagnosis and those are controlled with lamotrigine.

So tradeoffs abound, as lamotrigine can be a problem for our child but we deal with it. Keppra does not interact poorly with most other drugs and some people do splendidly on it so it is well worth trying. Hope it does the trick for your son with minimal problems.
 
ferrychristian,
so far it hasn't been to bad, he's just been really tired lately, I'm hopeful that after being at the full dose for a few weeks this will reside as well, but so far, he's pretty much his same goofy self :)
 
Thanks for all the responses everyone, it's greatly appreciated, so far he hasn't had a seizure at all since beginning the keppra, and no real noticeable side effects, well, at least not yet, how long does it take before you really know though?
 
how long does it take before you really know though?
Click to expand...
It varies from person to person, but a good general measure is after one month at a stable dose.
 
Newtothis - I'm sorry about your son's diagnosis, but he'll still be able to live a full and active life, just with a little more consideration than others. Finding the right medication can take a little trial and error, but some people get it on the first try! Try not to stress or let your son stress about new meds or changes, as that stress can have an effect in and of itself. Quite a few meds have tiredness as a side effect (actually, epilepsy has tiredness as a side effect!). Just take each day at a time, don't panic, focus on your son eating well, and don't over crowd or make him too anxious. Be careful but not possessive and domineering. You sound like a great parent for seeking out answers. I echo all of the advice above. I'm fairly new here, but I know this is a great place to seek advice. I've had epilepsy all my life (35 years and counting!), and I come here for ongoing advice, too!
 
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