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kholton99

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My name is Karen, my son had meningitis a year ago, my husband and I left to go to work and he usually gets up and leaves for work or school but apparently he was sick and started having seizures, so he layed on the floor all day and had asperated, my husband found him at 5pm unresponsive, when he arrived at the ER he had a status seizure, it was over 20 minutes, they put him in a coma, and after 4 days told us that he was brain dead and would never wake up. Well thank God he did that very same afternoon, and he gradually began coming around, they took him off life support, he had a small seizure after an EEG but has been on 2000mg Keppra XR since then and has not had one at all, I have noticed at night when he is sleeping he jerks which he never did before, my son by the way is 20 years old and the Keppra has changed him, he is moody and has a terrible temper which he never had before, I think some of it is aggrivation of not being able to do the things he had planned on before he was sick. Since it had been a year he wanted to taper off of his med all together, so the doctor did an EEG and now says he has frontal epilepsy, I am devastated, I know it could be far worse and I am so grateful to still have him, I have just watched him struggle so much and I just hate it for him. Now the doctor wants to switch him to Lamictal because he said it would make him feel better, apparently younger males have a harder time with Keppra because they have so much testosterone which causes the rage, Lamictal sounds better but I am terrified about the rash, I am also scared that Robert will have more seizures, I know a lot of you have a lot worse.... I have been reading the forum since last year, its just so scary, he is driving to work and school, there just seems like so many things could happen, I'm sorry I am freaked out right now, I just have horrible thoughts about him being in that coma and I am afraid if he has a seizure it will go back to that. I hope someone can advise me on the Lamictal, he seems to be coping better with the Keppra since he's been on it a year but you never know when the mood is coming, the doctor said he would have a better quality of life, maybe someone could guide me on this?
Thanks so much in advance!!
 
Hi Karen, welcome!

I'm sorry for all you and your family have gone through. I understand how terrified you must have been and how scary and uncertain things still feel. Good for you for coming here for info and support. It can be scary to contemplate a med change when you have seizure control -- whether you're the person having the seizures, or a friend or family member. But if your son is unhappy on the Keppra, then it may be worth trying the Lamictal. (BTW, many here have found that taking a B Complex vitamin with B6 in it has helped the moodiness that Keppra causes -- if your son hasn't tried this already it might be worth asking the doc about).

The best way to avoid an allergic reaction on Lamictal is to go "low and slow" -- that is, to ramp up onto in small increments over a long period of time. If your son decides to make the switch, then most likely it will take place over a few months, with the Keppra tapered down once the Lamictal reaches a working dose. When I went on Lamictal it took 3 months for me to get up a dose of 250mg (while tapering off Zonegran at the same time). I had no allergic reaction, no rash. And no seizures. In the first few months my sleep was affected (very restless, vivid dreams), but that side effect has since gone away.

Ultimately, your son will need to make the call about switching the med. He may be on meds for a good long time, so it can be worth trying to find the med that gives the best quality of life.

Best,
Nakamova
 
Hey there and welcome!

I'm new too and these people have been great! learned some things and its great to compare and contrast with other people who know it first hand.
For those side affects your discribing is th exact reason I dont take keppra. I've found that alot of people these days are on Lamictal fro siezure control, thats what I'm on. I dont think you've much t really worry about in regards t th rash, thats a pretty rare occurance from what I understand. You son might be mad about things he cant do anymore, but I'm willing to bet it prob more th effect of th med. Dont quote m on that though, talk t your doc.
I recomend you dont freak out either, your son might feed off that and you dont wanna discover that is a trigger of his. I am absolutely thankful that he ok and didnt expire.
Like I said these people are really nice and helpful. Glad t have too! :)
 
Hi, Karen,

Welcome to CWE!

I am so sorry to hear about your son's illness and now, his seizures. He has had an amazing recovery, though, and I can tell he's a fighter and he's going to be okay.

I'm on Lamictal. I've also been on Keppra. Everyone feels different on each drug, so it's hard to say how your son will do on Lamictal. Myself, I did horribly on Keppra, and am doing well on Lamictal. Your son may or may not get a rash. Most people don't if they increase their dose very slowly. Even if he does get a rash it probably won't be Stevens Johson Syndrome. Only .05% of people who take Lamictal get SJS. That means out of 10,000 people who take the drug, only 5 will get the rash. This reference is slightly out of date. Lamictal has now been approved for pediatric use. (Book Reference)


Here's my experience with a Lamictal drug reaction rash: I had a rough time on Lamictal when I was ramping up on it. I did get a drug reaction rash. But it wasn't Stevens Johnson Syndrome (SJS), thank goodness. A dermatologist teamed up with my Neuro in managing the rash. I had steroids to rub on my skin, and ultimately the neuro took me off the Lamictal.

Long story, but we decided to try the Lamictal again. This time we ramped up at 1/4 the speed we did last time, which is 1/4 the recommended rate in the package insert. I still got the rash again. Out came the steroids to rub on my skin and this time to also take by mouth, and the dermatologist decided we could "treat me through it" because she thought it woudl go away. The rash was much milder than last time. The two docs watched me like a hawk until it was gone. Now I'm on Lamictal, no problems.

You may want to talk to Gr33nr0se, too. She just had a drug reaction rash. It wasn't SJS, either, and in the end she is okay.

I wouldn't let fear of the rash stop you from trying the med. I would check your son out thoroughly every day while he is increasing his dose.

You may want to read the package insert for Lamictal. It lists all the adverse reactions and how often the happen (subtract the control group % from the treatment group % and that's the increased risk for a particular side effect).

Don't let the package insert scare you too much, either. There are some serious warnings, but most people are absolutely okay on this drug. The thing I like most about it is that it doesn't scramble my brain as much. I'm able to think and function much better on Lamictal than with the other drugs that I've tried (Topamax, Keppra, Trileptal, Gabapentin).
 
Thank you so much everyone! I do somewhat better, its hard to listen to a doctor tell you all of these things, but it helps to hear from people that have been through it. My son does get frustrated because of the things he can not do now, thats a big part of it I think. We are going to try the Lamictal and yes they said it will be low doses, not what it says on the package so hopefully no rashes, it sounds like changing meds is the way to go so he will feel better overall. I dont freak out in front of him at all, I dont want him to feel any differently around me than before, but sometimes when I see him struggling it just tears my heart out but I put it aside and deal with it later. I am so thankful that you wrote me back to give me some guidance. I will keep you updated on his progress, and I will try to support you any way that I can!
Karen
 
Roberts Dr appt isnt for 2 more months, which I dont understand, to me its serious and I am very worried about him so I am not sure why they dont want to see him sooner? I guess as a mother I think of worse cases. I looked up frontal lobe seizures, there seems to be less information on those, it did say that they can have nocturnal seizures so that is what he is doing now, when he is falling asleep he is jerking, its very scary to me, I guess just seeing him before makes me feel like when he is having these seizures then he is going to go back in a coma.
I really appreciate any input anyone has on the difference between frontal lobe and temporal lobe seizures. I hope everyone has a great day!
 
Hi, Karen,

Welcome to CWE!

I am so sorry to hear about the traumatic journey you and your family have been on, This is a great group to be involved with no matter what part of the journey with E you are on so be encouraged that you are not alone in your struggles and we will always be here to listen and support :)

Westy
 
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