Out of Control Seizures

[lorilou]

:mad: I HATE seizures!!!! :mad:

Noah had a wonderful summer with only one seizure all summer - back in June. We upped his Lamictal to 75 mg twice a day and everything was great.

But of course everytime you start to let down your guard....BAM!

Thursday 9/21...seizure after he went to bed. It was pretty short and didn't have to use Diastat. Neuro upped Lamictal to 100 mg at bedtime.

Of course the Lamictal parties started...he was up for hours every night after we put him to bed. This was no big deal in the summer but now that he's back in school he has to get up in the morning...

Sunday 10/1...just over a week later..another seizure after being put to bed... another short one with no Diastat. Neuro decided to wait and see how things progressed since we had .just made the increase.

Saturday 10/7 (last night)...not even a week later...another seizure after being put to bed. This one was a doozy...it took TWO 10mg Diastat to stop. It was the first Diastat we've used in over a year - I wasn't sure about giving the second one but since he's been on the same dose since he was 4 years old I figured it would be okay since he's much bigger.

Now what??? I plan to call the neuro tomorrow morning. I don't think Noah has ever had this many seizures in this short amount of time - usually we have at least a month between seizures. I don't know if the neuro will want to increase the Lamictal with Noah's sleeping problems (which is probably adding to the seizure problems). He mentioned trying Keppra next but the stories I hear about Keppra scare me -- Noah's behavior isn't the best as it is.

I just want the seizures to go away.....:mad: :mad: :mad:

[kathleenandjoe]

I hope that things settle for you all soon. That is scary.

I am definately with you in the seizure haters club.

Hugs,
Kathleen

[Firewing]

Lori,
I am so sorry, siezures suck!!!!!!:( Maybe it's time for another EEG to see what's going on.

[holly0817]

Wow, this sounds so much like Anna's experience. She was on Lamictal for 15 months, about 4-6 weeks between big seizures with sleep issues, eating issues, and some behavior problems. She maxed out on 100 mg 2x/day, but that made her toxic, so her best therapeutic dose was 75 mg 2x/day (she was almost 5 at the time and around 38-42 pounds). Nearly everytime she had a seizure, we'd make a dosage change.

Her last seizure on Lamictal was on the school bus and we were spooked enough to want to change meds to achieve total seizure control. She went on Keppra next and it was a nightmare, as were the next 2 meds we tried. We finally decided to take a break from AEDs and let her body detox. That was 5 months ago and she's not another TC seizure (it's actually been over 7 months total since her last sz)! Meds are so individual and such a trial and error process... for Anna it looks like the Lamictal was causing or at least lowering her threshold for seizure activity. She's had some anxiety, aggression, and other behavior problems (for which she takes Risperdal, a true miracle drug for her) and she was so unstable at one point that we thought the Lamictal may have been helping keep her moods stable regardless of the seizures. So this summer we tried her back on Lamictal for 1 month at only 20 mg/day. She started having absence seizures; we took her off the Lamictal, no more absence seizures. Interesting huh?

I just wanted to share our personal experience because it sounded so similar to Noah's. Knowing what I know now, I wouldn't have changed her dosage everytime she had a seizure. I also would have questioned the neuro more and listened to my instincts a lot more. I know she's not out of the woods yet, but we are feeling much more optimistic.

Let me know what happens. And big giant hugs, we HATE seizures too.

[Earth Mother 2 Angels]

Lori~

Many AED's, including Lamictal, can cause the opposite of the desired effect and elicit more frequent seizure activity. It seems that Noah's increase in seizures coincides with his increase in dosage, so this is a worthwhile thought to pursue.

Sleep deprivation will definitely be a contributing factor in increased seizure activity, and if Noah is having this as an adverse side effect to Lamictal, then that needs to be considered as to its value in treating his seizures.

You might also see an improvement in behavior if he gets more sleep, and if he isn't in seizure mode, and if he isn't having behavior issues as another adverse side effect of Lamictal.

Something I realized with my boys, and from others' experiences here and elsewhere, is that some AED's have a honeymoon period, after which their efficacy fades. That is also something to think about with regard to Lamictal and Noah's recent increase in seizure activity.

Saying a prayer that you get to the bottom of this and find the best treatment to stop Noah's seizures permanently.

I have no words strong enough to convey adequately how very much I despise seizures. My thoughts are with you and every mom here who knows exactly what I mean.

Love & Light,
Rose

[Tracy Sheppard]

(((Hugs))))
I am no expert either, but I agree that with the lack of sleep that has to be adding to the seizures. I too, would be looking at the correlation of the increase in meds to the increase of seizures. Again, Prayers that the seizures stop. You are in my thoughts and prayers. I know when we did meds for Megs seizures always seemed that the meds made it worse. ARGH!!! Hugs and love and prayers....
Tracy

[Brandon's Mom]

I just wanted to add Brandon's name to the list of those who's seizures increased while on Lamictal to show you that there seems to definately be a trend here with that med and our kiddos.

AD=difficulty sleeping
Difficulty sleeping = fatigue
Fatigue= seizures

Boy, we've dealt with that vicious circle here as well. :rolleyes:

I hope you have better luck than Holly had with Anna and I had with Brandon, finding the right med to get Noah's seizures under control.

[Fayelle]

Wow I am so sorry to hear this....

I am also in the seizure haters club....

How frustrating it must be!

I have also heard that certain AED's can give the opposite effect and cause seizures...Especially if the seizure type and AED are mismatched.....

I have heard 2 things about Keppra, either it is the best thing since sliced bread for some, or its the worst thing ever and should be buried in the nearest cemetary never to be dug up again....

We had the latter experience with it and our sweet Xander turned into freddy krueger on steroids....

I agree with many here about the fatigue causing a lowered threshold to seizures, awful cycle that one.....

My hopes are with you in finding the right combo to stop the seizure nightmare.....

Wishing you the best!

Fay

[glad2beadam's mom!]

I also HATE seizures....sorry to hear Noah's been having such a hard time.

Adam has been on Keppra since April and has had good results with it with none of the negative behavioral side effects you hear about. I guess we are lucky. We started with a super small dose and increased it very, very, very gradually. I was happy to see the drug didn't take my Adam away and to see that it has reduced his seizures.

I am of the opinion that Adam's seizures are likely to never go away or be taken away completely by any AED. If we can reduce their severity and the amount he's having per day, then an AED can be successful. So far Keppra has done this for us. Our Neuro said that a person's body does build up a tolerance against an AED after awhile, however he said Keppra does this less than any other drug he knows. Sounds like he was trying to say in his experience it works better longer than any other drug he's seen. We shall see with time. We very likely may be increasing his dosage soon since he's gained a bunch of weight, we see our neuro. this week.

Also we give the Keppra in three equal doses a day, which I think is helping. We tried just in the am and pm and the seizures started increasing.

Our PT, who wants to be a Neuro. wonders about the drop in seratonin/melatonin in our kids who's seizures tend to be limited to late pm at bed time or right after waking. Could the flucuation in those levels be to blame partially for the seizures? Who knows...I do know that Adam's most always happen within an hour of waking. It doesn't matter if he wakes at 6 am or 8 am - that hour after he wakes is when his body wants to seize. I am going to ask our Neuro on Wednesday about it.

[Denae]

We are joining you in the seizure haters club.... Long time members :(

I really really hated to see that Noah was having seizure issues.

Riley is on Keppra for the second time now, the first was a disaster, and the second is turning out to be worse. Lat week when I talked to the nurse about it she said "yes, irritability is a listed side effect" I felt like smacking my head on the wall and screaming- DUH- A friend too her sons for a second opinion and the neuro told them that Keppra shouldn't be given to a child that already has behavior/ mood issues.

Reading the responses on this post makes me wonder if Riley may be better off with her dose divided up into three equal doses and not just AM and PM...

((hugs)) and fingers crossed that things have calmed down for Noah.

[RathyKay]

(((Hugs))) Seizures suck.:(

I was just kind of wondering about the timing... is there something in the air that might be affecting him (allergy)? Does the school spray for bugs and that's bothering him? Sort of a build up over the week and then boom! get hit on the weekend? Change in the weather (more mold inside the house and less fresh air)? (And you should take this more as a statement on the messiness of my house, as opposed to how neat or clean your place is.) Any routine changes? Diet changes as summer disappears and fall emerges? Not sure if this helps at all, some of that there isn't a lot you can do about it.

Tom hasn't had a seizure since the beginning of June. But, I'm not really "expecting" any until he gets sick again (he got a cold his second week of school and no seizure).

Keppra was very good for Tom, but we did start with a small dose and go slowly. I do kind of wonder about Keppra and kids that already have behaviour issues. Tom has always been pretty easy going.

Hope you can figure things out and end the weekly cycle. Two Diastat! (((Hugs)))

[lorilou]

I've actually looked at the past couple of years and Noah has been pretty much seizure free all summer. But once school starts so do the seizures. I really think it is a sleep issue...in the summer he can sleep late. He has such a hard time going to sleep at night - he's up until at least 10-11 pm every single night. So he's just not getting enough sleep...thus the seizure cycle begins.

[just laurie]

I hope you are able to find a way to help him get more sleep. If nothing else, daylight savings time is ending soon. Maybe that will help him bump his falling asleep time an hour earlier. It would be really nice if more sleep would do the trick...

Laurie