Lamictal: can it make things worse before it makes things better?

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My dd has been on Lamictal since April and titrating upwards slowly. We have typically seen 1 seizure every 1 or 2 weeks over the past few months. Over the last several days, she has been experienceing much more frequent (averaging 1 or 2 a day) which is unusual for her. The other night she had 5 in a 10 hour period. Does anyone have experience with this and Lamictal? I am starting to lose hope that Lamictal will work for us but I have heard that soem AEDs can make seizure frequency increase before things settle down. I will call the neuro tomorrow, but in the meantime, thought I would see if you had any advice or insight? Thanks.

Comments

Re: Re: Re: Lamictal: can it make things worse before it makes

Submitted by laurensmyprincess on Mon, 2006-07-03 - 18:11

Mammt, your son's seizures sound exactly like my DD. She gets wide eyed, panicked, scared look on her face and swallows a lot (gulps...) also makes sounds like she is trying to catch her breath. How do you know your son has sleep apnea.

Re: Re: Re: Re: Lamictal: can it make things worse before it ma

Submitted by Mammt on Mon, 2006-07-03 - 19:43

do you know you are the first person to say gulps, like catching breath. Jake had one this morning and I swear he was gulping. Whenever I said mouth movements, everyone would say lip smacking, I would say okay, but never felt that was the right word for it. but you are right, he does def. gulp. Wow, how old is your child? My neuro was going to have Jake admitted to the hospital b/c they are concerned with the amount he is having, given the increase in lamictal. (just to monitor) They wanted to do a thourough overnight EEG to see what was going on, but decided to wait a bit more. Jake seems a little off, like he is on the verge of having them, but then doesn't, kinda like on the verge of a sneeze that never comes. He tosses and turns a lot, and seems to gasp every now and then during sleep. Last year before he was diagnosed, i almost had his tonsils and adnoids removed b/c I thought he had sleep apnea, and snoring which would interupt his sleep. The ENT agreed and we scheduled the operation, but then I spoke to my pediatrician and she told me unless he stopped breathing for about 30 seconds, it wasn't apnea and he might outgrow it. so, we cancelled the surgery and wouldn't you know it after a few more weeks it seemed to go away. Well, now that he has seizures (or now that we know that what he was doing every once in a while was having a seizure) it takes on a whole new meaning. Now I notice that he does toss and turn, & his chest stops rising for about 10 seconds and then he sorta snorts, gasps and turns over. This sounds like apena or some form of sleep disturbance so I figure if there is a chance that he will get a better sleep, we are going to have the operation. I have an apt. with a Dr. specializing in sleep medicine. We then might get a sleep study which will look at the snoring and they do a condensed version of the EEG so I figure having both done at once is better than doing them separately. Maybe I'm grasping at straws. It is so nerveracking to think what if this is causing them..what if this..I never knew anything a bout epilepsy before Sept. and one of the things I can't stand it all the uncertainty!

Re: Re: Re: Re: Re: Lamictal: can it make things worse before i

Submitted by laurensmyprincess on Mon, 2006-07-03 - 21:15

Yes, there is tons of uncertainty and loads of questions with E. I would describe Lauren's seizures as definetly gulping, not lip smacking. She is actually swallowing during them...her eyes usually get glossy (watery) too. Sometimes she can speak during them if I ask her a question. I feel so bad for her. I have a call into the neuro to find out about these weird increases in seizures. According to another forum I post on, some AEDs (Lamictal included) can cause short term increase in seizures, typically during med increases. We are on 125mg right now and need to go to 150mg, so we are almost there. Does your son have idopathic E? Lauren's E is caused by cortical dysplasia that was found on a MRI about a year ago. Sounds like our little ones have a lot in common, unfortunately.