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

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

Hi
I am sorry that you DD is experiencing my seizures.

When I was on 400mg of Lamictal last year I had a lot more seizures. My gp/neuro and I were not sure if it was from the drug it self or from the side effects. I suffered from severe insomnia so my seizurea may have been from sleep deprivation. Once my dose was reduced and Topmax was introduced my seizures have become a lot less frequent.

The best thing is to talk to you DD neuro and see what they suggest.
I hope that things get better for you all soon
take care
Honeyber xx

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

my 4 yr. old son has been going through the same thing! He used to get them maybe once a month, or every other. But lately he had had them several times a day, two weeks ago he had 7 in one day and a few times a week he has been having 3-4 a day. His neuro wants to increase the dosage a little quicker, so I hope that works. Are you increasing her meds?

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

Yes, we are increasing her meds. She has another 50mg to go before final dosing. Wow, that is coincidence between our kids. My dd will be on 150 as an initial dosing. WHat about your child? What else did your neuro say? Any indication that this was "normal". It is so frigtening to see all of these seizures out of the clear blue, when it is so out of the norm to have that many for your child, isn't it.

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

jake is currently on 25mg 2x a day and we will increase to 32 mg next week then we
will discuss further increases.This is his 13 week. The neuro said we might want to do another EEG (which was tourture) b/c the staff at the hospital were rude and he is very scared to do the whole thing over again. (I promised that I would'nt take him back ot that hospital for the EEG, but his drs. are there so it's kind of hard. Anyway I am also taking him for a sleep study b/c he might have sleep apnea and maybe he is getting them more often b/c he is not getting a full night's sleep. (Hopefully this is it b/c I don't want to try more medicine. He is on trileptal as well and he can start to decrease that when he is seizure free for 3 months (which doesn't seem to be happening). How old is your child? My son has partial complex seizures where he gets a scared look on his face and swallows a lot. What happens to your child?

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

now I'm getting scared my daughter is starting on lamictal nextweek.she will be tappering off trileptal and starting on lamictal.the trileptal has her fairly controlled but the neuro says that lamictal can help with memory.Iwonder now if its a good idea to switch.

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

well, I'm not sure if it is the lamictal that are causing them or other things like the sleep apnea. what are her experiences with memory. Does anyone else have memory loss. My son doesn't remember his events, but I really don't care if he does in fact I like it.

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

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

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

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.

Re: Re: Re: Re: Re: Re: Lamictal: can it make things worse befo

Oh, to answer your other question, my daughter just turned 4.

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

They didn't find anything on the MRI, so I guess it is Ideopathic. Does your
daughter act differently b/c of the medicine? Jake never has, he usually isn't even sleepy
after we give him the clozepam for the cluster seizures, but the last few days he looks and acts differently. He is more soft spoken, and like I said- he has come to me, or has made the face that the seizures are coming, but it stops very quickly. on the verge but they don't develop) I'm not sure if that is a good thing, like the med. is working - or it's something else. I'm going to call the neuro tomorrow. How has your daughter doing?
Melissa

Re: Re: Re: Re: Re: Re: Re: Re: Lamictal: can it make things wo

No she doesnt act different b/c of the meds. Infact the lamictal has stabilized her moods/behaviour quite a bit in a good way.

We are booked for a 3-5 day VEEG at the end of August. I'm apprehensive about doing this...particularly trying to keep a 4 year old entertained in a hospital room for that length of time.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Lamictal: can it make thing

hi there

If you want ideas for children's crafts, feel free to send me an email. :) ikidbanana @ hotmail.com

I love making up crafts, especially crafts for children.

Will you be confined to one room?

I'm not a parent, but I wonder if it would help to be able to keep as much of your normal routine as possible? Videos, crafts, colouring books, toys, etc.

Does she like doing things with her hands? I remember as a little kid being entertained for hours on end with playdough, big wooden beads, and barbie dolls. ;) Those three things were my life.

Good luck. 3-5 days is a long time.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Lamictal: can it make t

yes, i would love ideas for crafts. She does love doing things with her hands so we will need to be creative. I will email you.

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

My son is experiencing the same thing! He just started the Lamictal - 2 weeks now. He is on a very low dosage 14 mg a day. I'm not sure if we should stop the drug or not. It is very frustrating because we want to do the right thing. I definitely don't want him to loose the milestones he has made thus far!