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steven...
Lamictal
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I know that there is plenty of information on the net concerning this med, but I would like to hear from some real people who have taken it, or more specifically, have children on Lamictal. Our 14 yrold son has been on it, solid, for a little over a month now. I have noticed cognitive changes. He has always been a spacy kid, but it seems to be worse now. I keep hearing that Lamictal is not supposed to affect you mentally, but that is not what I am seeing in our son. He was on Dilantin, but still had a seizure every 4-6 months. I know that's not a lot, but we would like him to be totally controlled (who wouldn't?)During the switching process he had about 4 seizures within a few weeks, which is a lot for him. So now I am wondering if this change that I see in his thinking is from the seizures or this new drug, Lamictal. We homeschool so I work very closely with him and notice the changes. I have kind of rambled, but I sure would appreciate any input at all. Thank you
Recent Comments on this Discussion
Steven, I have a 7 year old little girl who has has epilepsy since a year old. We didn't medicate her until age 3. She has Absence and Grand Mal seizures. Lamictal was the medication she was on when she started Kinder. "Spacey" was how her teacher described her. She knew immediately that my little girl was not completely aware or even understanding what she was saying. We had to switch to Depakote halfway through the school year because her grand mal seizures got out of control. During this change she was overdosed because the Depakote blocks the liver from metabolizing the Lamictal. That's another story, but be aware of this and keep it in the back of your mind. Once she was on Depakote we had a completely different child. She was more aware and energentic and focused. She went quite the opposite way and I started to be concerned about ADHD. But we have worked through this with the help of an Accupunturist who does not use needles, mainly just herbal supplements. She is now learning and not spacey anymore. She does have learning issues and is behind, but because she is in public school she gets help by being under the Special Education umbrella. This has helped her tremendously because they have found her learning style and they use it to teach her. I commend you for homeschooling. That's not an easy task.
Epilepsy can definitly be scary. The road to finding what medicine is right can be a long one. I'm 25, and I've been having seizures my whole life, but was officially diagnosed with Epilepsy when I was about 18. I've always had grand mal seizures, and my mother has actually found me twice afterwards, where my heart had stopped. So I definitly understand how it is scary at first. I have also been on Dilantin since then. My dosage went from 200 mg in 2002, to 500 mg now, as I had several seizures while on the 200 mg, . In addition to the dilantin, I'm on Lamictal, as well as Seroquel for bipolar disorder. I've noticed that many medications that have anything to do with the brain can have it's own set of side effects. For example, for the dilantin, I have some short term memory problems. As he's on the medication longer, and his body gets used to the meds, the side effects should lesson. The thing to remember is that you have to stick to the regiment and you have to be positive.
My daughter is 13 and was prescribed lamictal for left temporal lobe epilepsy. The neurologist said that lamictal had the fewest side effects for his patients in his experience and that it also would be the safest (in terms of low birth defects) if my daughter wanted to have children in the future. It has definitely had an effect on her short term memory, but we are coming up with strategies to compensate for this. (Helpful suggestions from others on this board have been great!) Her grades are a little lower, mostly because she now forgets homework assignments and due dates, even when she has written them down, not because she is not capable of doing the work. I've noticed some confusion, too. She has started to be unable to find the exact word to use and will use a word that is close enough to understand her meaning, but not right. I'm hoping this doesn't get worse.
What we have needed to do (with her neurologists approval) however, to minimize the side effects of headache and nausea during the time her body was adjusting to the medication by slowing down the staggered increases in her dosage.
The GlaxoSmithKine starter pack that her neuro gave us is based on a standard build up from 25 mg to 200 mg a day over 5 weeks. We found that my daughter needed about twice as much time. When we increased the dose to the level recommended by the manufacturer she suffered incapacitating headaches that woke her up in the night and kept her up all night. By building up at half the dose recommended by the manufacturer the side effects are less severe and last much less time, too. She has had some increase in fatigue, but it is hard to know if that is the med or the lack of sleep from the headaches. Overall, her spirits and her energy seem good. Her appetite comes and goes, depending on the nausea. She has lost a little weight, but not enough for me to be concerned.
The side effects at a lower dosage and slower increase in dosage seem to occur about 48 hours after a dose increase and only last for about 36 hours. (When we were increasing the dose at the manufacturers rate the side effects kicked in at about 24 hours and lasted for 3-5 (horrible) days. It was to the point that my daughter was in tears and asking to be taken off the medication.)
So far, the lamicatal is working. No petit mal or grand mal seizures!
Molly
My daughter is 13 and was prescribed lamictal for left temporal lobe epilepsy. The neurologist said that lamictal had the fewest side effects for his patients in his experience and that it also would be the safest (in terms of low birth defects) if my daughter wanted to have children in the future. It has definitely had an effect on her short term memory, but we are coming up with strategies to compensate for this. (Helpful suggestions from others on this board have been great!) Her grades are a little lower, mostly because she now forgets homework assignments and due dates, even when she has written them down, not because she is not capable of doing the work. I've noticed some confusion, too. She has started to be unable to find the exact word to use and will use a word that is close enough to understand her meaning, but not right. I'm hoping this doesn't get worse.
What we have needed to do (with her neurologists approval) however, to minimize the side effects of headache and nausea during the time her body was adjusting to the medication by slowing down the staggered increases in her dosage.
The GlaxoSmithKine starter pack that her neuro gave us is based on a standard build up from 25 mg to 200 mg a day over 5 weeks. We found that my daughter needed about twice as much time. When we increased the dose to the level recommended by the manufacturer she suffered incapacitating headaches that woke her up in the night and kept her up all night. By building up at half the dose recommended by the manufacturer the side effects are less severe and last much less time, too. She has had some increase in fatigue, but it is hard to know if that is the med or the lack of sleep from the headaches. Overall, her spirits and her energy seem good. Her appetite comes and goes, depending on the nausea. She has lost a little weight, but not enough for me to be concerned.
The side effects at a lower dosage and slower increase in dosage seem to occur about 48 hours after a dose increase and only last for about 36 hours. (When we were increasing the dose at the manufacturers rate the side effects kicked in at about 24 hours and lasted for 3-5 (horrible) days. It was to the point that my daughter was in tears and asking to be taken off the medication.)
So far, the lamicatal is working. No petit mal or grand mal seizures!
Molly
For more information on lamictal please visit:
http://www.epilepsy.com/epilepsy/medicine_kids.html
Hi,
Noticed your message as I was looking for info on Lamicital. My son will be 4 in a week and just about 1 month ago started having seizure (the staring off type). Just out of the blue it happened and I probably wouldn't have noticed it so soon if my cousin (my age) grew up having Epilepsy and had all sorts of seazures. Anyway, I think we caught it right away and his Nuroligist did an EEG and MRI as well as blood work and he has diagnosed him with Generalized Epilepsy and has put him on Lamicital. We are starting off slow with only 5mg at night, and then up to 5mg (at night and in am) we are working up to 25mg 2x daily. Anyway, he has the seizures anywhere from 4-8 times daily a few seconds each and at first with just 5mg at night I noticed a difference, but now he is up to 5mg day and night and it seems right back where it was and he even had a different type of seazure today where is is staring and his arm is moving. I noticed your son is 5 and on Lamicital and was courious if it worked and he is doing fine on it or if you had to switch. Also if you could give me other website to look at for more info on children on this drug. This is all very scary and new to me as he was fine up until about a month ago and now he has seizures all day long.
My daughter is 5 and we started noticing the seizures at the age of 2. After a few hit hit and misses with some other meds,the neurologist finally put her on lamictal. It worked for awhile, but then it stopped and she started having tremors. We then switched to depakote which put her in the hospital with high levels of ammonia and started eating her liver. THen we switched to keppra, then topomax. None have helped. Her seizures are now worse (she started with petit mal). She has severe behavioral problems which, if anxiety escalates, turns into a grand mal. They wre now going to try either the ketogenic diet or the vagal stimulator.
Just read your post and it looks very familiar! I was diagnosed with epilepsy when I was in the 8th grade. (possibly induced by a head injury). I was on phenobarbitol and dilantin from age 14 until age 26 when I wanted to have children. We successfully weaned off the phenobarbitol but I had a seizure when we tried to wean the dilantin. I had a daughter (very healthy) when I was 29. I haven't had a seizure in over 20 years but I am now experiencing the problems with bone loss, vitamin D deficiencies, b-12 deficiencies and of course, let's go ahead and talk about the estrogen deficiencies and the ovaries beginning to crash. (I'm 48 now and have been on Dilantin 300 mg/day for 34 years. I have done really well from the seizure control standpoint but upon an evaluation about 6 mos ago, the neuro said that it was imperative that I remain on seizure medication. She suggested that I switch to Lamictal, that there did not seem to be the same bone side effects with it that there are with Dilantin. I am on my 6th week at 200mg per day and am not sure how much I should be taking before I start to wean off the Dilantin. So far, I have felt better than ever with the Lamictal on board. I feel more energetic and cognitively I feel better than ever. I feel like my old self again! I am very nervous about weaning off the Dilantin and am sure that it will be a very slow process. I have also just started taking birth control pills to help level out the estrogen deficiency from the menopausal standpoint. I understand that Lamictal can have some effects on B/C pills and vice versa. Any info on this part of the deal? Is there anybody else out there that has successfully made the transition from Dilantin to Lamictal that has any additional insight regarding Lamictal and B/C pills and Vitamin D levels? Thanks for your help!
my 7 year old daughter was diagnossed yesterday we are still in the hospital doing testing i dont know alot about this illness but am researching as much as i can the only thing i am not understanding fully is the treatment some parents say that the side effects are much worse than the seziures them self some people are saying we should use this drug or that drug which medication have you found to be the most effective with less side effects?
thank you keri very scared mother
Hi I'm Robyn and i just joined this site today and have been reading all of your messages, and i'm so relieved to know that i'm not the only one out there with epilepsy. I was diagnosed with petit mal epilepsy at the age of 12 and was put onto Epilim. At first i was having absence seizures daily, but then began to have seizures where i would shake uncontrolably for a couple of seconds. The Epilim was successful in controlling my seizures but made me put on 10kgs (sorry i'm in Australia, so we don't use the same system of measurement) of weight over a few years. I was taken off Epilum at 15 in the hope that i would be completely seizure free. However after a year of no seizures, i stayed up all night one time, and brought on what i think was a convulsion, waking up in bed that morning to find bruises down my right side, and a mouth full of ulcers, from chewing on the inside of my cheeks.
So the seizures started again from there. About a year later after trying to hide the seizures from my parents, i went to a neurologist who put me onto Lamictal 300mg a day. I am now 20 and the medication has been working fairly well in controlling my seizures over the last fews years, however over the last 2 months my seizures have come back, some days i have small ones where my body will just sort of jolt for a second and other times i'll have ones where my body will shake all over for a couple of seconds. I increased my dosage to 400mg a day (without asking the doctor) but its still not working. And i'm scared that when i go back to the neurologist that he might tell me that i can't drive for a certain amount of time, or permanently which would be devastating to hear. Anyway I read somewhere that taking vitamins can possibly affect the absorption of Lamictal.
I was wondering if anyone has or is having the same problem as me, where Lamictal has been working successfully for quite a while, but over a short amount of time it has failed to stop the seizures from coming on.
If anyone has any comments on their experiences or advice, it would be great ti hear from you.
Thanks
Robyn.
Hello:
I'm new to the board today. In July my 15 year old had a grand mal seizure while at an early morning football practice. He was put on tegitrol. In addition school has also become difficult (in 4 honor classes). Since July he only had one small seizure (not grand mal) so twitching in the morning. He ended out doing ok, with the lowest a C and other grades ok. He was part of the football team (cardio only) and stat guy. The coaches and kids were awesome. He got a special award about how he was an inspiration to the team and taught the kids what NO excuses really meant.
They are switching him to Lamictal - he had a full blown seizure the day after christimas in his sleep (7am ish). He didnt remember it other than having a sore tounge. He said he couldn't sleep and when he had the seizure I saw his game boy was on so perhaps he was up to 1 or 2.
Some of these posts are scary about Lamictal bringing on siezures. He is up to 100 am 150 pm. We go to the Neurologist this week for an EEG.
School vacation is over tomorrow, I'm nervous about getting up early. Hopefullly he can get to bed very early tonight.
- Robyn
The only person that can tell you what to take, and how much is your neurologist. Please don't take advice about wether to take it or not from any other person. Each drug is designed to work on certain types of epilepsy.
Messing about with drugs without medical backup is very dangerous for someone with uncontrolled epilepsy. If the drug is messed around with in the wrong way the threshold for going status elepticus is reduced by a large amount. Sure some of the drugs have side effects, but status elepticus, has far more, and far, far worse. Remember that most kids have them stopped at an early age, and 80% of all people with epilepsy have them stopped eventualy. Your neurologist will have years of experience backed up by EEGs, MRIs, CAT scans, and reports from you.
One thing more Keri, time your daughter's seizures, she has only started and you need to know how long they last. My family calls the medics out after three minutes. Try to identify anything that may be a trigger, some types of epilepsy don't have triggers, but some do. Seizures can also lead to bowel and bladder release, and memory loss is a side effect of both drug and medication.
What drugs is your girl on?
Hi,
My 4 year old son has been diagnosed with Epilepsy for about 2 months now and has been put on Lamictal. The doctor started him on a very low dose and gradually moved him up. With each increase, I would notice a very mild change in his behavior (energy level, mood) and it would get better after a few days of the increase. I figured this was probably normal and his body just had to get used to the increase. Somewhere between 10 and 15 mg the seizures stopped and when we increased to 20mg his eyes started bothering him and he was getting dryness and mild redness around his eyes and on his cheecks only. I new a rash could be a side effect of this med, but didn't quite realize how serious the rash could get until I reaserched online and then I was terrified. We saw the Neurologist the next day and he said to keep the Lamictal at 15mg since its working at that level and he said the serious rash usually is all over the body, he has never seen it in just one area like this and that he really thinks it looks like Eczema. So he gave me some Eczema med and I've been keeping his face moisturized and this has taken the rash away, but it comes back and I treat it and it goes away again. Its 100% better and with treatment it goes away.
My question is, since it goes away with Eczema treatment, is that a definite sign that its not this serious rash and we should continue taking this medication? or is this a sign that we should change medication? I really hate to change, since its working at such a small dose and I know that other than the rash, this med has minimal side effects and would hate to change if it really is just treatable Eczema. On the other hand, I would never want to ignore possible signs of a serious problem. Its been about 3 weeks since the first signs of the rash and, like I said, Its gone now and when he starts touching his face, I put lotion on and it goes away.
Anyone had a similar experience or some advice to offer me?
thanks, A very worried mom!