Lorilou- Lamictal follow up

[langansmom]

Hello there! I noticed in your response to Paul about lamictal side effects you mentioned giggle attacks. I almost fell out of my chair. We see something similar with Langan and I have been losing my mind trying to come up with a "why". Here's what we see- let's see if it sounds familiar.

When Langan has gone a few days without a seizure, she will have a "fabulous" day where she is all smiles, giggles if you so much as touch her. She'll laugh like crazy in response to your laughing. On those days, she doesn't eat or drink very much but is just super happy. Even brushing her hair, which is usually a sure ticket to a scream fest, doesn't phase her on those days. Then, never fails, that night she has a seizure. Any similarity?

Langan is on a really low dose of lamictal. My latest theory (before I saw your post) was that her body isn't processing the lamictal properly (she has a suspected but undiscovered metabolic disorder) and that day is the culmination of the lamictal building up in her system. I know it's a "mood stabilizer" so I thought maybe a large amount could cause the giggling. And with too much in her system, the seizure hits.

Not sure if that's the reality or not but it's my best guess right now. My old theory- that she was so happy from the stretch of seizure free days and then the seizure hit b/c of the increased activity- doesn't seem to work as well.

Any thoughts are greatly appreciated. I can't tell you how excited I am to see that someone else saw this with lamictal.

((((hugs))))

[CoolAngel28]

langansmom,

Sorry I'm butting in here,but,I think the lamictal has some mood stabilizing qualities.I'm on it as an adjunct to TegretolXR,and it has helped me with the jitteriness effect that the TegXR causes.

[AzMomOf8]

langansmom,

Sorry I'm butting in here,but,I think the lamictal has some mood stabilizing qualities.I'm on it as an adjunct to TegretolXR,and it has helped me with the jitteriness effect that the TegXR causes.

OMGoodness! Madeline is on the exact same meds (Tegretol XR and Lamictal!) Her Dr. shakes his head and says that it makes no sense to have her on these meds together (to control her seizures) because they both work the same way but...:)

So, nothing to add, just wanted to say, HEY, we're using those two meds too!

[Alexia]

My daughter is on it plus a low dose of Klonapin. She gets periods of the giggles, but also gets really aggressive at times.

[RathyKay]

I remember LoriLou writing about this, whenever that was. I also remember finding this for her at the time:
http://us.gsk.com/products/assets/us_lamictal.pdf
This has got everything about Lamictal, including side effects. Check out Table 7 (you actually want the continuation of the table on page 33). Under "Nervous System" is "Emotional Lability." (Don't worry; I didn't know what it meant when I first saw it, either.;)) Check out Wikipedia's definition:
http://en.wikipedia.org/wiki/Emotional_lability
An individual may find themselves laughing uncontrollably at something that is only moderately funny, being unable to stop themselves for several minutes.

Sorry I haven't been around much. Kids were off school last week and things have been crazy with science projects, Girl Scout cookies, and constipation.

[kass]

It's been forever since the last time I have posted here, but I do come and check in on everyone regularly. I know only the "old timers" might even remember me anymore.

ANYWAY....

I am kind of freaking out reading this and Lorilou's post!! Chance has been on Lamictal for years now.....atleast 4 and maybe 5. I love it because he was so dulled down by the Tegretol and Carbatrol he'd taken before that (he was dx'd with complex partials when he was 5 or 6) and he "woke up" when we got him on to the Lamictal. However, some time ago he started having these laughing episodes that sound exactly like what you all describe!! Like your kiddo Lorilou, he wets himself almost every time, even while being on Ditropan for a neurogenic bladder.

Interestingly we're seeing it happening right now. Yesterday we had two episodes and the day before that, one. What I have noted this time that I had not made the connection before now is that he is also having one of his episodes where his auditory processing and word finding have taken a nose dive. I honestly don't know whether there is a connection between these two things or not, but the timing is certainly interesting.

Our neuro has said they sound like gelastic seizures, but a connection to the lamictal has not been made. I hadn't made the connection either and am not even sure what to think!!

I did want to share what we have seen here too, just in case it helps someone else.

BIG hugs,
Kass, proud mom to Chance (13-Mito), Madison (10-Mito), and Abigail (9-Mito)

[kass]

We are also having issues with getting him to sleep too!! After years of good control of this with Melatonin, it's now not touching the issues. He's currently taking 6-9mgs of Melatonin a night, 200mgs of Seroquel, and I just added another herbal sleep aid that is primarily Calcium and Magnesium AND I've got him taking 600mgs of Calcium 3x a day. All in all, enough to knock a horse out and it's doing little or nothing. We have a night or two where I think he is just so exhausted that he'll fall asleep pretty quickly, but then we'll have 2-4 nights where it is 1-3am before he can nod off. Again, I never knew this could be an issue with Lamictal and suspect that if I looked back it probably all started being an issue around the same time we made the change.

Ugh.

BIG hugs,
Kass

[langansmom]

Fascinating!

I don't think Langan's episodes are gelastic seizures- they definitely are interactive and I can get her to giggle by doing something silly- they are just a vast overreaction to what may only be mildly funny (at least to me, although maybe me making funny faces is really hysterical and I don't know it.... )

The sleep issues are something we have fought each time we've been on lamictal. Our neuro warned us on the front end that, other than the rash, insomnia was the most complained about side effect. Langan finally adjusted for the most part and now that we're slowly starting topomax, she is (knock on wood- no need to jinx here) sleeping much better. We'll see how it goes when we start the lamictal wean.

So for those of you who have seen this, do you usually see it preceding a seizure? We always see it the day before she is going to have one. And what dose are/were your kids on when you saw it? I am sticking with my theory that it happens when the levels build up in Langan's system.

Thanks!

[kathleenandjoe]

Holy cow!

Becca sometimes laughs until she wets herself too. . . it is usually because of something funny to her. . . but usually not THAT funny. . . and she will laugh and laugh like she cannot stop. After looking back - it started about the time we got on Lamictal. Weird. I would have never made that connection. I actually was questioning bladder control.


Also - she sleeps like crap on this med. Very little sleep overall.

Love that it was unlike the ones that so subdued her. . . .or got her aggressive. . . but can we ever win?

Hugs and good mommy laugh,
kathleen

Adding - I looked in her notebook and the first episode I noted was when we were up to 25mg twoce per day. Now we are on 50mg twice per day still and holding. Same thing - laughing uncontrollably at times for little to no reason. I do not see any pattern to it though. Happens an average of 2-3 times per week it seems and happened more often when we were still titrating up and for first few weeks that we reached where we are now. I cannot get over reading of this today!

Luckily we have only seen Becca have three total complex partials and no other of her seizure types since starting lamictal (prayers, knock on wood, etc etc). The last one being over a month ago now Thank God. So no connection there that I see for us, Wendy. Your theory makes sense for Langan though with the suspected metabolic stuff. I think WE should write a paper!!!!!

[lorilou]

I'm not crazy!!!! WOW...reading this post makes me feel somewhat sane today :eek:

Here's Noah's history...

He started on Lamictal in September 2005 when he became toxic on his increased dose of Trileptal. We first noticed this giggling at about January when we reached 50 mg of Lamictal BID. I mentioned it to his neurologist who really had no clue what was causing it. It would get better at times but it would get worse everytime we raised his Lamictal. At Noah's maximum (100 mg BID) his behavior was HORRIBLE. He wasn't sleeping at all and he would have several of these laughing episodes everyday (to the point he was disrupting his classroom).

These definitely are not seizures. Something always sets them off that Noah thinks is funny. Most of the time it is something funny, just not funny enough to make you pee your pants KWIM? For quite some time Sponge Bob was forbidden in our house. This has put Noah back in pullups after two years of being completely pottytrained.

We're down to 25mg BID (along with 250 mg of Keppra BID) and when I posted on Saturday we had not seen any of these episodes for over a week. But I guess I spoke too soon because Sunday/Monday they returned. Noah was up for about 4-5 hours Sunday night - just could not sleep. No seizure activity - just awake. This caused him to be very giggly yesterday - I even kept him home from school since he didn't seen himself. He slept great last night and since I haven't heard anything from school - I'll assume all is well.

We started seeing a local neurologist a few months ago. His theory is that Noah doesn't process Lamictal very well -- that his levels are much higher than they should be on his dose (we only ever got up to about half of the amount of Lamictal that he should have been taking - for that reason Lamictal is not considered a "failed" drug for Noah).

The only explanation I can come up with for Sunday night is that Noah had WAY more dairy on Sunday than normal. We keep him relatively dairy free most of the time. On Sunday he had a glass of milk (some I NEVER let him have but DH gave it to him), tacos and pizza. Could this slow his system down enough to let the Lamictal build up to what his body considers a "toxic" dose?

Maybe I'll print out this topic and show it to Noah's doctors who don't believe the Lamictal and his laughter are connected????

[kathleenandjoe]

Intersting. . . Becca hates milk .. . once in a while will drink chocolate milk. She eats very little dairy. I will have to note the episodes and her dairy (like when she eats cheese, yogurt on rare occasions).

Hmmmmmmmmmmm.....

I too will print this as we go to neuro March 5th.

[langansmom]

Lori-
Wow. Noah's episodes sound so much like Langan's that it really can't be coincidence. Langan is on a low dose of lamictal for her size- 33 lbs and only a total 125 mg a day (50 am and 75 pm). We also notice that she is often up and awake the night before this- but we do see a seizure the following night in almost all cases (I would have said all except she was a giggle monster yesterday and I stayed up most of the night watching her like a hawk- no seizure and she slept like the dead).

I LOVE that your neuro also has a "not processing it correctly" theory. And here I was thinking I was out there with that....

We haven't seen any dairy connection but I don't keep close track of school foods. Langan is pretty low dairy and we usually use almond milk at home but that is something to track as well.

What was that song? "Things that make you go hmmmmm.".....

[RathyKay]

I hereby interrupt this thread to say "Dairy is evil." I now return you to your Lamictal and giggling discussion.;)

[kass]

We see our neuro late next month too and I hope to share this thread with him also. For those of you seeing your's sooner, do you mind sharing any thoughts they might have here??

I have been skeptical about Chance's being gelastic seizures since day one, however I think the wetting was making it less clear since they were a clear part of his seizures for a while. Like your kids, something funny does occur, it's his response being so over the top that was just not "normal".

I have not seen a clear correlation between these episodes and him having a seizure, but then, I wasn't really looking for it either before now so I'll let you know what I see. I can say that something is happening right now because his word recall and auditory processing has taken a nose dive the last two weeks. The docs debate whether these "regression" episodes are stroke-like events or seizure related and honestly I just don't know. They are frustrating and scary is all I can say.

Chance is on a relatively low dose of Lamictal. He was on 100mg am and pm for a long time, but we raised it to 100 am and 150 pm about a year ago to try and end some break through seizures we were seeing and since his levels were on the low end. It seemed to stop most of the breakthroughs we were seeing so, I was happy.

Interestingly...and frustratingly.....the sleep issues started increasing about 9-10 months ago, so not long after we made the increase in the Lamictal. Definately a "make's you go hmmmm" moment.

I am torn though.......I am terrified to change seizure meds. The Lamictal and Neurontin (that he was given for peripheral neuropathy but helped some of the breakthroughs we were seeing) work well together and for him.

We can absolutely live with the laughing spells.....I know it is hard for him because of the wetting, but mostly they happen at home so we just change clothes and move on.

The sleep issues though are taking a huge toll and I don't think we can ignore the possibility that they are Lamictal related. Maybe we could try reducing back down to 100 am and pm and see if we can get back to where we were before.....but then we may see the break through's again.

I need to thank you guys though......we are in a difficult situation right now because Chance has several concerning things all happening at once and I was wracking my brain yesterday trying to come up with some connection to something and was having little luck. When your child takes 13 medications and 8 supplements, trying to determine the culprit can be an insane challenge....determining if it even IS a medication issue is an insane challenge. Atleast 2 issues we're struggling with right now I feel strongly can be explained now thanks to you guys. Now just to figure out all the others!!

Please, if you have time, keep me posted on where things go from here and what your neuro's thoughts might be on this.

BIG hugs,
Kass, proud mom to Chance(13-Mito), Madison(10-Mito), and Abigail(9-Mito)

[lorilou]

LOL Kathy!!!

Kass -- I don't think Chance is having gelastic seizures if he has a reason to start laughing. From what I understand that would be laughter at inappropriate times. Noah's reaction is definitely over the top also --- like I said earlier, Sponge Bob was on the forbidden list at our house.

Langansmom -- I don't think it is a coincidence either. Noah's dose was even lower based on weight -- he's 65 lbs. But if we get up to 50 mg BID he just doesn't tolerate it. Could the seizure be because she's sleep-deprived after a night/day of being giggly and awake?

Noah is now home from school and from all reports he had a good day. He seems back to "normal". Definitely makes me think about that dairy connection:confused:

We've always thought that Noah's seizures were food related. His seizures usually involve vomiting. Usually the seizure stops once he gets everything out of his system. We haven't seen any seizures since starting Keppra almost 5 months ago (I probably just jinxed myself by saying that). But that doesn't mean the food doesn't still irritate his system. Could dairy slow down his digestive system?

This is definitely an interesting topic...

[langansmom]

I did have a period where my theory was that the sleep deprivation was the culprit, and that it was made worse by the lack of sleep/giddy days. But it hasn't followed that pattern. Her seizures seem to come even if she slept great the night before- but they are very often after a giggly day, so I am back to my theory about the lamictal building up in her system.

Our problem is that we have started to see some myoclonic activity- always the day after one of her typical seizures. Our neuro said lamictal is notorious for causing/aggravating myoclonics, so even though our dose and level (7.1 last check) are low, we can't go up without a risk of becoming more familiar with the myoclonic monster.... So, we're on to topomax, which scares the pants off of me. With lamictal, at least we knew what we were getting. And the sleep issues were finally under control. Sigh... A whole new world.

I'm supposed to call the neuro tomorrow to check on things so I will ask about the laughing. She usually knows about side effects that I don't hear about anywhere else so it'll be interesting to see if she has heard this. I'll let you guys know!

Oh, and Kathy, you crack me up. LOL. We are lower on dairy- promise!!

(((hugs)))

[kathleenandjoe]

So we got back from the neuro just a short time ago.

"I do not recognize that to be a side effect of Lamictal in my experience, but you are adding to that now I see."

He's not young and has been practicing for 15 years in pediatric neurology. He did say it was a mood stabilizer of sorts (I knew it treats bipolar too) and that it could possibly have heightened emotional respsonse of happiness - and that if it was to happen it would happen in children.

So ladies. .. . . that is about as far as I got on this topic before it was onto the lack of sleep (he claims is not only due to lamictal but that we saw such a great need for sleep on previous meds that it seems bad now). I do not buy that one. I have the melatonin. ..but have not used it YET.

Then it was onto the other 20 questions for him. Just thought I would share and I hope you will too when you see your docs next!

[kass]

I really appreciate you sharing your neuro's thoughts on this!!

All three of my kids had sleep studies recently and we recieved the results last week and I was able to talk to the sleep doc at length. All three are getting too little deep and REM sleep and she feels like it's medication related in all three. She said any of the neuro meds really mess with the sleep staging....Chance is on Lamictal and Neurontin, Madison is on Neurontin, and Abby is on Reglan for motility but it is considered a neuro med too. Ugh. All she could really offer was trying to reduce the dosages of these meds, something I am just not sure is possible. So I guess we confirmed their sleep is messed up, but not much else!! LOL and grrrr.

We have used Melatonin for years with all three kids, and prior to this last bad sleep spell with Chance (that I am just sure is related to the increase in his Lamictal now) it has worked like a charm. We have been told by the sleep doc at Children's that you can safely give as much as 10mgs, but the beauty is that once a good pattern is established, you can drop to as low as 1/2 of 1mg and get the same results and we have seen that here. We usually just give 3mgs here and don't mess with the dose much. When we have dropped lower invariably something knocks us out of the good schedule and we have to increase it again, so just easier to leave it there.

I did have one child, my youngest, who initially had a rebound effect on it.....she did NOT sleep that first night it was given!! We tried some other things for a little while and then out of desperation tried the Melatonin again and it worked like a charm.

We were also told by our lady at GNC that Calcium and Magnesium are important for good sleep so we have increased both over here, just to see if it makes a difference. It's not obvious at this time, but we're early into the trial. Thankfully Calcium and Magnesium supplements are inexpensive.

Anyway, hope the Melatonin does the trick for you guys there too!! We see our neuro here the end of the month and I will let you know what his thoughts are.

BIG hugs,
Kass, proud mom to Chance(13-Mito), Madison(10-Mito), and Abby(9-Mito)