Anonymous
Post 03/12/2024 12:26     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:Yes! DC has taken it for a few years, off-label. It has improved her mood regulation without any side effects. Full disclosure: I've been taking it for 10 years for PMDD.


Hadn"t heard about it used for PMDD.


My sister takes it for that also. Lamictal is actually a very well tolerated brain calming med. it’s side effect profile is mild comparatively.
Anonymous
Post 03/11/2024 21:57     Subject: Lamictal for asd
Such a thoughtful response and I will second the “watch carefully to see if it is actually helping” recommendation. And have another apptmt set up with in a very short period.

I would take detailed notes - daily for sure and even hourly or every couple of hours if possible. I too regret waiting and anytime we have had success I have see a bit of improvement with in a week. It’s really hard to know that without notes. It’s also super helpful when you go back and show the doctor the data- and whether it is actually helping or not.
Anonymous
Post 03/11/2024 16:03     Subject: Re:Lamictal for asd
Anonymous wrote:OP here. Thank you for all the feedback.

I didn't want this to become a debate on the side effects of the drug. Was really looking feedback on the experience with a drug. We are well aware of them and had a lengthy discussion with the doctor. Our doctor also agreed the rash is very very rare and in his many years of prescribing the drug he has never seen it. BUT thats why you take a low dose to start and slowly increase. For many reasons he thought this would be a good drug for our child. And everything i have read is that many people have had lots os success.

Also, the comments to just get a second opinion our somewhat frustrating becuase its just not that easy! I wish there were tons of well qualified/expereinced pyschs who know complicated kids like mine. But there aren't and the few that there are have long waitlists. Believe me we've tried.

Again, didn't want this to turn into a debate. There are reasons we are considering this drug and I am trying to do my due deligence and hear if people have had success, esp try given the known side effects.


NP here. My child has ASD + Bipolar. SSRI's can trigger mania - which in my child triggers violence. It's really not OK - and we've seen a negative reaction to SSRI's within 48 hours. My child hasn't taken Lamictal, but I know children who do take it (they have mood disorders, but not ASD), and their parents are happy with it.

It sounds like you are doing your due diligence, and frankly, this forum has a limit to how helpful it can be on some things. Meds are one of those things - the fact is no one has children thinking "I'll give them tons of potentially side effect inducing meds for fun," and when parents do decide to try meds for a variety of mental health reasons (meds are NEVER criticized when its a physical health issue) other parents try to tell them that its wrong, they need second opinions, everything is SO DANGEROUS. There are risks, yes, but those must be weighed against the risks of not using the medication.

I'm going to assume that your OP doesn't have all the relevant information that your child's doctor has access to. That's perfectly fine - if your child needs medication, and this is the route your child's doctor is recommending, I think it's worth a shot. Keep an eye out for the side effects, keep an eye out for adverse reactions, watch carefully to see if it's actually helping. In my experience with my complicated kid, we usually saw a difference when a med was working within a week - I regret waiting longer than 3 weeks for improvements a few times. Make sure that everytime you start a new med there is a follow-up visit scheduled within a month - 2 weeks would be my personal preference.

It's hard parenting complicated kids, especially when you (like me!) don't have experience with it before doing it. You're doing a good job.
Anonymous
Post 03/11/2024 15:43     Subject: Re:Lamictal for asd
Anonymous wrote:
Anonymous wrote:OP here. Thank you for all the feedback.

I didn't want this to become a debate on the side effects of the drug. Was really looking feedback on the experience with a drug. We are well aware of them and had a lengthy discussion with the doctor. Our doctor also agreed the rash is very very rare and in his many years of prescribing the drug he has never seen it. BUT thats why you take a low dose to start and slowly increase. For many reasons he thought this would be a good drug for our child. And everything i have read is that many people have had lots os success.

Also, the comments to just get a second opinion our somewhat frustrating becuase its just not that easy! I wish there were tons of well qualified/expereinced pyschs who know complicated kids like mine. But there aren't and the few that there are have long waitlists. Believe me we've tried.

Again, didn't want this to turn into a debate. There are reasons we are considering this drug and I am trying to do my due deligence and hear if people have had success, esp try given the known side effects.


My daughter has ASD and Lamictal has helped her mood regulation. We tried SSRIs and they did not work--in fact, she had a bad reaction. Why are you so hell-bent on discouraging OP from using a medication with which you obviously have no experience?

Ok. Ask the doctor to provide the research studies that show it is “known” to help kids on the spectrum.

this is what I could find, and it showed no effectiveness: https://pubmed.ncbi.nlm.nih.gov/11450816/
Anonymous
Post 03/07/2024 13:55     Subject: Lamictal for asd
A psychiatrist suggested trileptal rather than lamictal out of caution for side effects, but they aren't the same drug. The trileptal didn't help stabilize DC and we had to wean off.
Anonymous
Post 03/07/2024 12:06     Subject: Re:Lamictal for asd
Anonymous wrote:OP here. Thank you for all the feedback.

I didn't want this to become a debate on the side effects of the drug. Was really looking feedback on the experience with a drug. We are well aware of them and had a lengthy discussion with the doctor. Our doctor also agreed the rash is very very rare and in his many years of prescribing the drug he has never seen it. BUT thats why you take a low dose to start and slowly increase. For many reasons he thought this would be a good drug for our child. And everything i have read is that many people have had lots os success.

Also, the comments to just get a second opinion our somewhat frustrating becuase its just not that easy! I wish there were tons of well qualified/expereinced pyschs who know complicated kids like mine. But there aren't and the few that there are have long waitlists. Believe me we've tried.

Again, didn't want this to turn into a debate. There are reasons we are considering this drug and I am trying to do my due deligence and hear if people have had success, esp try given the known side effects.


Ok. Ask the doctor to provide the research studies that show it is “known” to help kids on the spectrum.

this is what I could find, and it showed no effectiveness: https://pubmed.ncbi.nlm.nih.gov/11450816/
Anonymous
Post 03/07/2024 10:14     Subject: Lamictal for asd
I used to be on it for seizures. I lost weight (not an unhealthy amount) but also lost a ton of hair.
Anonymous
Post 03/07/2024 10:12     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:I take it for depression and less moodiness.

I will share with you something my psychiatrist told me. It is a drug that should be taken NAME BRAND ONLY. In my case this is very true.


That's so weird! I actually heard that generic is better, and I am doing great on it for bipolar 2 disorder. Of course name brand could be better, but I don't want to mess with a good thing.

Anyway, OP, I've been taking it for 10 years and I love it. Sometimes I struggle but my mood is ten times more stable than it used to be.


+1 I take it for the same reason and it helped enormously to keep me on even keel.
Anonymous
Post 03/07/2024 10:10     Subject: Re:Lamictal for asd
OP here. Thank you for all the feedback.

I didn't want this to become a debate on the side effects of the drug. Was really looking feedback on the experience with a drug. We are well aware of them and had a lengthy discussion with the doctor. Our doctor also agreed the rash is very very rare and in his many years of prescribing the drug he has never seen it. BUT thats why you take a low dose to start and slowly increase. For many reasons he thought this would be a good drug for our child. And everything i have read is that many people have had lots os success.

Also, the comments to just get a second opinion our somewhat frustrating becuase its just not that easy! I wish there were tons of well qualified/expereinced pyschs who know complicated kids like mine. But there aren't and the few that there are have long waitlists. Believe me we've tried.

Again, didn't want this to turn into a debate. There are reasons we are considering this drug and I am trying to do my due deligence and hear if people have had success, esp try given the known side effects.
Anonymous
Post 03/07/2024 09:38     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The doctor said there were studies showing it worked well with ASD kids. And his genetic testing shows he wouldn’t react well with an ssri (


that seems really questionable. lamictal has a list of side effects a mile long and the the genetic tests are unproven. 2nd opinion.


My ASD kid had really bad reactions to SSRIs and we used genetic testing to guide us. Following this advice could save you lots of heartache. Best to heed your doctor. Good for them for doing the genetic testing. My kid takes lamictal. Switched to it from Abilify. It’s a bit sedating. There’s a random rare rash side effect that’s supposed to be serious keep an eye out for that.


The bad reactions to Lamictal are much worse than the bad reactions to SSRIs. I’m glad you found a med that worked, but those genetic tests just are not reliable yet. To start with a riskier class of drugs based on the genetic test seems really questionable.





Realistically speaking, the worst thing that can happen with lamictal that doesn't happen with SSRIs is you get a bad rash that needs to be treated in the hospital and you stop taking it. It can be deadly but that's only if the rash gets insanely bad and you don't get treatment for it, and it almost always happens when you first start taking the medication so you'll know within 8 weeks if it's bad.

And it's definitely not always better to start out with SSRIs. I assume OP's child doesn't have bipolar disorder, but if someone with bipolar disorder takes SSRIs it can make their bipolar disorder worse. This happens quite a bit.

Of course this is so specific to the individual and it's really ahrd to find the right thing. But lamictal is perfect for me.


“Realistically speaking”?? No, Stevens-Johnson is very serious, it’s not “just a rash.” And there are other very serious side effects of Lamictal as well. It’s just objectively a more risky medication. OP should seek out a second opinion because it does not make sense to go straight to the riskier drug on the basis of extremely thin evidence (the genetic test).


Yes, realistically speaking, that is the worst that can happen. I never said it wasn't serious but it's manageable with prompt medical attention. Have you taken lamictal? When I started, my doctor told me over and over again to be on the lookout for rashes and immediately stop taking it and seek medical care if I got red spots. With this rash, first it presents as red spots, then after a couple of days to a several weeks it becomes a rash. If you stop taking lamictal after you get red spots or even after a mild rash, you are going to be totally fine.

When considering the rash, yes, lamictal is more risky. But I still wouldn't call it a "risky" medication. I am so glad I accepted the risk of the rash and started with lamictal instead of an SSRI. I, like 99.9% of individuals who take lamictal, have not had a rash from it and I never had to deal with any of the SSRI side effects (not relevant for children, but I've never had a reduction in libido, weight gain, increased medication tolerance necessitating a bump in dosage, or emotional blunting). I also went from experiencing suicidal ideation every day to never having suicidal thoughts, and that was pretty great too.

I think a second opinion is a great idea and it might very well be that an SSRI is better for OP's kid than lamictal, but a lot of people seriously overstate the risk of the lamictal rash.


the point remains that lamictal poses much more serious risks - it’s not even a question. of course it’s the right med for some people, but there’s no justification for trying it FIRST for irritability or depression in autism.
Anonymous
Post 03/07/2024 09:28     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The doctor said there were studies showing it worked well with ASD kids. And his genetic testing shows he wouldn’t react well with an ssri (


that seems really questionable. lamictal has a list of side effects a mile long and the the genetic tests are unproven. 2nd opinion.


My ASD kid had really bad reactions to SSRIs and we used genetic testing to guide us. Following this advice could save you lots of heartache. Best to heed your doctor. Good for them for doing the genetic testing. My kid takes lamictal. Switched to it from Abilify. It’s a bit sedating. There’s a random rare rash side effect that’s supposed to be serious keep an eye out for that.


The bad reactions to Lamictal are much worse than the bad reactions to SSRIs. I’m glad you found a med that worked, but those genetic tests just are not reliable yet. To start with a riskier class of drugs based on the genetic test seems really questionable.





Realistically speaking, the worst thing that can happen with lamictal that doesn't happen with SSRIs is you get a bad rash that needs to be treated in the hospital and you stop taking it. It can be deadly but that's only if the rash gets insanely bad and you don't get treatment for it, and it almost always happens when you first start taking the medication so you'll know within 8 weeks if it's bad.

And it's definitely not always better to start out with SSRIs. I assume OP's child doesn't have bipolar disorder, but if someone with bipolar disorder takes SSRIs it can make their bipolar disorder worse. This happens quite a bit.

Of course this is so specific to the individual and it's really ahrd to find the right thing. But lamictal is perfect for me.


“Realistically speaking”?? No, Stevens-Johnson is very serious, it’s not “just a rash.” And there are other very serious side effects of Lamictal as well. It’s just objectively a more risky medication. OP should seek out a second opinion because it does not make sense to go straight to the riskier drug on the basis of extremely thin evidence (the genetic test).


Yes, realistically speaking, that is the worst that can happen. I never said it wasn't serious but it's manageable with prompt medical attention. Have you taken lamictal? When I started, my doctor told me over and over again to be on the lookout for rashes and immediately stop taking it and seek medical care if I got red spots. With this rash, first it presents as red spots, then after a couple of days to a several weeks it becomes a rash. If you stop taking lamictal after you get red spots or even after a mild rash, you are going to be totally fine.

When considering the rash, yes, lamictal is more risky. But I still wouldn't call it a "risky" medication. I am so glad I accepted the risk of the rash and started with lamictal instead of an SSRI. I, like 99.9% of individuals who take lamictal, have not had a rash from it and I never had to deal with any of the SSRI side effects (not relevant for children, but I've never had a reduction in libido, weight gain, increased medication tolerance necessitating a bump in dosage, or emotional blunting). I also went from experiencing suicidal ideation every day to never having suicidal thoughts, and that was pretty great too.

I think a second opinion is a great idea and it might very well be that an SSRI is better for OP's kid than lamictal, but a lot of people seriously overstate the risk of the lamictal rash.
Anonymous
Post 03/07/2024 09:12     Subject: Lamictal for asd
Anonymous wrote:My kids are on this, along with buspirone and desvenlafaxine. Seems to help.


that’s a lot of medication. what’s it for?
Anonymous
Post 03/07/2024 09:11     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The doctor said there were studies showing it worked well with ASD kids. And his genetic testing shows he wouldn’t react well with an ssri (


that seems really questionable. lamictal has a list of side effects a mile long and the the genetic tests are unproven. 2nd opinion.


My ASD kid had really bad reactions to SSRIs and we used genetic testing to guide us. Following this advice could save you lots of heartache. Best to heed your doctor. Good for them for doing the genetic testing. My kid takes lamictal. Switched to it from Abilify. It’s a bit sedating. There’s a random rare rash side effect that’s supposed to be serious keep an eye out for that.


The bad reactions to Lamictal are much worse than the bad reactions to SSRIs. I’m glad you found a med that worked, but those genetic tests just are not reliable yet. To start with a riskier class of drugs based on the genetic test seems really questionable.





Realistically speaking, the worst thing that can happen with lamictal that doesn't happen with SSRIs is you get a bad rash that needs to be treated in the hospital and you stop taking it. It can be deadly but that's only if the rash gets insanely bad and you don't get treatment for it, and it almost always happens when you first start taking the medication so you'll know within 8 weeks if it's bad.

And it's definitely not always better to start out with SSRIs. I assume OP's child doesn't have bipolar disorder, but if someone with bipolar disorder takes SSRIs it can make their bipolar disorder worse. This happens quite a bit.

Of course this is so specific to the individual and it's really ahrd to find the right thing. But lamictal is perfect for me.


“Realistically speaking”?? No, Stevens-Johnson is very serious, it’s not “just a rash.” And there are other very serious side effects of Lamictal as well. It’s just objectively a more risky medication. OP should seek out a second opinion because it does not make sense to go straight to the riskier drug on the basis of extremely thin evidence (the genetic test).
Anonymous
Post 03/07/2024 09:08     Subject: Lamictal for asd
Anonymous wrote:Yes! DC has taken it for a few years, off-label. It has improved her mood regulation without any side effects. Full disclosure: I've been taking it for 10 years for PMDD.


Hadn"t heard about it used for PMDD.
Anonymous
Post 03/07/2024 08:16     Subject: Lamictal for asd
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:The doctor said there were studies showing it worked well with ASD kids. And his genetic testing shows he wouldn’t react well with an ssri (


that seems really questionable. lamictal has a list of side effects a mile long and the the genetic tests are unproven. 2nd opinion.


My ASD kid had really bad reactions to SSRIs and we used genetic testing to guide us. Following this advice could save you lots of heartache. Best to heed your doctor. Good for them for doing the genetic testing. My kid takes lamictal. Switched to it from Abilify. It’s a bit sedating. There’s a random rare rash side effect that’s supposed to be serious keep an eye out for that.


The bad reactions to Lamictal are much worse than the bad reactions to SSRIs. I’m glad you found a med that worked, but those genetic tests just are not reliable yet. To start with a riskier class of drugs based on the genetic test seems really questionable.





Realistically speaking, the worst thing that can happen with lamictal that doesn't happen with SSRIs is you get a bad rash that needs to be treated in the hospital and you stop taking it. It can be deadly but that's only if the rash gets insanely bad and you don't get treatment for it, and it almost always happens when you first start taking the medication so you'll know within 8 weeks if it's bad.

And it's definitely not always better to start out with SSRIs. I assume OP's child doesn't have bipolar disorder, but if someone with bipolar disorder takes SSRIs it can make their bipolar disorder worse. This happens quite a bit.

Of course this is so specific to the individual and it's really ahrd to find the right thing. But lamictal is perfect for me.