ASD/ADHD & anxiety - Lamictal or Lithium

[Anonymous]

DD has long history of emotional dysregulation and mild anxiety. She was on Zoloft for many years and then Effexor, both caused her to lack motivation, emotional blunting and gain weight.

She is too sensitive to ADHD stimulants. We tried 9 different stimulants and all of them increased the emotional dysregulation and weren't effective. We also tried non-stimulants.

New psychiatric nurse practitioner is suggesting either Lamictal or low-dose Lithium. He doesn't really have a recommendation one over the other, other than Lithium has less chance of side effects and Lamictal sometimes stops working after a time.

If you have experience with one of the other, or have any other research you've done to share, I'd really appreciate it!

[Anonymous]

We did both. Lithium requires periodic blood tests so there is an inconvenience. Lithium was viewed as a last option after everything else failed - and by that point, there had been 13 different medication cocktails and multiple hospitalizations in a 13 month period. My observation (because I can't really say how my son felt) was that Lamictal was a really good medication. It worked quickly and did what it was supposed to do. The only worrisome side effect is the potential for a rash that can have devastating consequences so you have to be really aware during the first six weeks, which is tough with a child with mental health issues.

Due to many hospitalizations, IOPs and PHPs during a relatively short period of time, we had many providers reviewing medications. It was only the last one that prescribed the Lithium - everyone else disagreed and as soon as he was transferred to a long term inpatient program, Lithium was immediately discontinued. Based on my experiences of providers avoiding Lithium at all costs and Lamictal working so effectively, if I were faced with the choice, I'd choose Lamictal.

If you are thinking about Lithium, have you tried Abilify? It is often referred to as Lithium-lite. That didn't work for my son - the weight gain was just awful, which sounds like a deal breaker for you, and it just wasn't effective for anything but a short period of time.

FWIW, what is working for my son and has been for years is Zyprexa. It is combined with a stimulant and a sleep medication. The key for him was getting the right combination. Stimulants were a disaster until the right combination was found, but nothing else worked for the ADHD issues. And, there was no miracle stand alone drug.

[Anonymous]

Anonymous wrote:We did both. Lithium requires periodic blood tests so there is an inconvenience. Lithium was viewed as a last option after everything else failed - and by that point, there had been 13 different medication cocktails and multiple hospitalizations in a 13 month period. My observation (because I can't really say how my son felt) was that Lamictal was a really good medication. It worked quickly and did what it was supposed to do. The only worrisome side effect is the potential for a rash that can have devastating consequences so you have to be really aware during the first six weeks, which is tough with a child with mental health issues.

Due to many hospitalizations, IOPs and PHPs during a relatively short period of time, we had many providers reviewing medications. It was only the last one that prescribed the Lithium - everyone else disagreed and as soon as he was transferred to a long term inpatient program, Lithium was immediately discontinued. Based on my experiences of providers avoiding Lithium at all costs and Lamictal working so effectively, if I were faced with the choice, I'd choose Lamictal.

If you are thinking about Lithium, have you tried Abilify? It is often referred to as Lithium-lite. That didn't work for my son - the weight gain was just awful, which sounds like a deal breaker for you, and it just wasn't effective for anything but a short period of time.

FWIW, what is working for my son and has been for years is Zyprexa. It is combined with a stimulant and a sleep medication. The key for him was getting the right combination. Stimulants were a disaster until the right combination was found, but nothing else worked for the ADHD issues. And, there was no miracle stand alone drug.

I think he’s talking about a very low (non-therapeutic) dose of lithium due to new research on this approach. I’m really afraid about the Lamictal rash, but it’s been suggested now for the 3rd time over the years. She has no history of hospitalizations or suicidality, but she periodically gets extremely dysregulated and it usually starts with either anxiety (and someone’s reaction to her anxiety) or rejection and she just flies off the handle.

[Anonymous]

PP here. The thing about the rash is that it's a 6 week issue, not a long term one and it's rare - at least that's what we were always told. If you can monitor, whether it be by conversation or inspection (mine would never have allowed this), and it happens, you have time to turn it around. I'd talk to your provider more about this or research more.

I know about the low dose lithium because that was also what we discussed, but by that time, we were lost causes and out of options. So, I didn't spend a lot of time thinking about it. And, like I said, it was for a really short duration.

It's a tough decision. I remember being really conflicted about the Lamictal but didn't regret it.

[Anonymous]

Anonymous wrote:PP here. The thing about the rash is that it's a 6 week issue, not a long term one and it's rare - at least that's what we were always told. If you can monitor, whether it be by conversation or inspection (mine would never have allowed this), and it happens, you have time to turn it around. I'd talk to your provider more about this or research more.

I know about the low dose lithium because that was also what we discussed, but by that time, we were lost causes and out of options. So, I didn't spend a lot of time thinking about it. And, like I said, it was for a really short duration.

It's a tough decision. I remember being really conflicted about the Lamictal but didn't regret it.

Thanks so much for sharing all of this info. I’m really conflicted. She’s been on ZERO meds for a year and done really well, and will go long stretches without any issues. But when the dysregulation hits, it’s pretty extreme, and lately there’s been some anxiety that’s pretty unreasonable (ie, she’s a singer and refuses to talk for days at a time due to worry about damage to her vocal chords). During these times I think to myself “how on earth is this kid completely unmedicated” but we’ve had such hard experiences with meds I’m just afraid.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We did both. Lithium requires periodic blood tests so there is an inconvenience. Lithium was viewed as a last option after everything else failed - and by that point, there had been 13 different medication cocktails and multiple hospitalizations in a 13 month period. My observation (because I can't really say how my son felt) was that Lamictal was a really good medication. It worked quickly and did what it was supposed to do. The only worrisome side effect is the potential for a rash that can have devastating consequences so you have to be really aware during the first six weeks, which is tough with a child with mental health issues.

Due to many hospitalizations, IOPs and PHPs during a relatively short period of time, we had many providers reviewing medications. It was only the last one that prescribed the Lithium - everyone else disagreed and as soon as he was transferred to a long term inpatient program, Lithium was immediately discontinued. Based on my experiences of providers avoiding Lithium at all costs and Lamictal working so effectively, if I were faced with the choice, I'd choose Lamictal.

If you are thinking about Lithium, have you tried Abilify? It is often referred to as Lithium-lite. That didn't work for my son - the weight gain was just awful, which sounds like a deal breaker for you, and it just wasn't effective for anything but a short period of time.

FWIW, what is working for my son and has been for years is Zyprexa. It is combined with a stimulant and a sleep medication. The key for him was getting the right combination. Stimulants were a disaster until the right combination was found, but nothing else worked for the ADHD issues. And, there was no miracle stand alone drug.

I think he’s talking about a very low (non-therapeutic) dose of lithium due to new research on this approach. I’m really afraid about the Lamictal rash, but it’s been suggested now for the 3rd time over the years. She has no history of hospitalizations or suicidality, but she periodically gets extremely dysregulated and it usually starts with either anxiety (and someone’s reaction to her anxiety) or rejection and she just flies off the handle.

There is some research on low doses of nutritional lithium - much lower stakes than the amounts used to treat bipolar.

[Anonymous]

Try a carnivore diet.

[Anonymous]

Anonymous wrote:Try a carnivore diet.

For extreme emotional dysregulation?? Interestingly she has sensory issues and eats only meat, potatoes, cheese and pasta.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Try a carnivore diet.

For extreme emotional dysregulation?? Interestingly she has sensory issues and eats only meat, potatoes, cheese and pasta.

Lose the potatoes, cheese, and pasta.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Try a carnivore diet.

For extreme emotional dysregulation?? Interestingly she has sensory issues and eats only meat, potatoes, cheese and pasta.

Lose the potatoes, cheese, and pasta.

So you’re saying that my teenage daughter, who has a very limited diet to begin with, should eat ONLY meat? Because she periodically flies off the handle?

[Anonymous]

Is it possible OCD is going on? I can't remember what the name of the specialized therapy is for OCD, but it's supposed to be effective. It sounds like you don't love your options for medication at this point having tried so many. I'm sorry you guys are going through this.

[Anonymous]

Anonymous wrote:Is it possible OCD is going on? I can't remember what the name of the specialized therapy is for OCD, but it's supposed to be effective. It sounds like you don't love your options for medication at this point having tried so many. I'm sorry you guys are going through this.

ERP?

[Anonymous]

No way is Lithium a good option. That is a last resort option. Lamictal or Latuda maybe. My DD was on Lamictal. Started at 25mg and slowly increased to 150mg and honestly it didn’t really help her that much. But positives were no rash and no side effects.

We did a lot of SSRI and stimulants first too. SSRI were not good with side effects. Stimulants didn’t work so great and harsh comedowns.

We started year round birth control (no placebo week) for PMDD. This was a huge game changer as it regulated hormones all month, which helped her tremendously. Then we cleared all her meds and started Clonidine and it was a game changer. No side effects expect some drowsiness in the first week.

This is her current meds:

AM
Wellbutrin 150mg
Clonidine 0.05mg (half a pill)

PM (after activities, so usually 8pm)
Clonidine 0.1mg
BCP

Supplements that make a difference:
Multi vit pill with high dose Vit B’s and D, Zinc and Iron
Barleans high potency fish oil
Magnesium threonate/glycinate

Now that she is much calmer, we will be starting a stimulant option in Aug to get ready for school. The Clonidine works on impulses and emotions. Now we want the stimulant to work on focus and stamina in school. Looking to start with Focalin.

[Anonymous]

Psychiatrist here with some late night meandering thoughts. Both of these medications are mood stabilizers. I don’t have much of a comment on whether or not your daughter should be on that kind of medication at all, but that is what they are for. Lithium, used as an adjunct, has been shown to decrease aggressive and hyperactive behaviors in young adults with ADHD and in kids with conduct disorders, but I can’t think of any reason I would just use low dose Lithium on its own in a child.

As far as side effects and tolerability, Lamictal is the less dangerous and better tolerated medication by far. The risk of Steven Johnson’s syndrome is more or less zero if you follow the titration schedule and discontinue at the sign of a rash. The only real risk is when people stop taking it for a few weeks and then just start back at a high dose.
Lithium, on the other hand, has a lot of potential side effects. First of all, it can be fatal in an intentional overdose. It doesn’t sound like your daughter is suicidal, but it’s being used to treat emotional dysregulation and impulsivity in an adolescent, so it would be on my radar. Secondly, it causes a known birth defect. This probably isn’t a concern at 13, but would be something I would be thinking about if she was going to be on it long term. Third, it generally has a low therapeutic window before you get to Lithium toxicity. If you are using a low dose, that’s less of a concern, but it’s always something I talk to my patients about before we start it. It sits right below sodium on the periodic table, and your body will retain it like sodium if you get dehydrated. When people are on a therapeutic dose, it’s a risk. Fourth, Lithium can be hard on your kidneys. That’s part of the reason for the lab draws. She shouldn’t take ibuprofen while she’s on it. Labs should be monitored, and she should stop it if there are any kidney problems. Fifth, Lithium has the potential for a lot of other, less serious, side effects like fatigue, dizziness, GI upset, difficulty with concentration.

All that being said, I use a lot more Lithium than lamictal. For the people it works for, it really works. At a therapeutic dose it decreases suicidal thoughts, prevents manic episodes, and decreases aggression.

I would be really hesitant to start it in a 13 year old girl though for all of the reasons I outlined above, and it makes me nervous that your NP said there wasn’t a potential for side effects.

[Anonymous]

Anonymous wrote:No way is Lithium a good option. That is a last resort option. Lamictal or Latuda maybe. My DD was on Lamictal. Started at 25mg and slowly increased to 150mg and honestly it didn’t really help her that much. But positives were no rash and no side effects.

We did a lot of SSRI and stimulants first too. SSRI were not good with side effects. Stimulants didn’t work so great and harsh comedowns.

We started year round birth control (no placebo week) for PMDD. This was a huge game changer as it regulated hormones all month, which helped her tremendously. Then we cleared all her meds and started Clonidine and it was a game changer. No side effects expect some drowsiness in the first week.

This is her current meds:

AM
Wellbutrin 150mg
Clonidine 0.05mg (half a pill)

PM (after activities, so usually 8pm)
Clonidine 0.1mg
BCP

Supplements that make a difference:
Multi vit pill with high dose Vit B’s and D, Zinc and Iron
Barleans high potency fish oil
Magnesium threonate/glycinate

Now that she is much calmer, we will be starting a stimulant option in Aug to get ready for school. The Clonidine works on impulses and emotions. Now we want the stimulant to work on focus and stamina in school. Looking to start with Focalin.

Op here - this is very helpful. We are also starting BC. Her dysregulation gets much, much worse just before her cycle and a little worse mid-cycle. She also has slightly elevated Testosterone.

I suggested Clonidine to the NP and he said this is an option but wasn’t sure it would be very helpful and may make her sleepy.