Psychiatrist who specializes in getting kids off meds

[Anonymous]

I have an autistic 13 yo who is in waaayyy too many rx - including antipsychotics, SSRIs, and stimulants. Whenever we try to reduce the meds, the child gets suicidal, so I will allow that they need some of them, but likely not all of what they’re on. And the side effects are substantial, including marked fatigue and incredible weight gain. How to go about untangling all the meds? And do it safely? And reduce side effects?

Has anyone done this? Did you have to put the kid in an inpatient program for their safety while you did so?

I’d love to hear from someone that we don’t have to keep it all up forever. If someone told me that there was a way out - even if it’s years from now, I’d be so relieved.

After 4 years on a med journey I don’t know anymore wha tia my child’s disability and what’s a side effect from a medication.

[Anonymous]

Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

[Anonymous]

Anonymous wrote:Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

Our skilled psychiatrist is prescribing and it all happened after an unusually bad reaction to a bad the first few SSRIs we tried. Our child became overstimulated (which is apparently rare and potentially indicative of underlying mental health struggles like bipolar that may manifest later) and was in a constant state of fight or flight. It was scary. I didn’t want to do the mood stabilizers but we had no other choice. Then we were able to find an SSRI that works but we can’t go off the mood stabilizers because psychiatrist is afraid they’ll get overstimulated again. We tried to switch from Abilify to lamotrigine but DC got suicidal when we reduced Abilify. So here we are on both of those mood stabilizers as well as an SSRI and a stimulant. It’s too much. I hate it. They’re not suicidal, but they’ve gained so much weight and they have no energy and their blood sugar is elevated. I don’t know how to get out of this situation. Obviously I don’t want them to be suicidal, but neither do I want them to be obese (not exaggerating, they crossed that threshold a while back) and struggling to make it through a school day because of fatigue. There are no good choices. Continuing as we are will wreck their physical health. Changing meds will make them suicidal. We are very very stuck.

[Anonymous]

Try using the search term "deprescribing". It means to get off something in a planned and monitored way, sometimes by gradually tapering if that's what's needed.

[Anonymous]

Wishing you luck with this OP. Seems like a worthy goal but one that will be hard to accomplish.

[Anonymous]

I used Sheppard Pratt. My kid was unpredictable when we did major med changes so a safe environment was critical. It was inpatient for about 6 weeks before they got his meds stabilized.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

Our skilled psychiatrist is prescribing and it all happened after an unusually bad reaction to a bad the first few SSRIs we tried. Our child became overstimulated (which is apparently rare and potentially indicative of underlying mental health struggles like bipolar that may manifest later) and was in a constant state of fight or flight. It was scary. I didn’t want to do the mood stabilizers but we had no other choice. Then we were able to find an SSRI that works but we can’t go off the mood stabilizers because psychiatrist is afraid they’ll get overstimulated again. We tried to switch from Abilify to lamotrigine but DC got suicidal when we reduced Abilify. So here we are on both of those mood stabilizers as well as an SSRI and a stimulant. It’s too much. I hate it. They’re not suicidal, but they’ve gained so much weight and they have no energy and their blood sugar is elevated. I don’t know how to get out of this situation. Obviously I don’t want them to be suicidal, but neither do I want them to be obese (not exaggerating, they crossed that threshold a while back) and struggling to make it through a school day because of fatigue. There are no good choices. Continuing as we are will wreck their physical health. Changing meds will make them suicidal. We are very very stuck.

Is overactivation uncommon? When we first tried SSRIs, we had the same experience. No one was concerned that it was a sign of anything more serious (or suggested it was unusual). We used a SNRI for several years, then post puberty successfully transitioned to a SSRI.

If you added the lamotrogine in order to go off the abilify but ended up not going off the abilify, weaning off the lamotrogine seems like it would be a good first step.

When abilify caused too much weight gain/high cholesterol, we successfully transitioned to Latuda, then weaned off the abilify. The switch took about a month.

[Anonymous]

What about a GLP-1? That is not to say not to change the meds, but it would treat the weight gain right away.

[Anonymous]

Our kid wasn't on as many as you described but we tried 9 different ADHD meds all of which caused varying degrees of side effects, and several different SSRI's, mood stablizers, and a SNRI. I, too, felt that I couldn't tell what was the meds and what was the ADHD, ASD, depression, etc. 1 year ago she was 70 pounds overweight, ragefull, and tired and unmotivated all of the time. No psychiatrist was ever supportive of de-prescribing, and the one we saw the longest said she would need to be hospitalized to try a med wash. A year ago, we took her to a psychiatric nurse practiioner. We stopped the ADHD meds first, and then he gave us a very long and low taper off of the SNRI she was on (Effexor). She had zero withdrawal effects and is definitely better off of the meds. We still have attention issues (the meds were ineffective for that), and some periods of dysregulation, but I believe she is better off of the meds than off of them. She smiles and has her personality back. I sometimes think we should try again because she has a lot of anxiety, but she is adamant that she is done with meds and side effects. I agree with PP who said to find someone who is experienced with deprescribing.

[Anonymous]

I used to work inpatient pediatric psych and this was a common reason for admission. Typically the team would taper them off of everything to get out of the cascade. Then do a baseline assessment for that point in time and current developmental stage, then treat the most problematic symptoms / condition. Kids often got worse during the tapering but then stabilized enough once off all the meds to get a good baseline assessment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

Our skilled psychiatrist is prescribing and it all happened after an unusually bad reaction to a bad the first few SSRIs we tried. Our child became overstimulated (which is apparently rare and potentially indicative of underlying mental health struggles like bipolar that may manifest later) and was in a constant state of fight or flight. It was scary. I didn’t want to do the mood stabilizers but we had no other choice. Then we were able to find an SSRI that works but we can’t go off the mood stabilizers because psychiatrist is afraid they’ll get overstimulated again. We tried to switch from Abilify to lamotrigine but DC got suicidal when we reduced Abilify. So here we are on both of those mood stabilizers as well as an SSRI and a stimulant. It’s too much. I hate it. They’re not suicidal, but they’ve gained so much weight and they have no energy and their blood sugar is elevated. I don’t know how to get out of this situation. Obviously I don’t want them to be suicidal, but neither do I want them to be obese (not exaggerating, they crossed that threshold a while back) and struggling to make it through a school day because of fatigue. There are no good choices. Continuing as we are will wreck their physical health. Changing meds will make them suicidal. We are very very stuck.

Everybody is different. As an adult I took my very first SSRI, a sample pack of Lexapro from my PCP. I was anxious and depressed about work.
My reaction was to flip into that was then called Bipolar III. Manic, the knives in the kitchen were calling me to cut myself...awful. PCP sent me to someone I otherwise don't don't recommend, but she put me on Lithium. It worked quickly. I stayed on forca couple of years, then disliked it so much (dry skin, hair thinning) another doc tapered me off. Been off it for 20 years. No problems.
I don't know if kids can take lithium. But I didn't gain much weight in it. You have to keep hydrated and eat salt. Good luck, OP. ♥️

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

Our skilled psychiatrist is prescribing and it all happened after an unusually bad reaction to a bad the first few SSRIs we tried. Our child became overstimulated (which is apparently rare and potentially indicative of underlying mental health struggles like bipolar that may manifest later) and was in a constant state of fight or flight. It was scary. I didn’t want to do the mood stabilizers but we had no other choice. Then we were able to find an SSRI that works but we can’t go off the mood stabilizers because psychiatrist is afraid they’ll get overstimulated again. We tried to switch from Abilify to lamotrigine but DC got suicidal when we reduced Abilify. So here we are on both of those mood stabilizers as well as an SSRI and a stimulant. It’s too much. I hate it. They’re not suicidal, but they’ve gained so much weight and they have no energy and their blood sugar is elevated. I don’t know how to get out of this situation. Obviously I don’t want them to be suicidal, but neither do I want them to be obese (not exaggerating, they crossed that threshold a while back) and struggling to make it through a school day because of fatigue. There are no good choices. Continuing as we are will wreck their physical health. Changing meds will make them suicidal. We are very very stuck.

Is overactivation uncommon? When we first tried SSRIs, we had the same experience. No one was concerned that it was a sign of anything more serious (or suggested it was unusual). We used a SNRI for several years, then post puberty successfully transitioned to a SSRI.

If you added the lamotrogine in order to go off the abilify but ended up not going off the abilify, weaning off the lamotrogine seems like it would be a good first step.

When abilify caused too much weight gain/high cholesterol, we successfully transitioned to Latuda, then weaned off the abilify. The switch took about a month.

Yes. Latuda. That’s what I want to do. I’m OP. I feel like I need to push for this with the doc again. We have the high cholesterol too.

[Anonymous]

Anonymous wrote:I used to work inpatient pediatric psych and this was a common reason for admission. Typically the team would taper them off of everything to get out of the cascade. Then do a baseline assessment for that point in time and current developmental stage, then treat the most problematic symptoms / condition. Kids often got worse during the tapering but then stabilized enough once off all the meds to get a good baseline assessment.

This is very interesting. OP here. I would think for my child that going into an inpatient environment would be very traumatizing. Do they ever do this within a PHP? Were the kids in the inpatient traumatized to be there?

[Anonymous]

Anonymous wrote:What about a GLP-1? That is not to say not to change the meds, but it would treat the weight gain right away.

OP here. I discussed with pediatrician. She said absolutely not.

[Anonymous]

Anonymous wrote:Multiple antipsychotics, multiple SSRIs, and multiple stimulants? That's way too much and very unusual, although one from each category isn't unusual at all.

Who is prescribing all these meds?

We accidentally got to start over again when DC went to a week long camp where she was expected to self administer, and she forgot. We were very lucky that nothing bad happened. We added one med back at a time, beginning with abilify because we needed something for mood urgently and it's faster than an SSRI. She's now on one of each of the above categories and doing great.

Unferinately it’s not uncommon. My son is on an SSRI, clonidine and a low dose stimulant. There is a med creep and I’m
Hopeful we won’t need all of these forever but we were in a bad place before meds (things are still challenging) and it’s very unnerving to imagine what our lives would be like if he was not medicated.