Med Trials - Tell me Your Experiences

[STARTwHello]

We’re on the med journey that I’m sure so many of you know well. My son is 7.5 ASD/PDA, originally also diagnosed ADHD with lots of anxiety. He struggles big time with emotional regulation, aggression, following routines and demands. He’s extremely verbal and social but has a hard time making and keeping friends. Impulsivity, elopement, aggression, it all impacts his daily life.

We follow a pretty set routine each day with fairly low demands. He goes to a private therapeutic school through his IEP where he gets OT, play therapy, speech etc. The school is extremely accommodating but he still struggles big time.

We work with a child psych for meds and did genesight but genesight really hasn’t been helpful. Most things came back in the green, but still haven’t worked for him.

He currently takes 1mg immediate release guanfacine and .5mg resperidone in the morning, 1.5 guanfacine at 4pm and 1mg resperidone at bedtime. I believe the guanfacine is not enough but before resperidone we tried increasing it and it makes him irritable/angry. The resperidone helps him talk through emotions more but higher doses don’t seem right. He’s gained a lot of weight and more seems to make him more sensative in a negative way.

We’ve tried stimulants and it increases anxiety and aggression. Sertraline and Fluoxetine made him reckless even at smaller doses. Abilify was horrible and made him fixate on buying things. We originally started on guanfacine immediate release because he couldn’t take a pill and it was compounded to a liquid. We’ve since tried the XR and it’s made him pretty loopy but I wonder if we’re not switching right because it’s a blood pressure med.

He is currently sleeping well at night and does “ok” at home but that’s with A LOT of accommodating on our part. I also believe certain high fat foods don’t work well with guanfacine (like peanut butter) so I’m constantly worrying about food too.

I know this is a lot. Has anyone seen luck with Straterra or Quelbree in combination with other meds? Wellbutrin is another one I’ve seen that we have not tried.

Please share your experiences. We just want him to be happy and feel like he can be successful without meltdowns and fight/flight.

[PepperElla]

Hi there. The medication journey is quite a doozy. My son is 9 and is ASD/PDA/ADHD and we started on medications when he was 5. He has been on Ritalin, Quillachew, Adderall, Cotempla, Guanfacine, Clonodine, and Jornay PM. Right now we are doing Guanfacine in the AM, Clonodine at bedtime to help with sleep, and Jornay PM at bedtime - this ADHD medicaiton works overnight so it is in his system in the morning. We've found this to be a pretty good mix. But we also know it can (and will) change as he grows. Jornay PM is a newish medication that has a savings card - it is $25/month if your insurance covers it and $75/month if insurance doesn't cover it.

We have been contemplating if an anti-anxiety medication might be beneficial for the PDA as he has a lot of school refusal and anxiety (but then we would want to take something out).

How low demand have you gone? How does he do at school? Any school refusal?

Just wondering if the demands at school lead him to be just "done" at home? And sometimes you may think you are low demand but there is more that can be dropped. It is such a balance.

[Mamamichl in reply to PepperElla]

My stepkid’s mom didn’t want ADHD meds initially (hey started at 14), but she was ok with anxiety meds at 11. I take both, and it really does help me to have the anxiety meds. I don’t snap at people as much. It’s easier to pause and breathe.

[STARTwHello in reply to PepperElla]

Thank you! Home is generally ok because we have such a set routine and he doesn’t get homework (which schoolwork refusal is part of one of the issues at school). School has a lot of accommodations in place though and go super slow on expectations, having him help develop how to accomplish something, 5 minutes of work, 5 minutes of something he chooses etc. Sensory/quiet time, lots of opportunities for crafts and projects which he loves. They do have some incentive based approaches to behavior though which is mixed. It’s motivating but also tough when he gets dysregulated. His current school is the first school in years though he wants to go to, even after really hard days there. So we see that as a positive, and there are some good things! So not really school refusal but more work refusal/escalation in certain situations.

At home we don’t do unlimited screens but he has a tablet he uses before and after school during a set time and we don’t ever take that time away. It’s part of his routine. He needs the chill time. With meds he’s asleep usually by 7:30/8 and falls asleep on the couch to Wild Kratts.

On non school days we follow the same morning and afternoon routine as school days but instead of school we are doing a preferred activity out of the house as a family usually 8:30-11:30a. Come home for lunch with screens and chill time until 2p and then out again from 2-4ish for a preferred activity as a family. We might fish, go bowling, go to the pool etc. All things he likes and his sister can do too. Occasionally we try going to a restaurant or to his grandparents on a weekend evening but plan it in ways he can handle and is open to. His grandparents have also come along way in knowing how to approach things so he really looks forward to going there too which helps.

We’ve tried a lot of different stimulants with sort of the same end result of very increased anxiety, agitation and often aggression so we think stimulants are just not for him. Anxiety meds make it worse too with lots of recklessness and more purposeful behavior, even at low doses.

If we could get school to an overall good place I feel like he would be in such a good place. I just feel like there’s a piece missing with meds.

[Onthemove1971]

I have written about our medication journey in the past. Currently our son it taking Wellbutrin in the am with Guanfcine in the am also. This has worked well for him.

We moved away from stimulants due to the shortage.

When our son was younger I asked him if he remembered all the medication trials and he said nope..

The challange is getting everything dialed in so he can function to the best of his ability.

Good luck.

[STARTwHello in reply to Onthemove1971]

Thank you! I appreciate your comments on whether he remembers. Our sons memory and ability to recall things is one of his strengths so I’m worried that might not be the case for him but I agree, we just want to get to that place so he can function at his best! Thank you!!

[Onthemove1971 in reply to STARTwHello]

Yes ditto.. our son remembers everything. But once he started to be stable and function daily he did not remember the side effects he had to deal with.

It is life changing ( not perfect!) when everything works great.

Best to you in your journey!

[itsaboutthejourney]

My son (ADHD, depression), now 15, has tried just about every stimulant, Guanfacine and Strattera with mixed results since his diagnosis at age 6. Stimulants helped a little, but killed his appetite and contributed to his worsening depression and anxiety. These also caused daytime sleepiness to the point of him falling asleep in class and having little energy for homework. Guanfacine caused body aches that made him not want to get out of bed and Strattera left him emotionally numb and untethered to any social norms or rules. Prozac has been helpful in countering his depression. About 6 months ago, we tried Qelbree and it has been a game changer. It provides mild attentional support for school, but his appetite, mood, emotional regulation, and motivation to do non-preferred tasks have improved considerably--and less side effects. He is still sleepy during the day, but less so than he was with stimulants, and if we miss a pill he gets an excruciating migraine. We may try a stronger dose when school starts up this fall. Hope this is helpful.

[anirush]

My 17 year old grandson is on almost exactly the same medicine as your son. But he also is on Straterra. He had lots of anger issues when he was young and risperdone is the only thing that helped with the anger. The other meds were for anxiety and ADHD.

About a year ago we added Sertraline and were able to cut way back on the risperdone. He is doing wonderfully now.The most stable he has been in years.

We have tried so many combinations over the years. You just don't know what's going to work until you try it.

[STARTwHello in reply to anirush]

That’s amazing! Sertraline and Fluoxetine we had some pretty terrible side effects. So prior to that he was just on Resperidone and Straterra? I’ve wondered if we need to try a Quelbree or Straterra with or instead of Guanfacine because higher doses of Guanfacine make make him more agitated but I also don’t think the Guanfacine is enough right now for the hyperactivity. I feel like Guanfacine is impacted by higher fat foods he eats too and I don’t like having to constantly monitor that. I get so nervous reading side effects but I know it’s different with everyone.

[anirush]

And Guanfacine. Everyone's reactions are different.

[STARTwHello in reply to anirush]

Ok thanks! Yes, so true! Do you know if he was taking Guanfacine extended release at night and Straterra in the morning? I ask because we’ve tried to switch to extended release (he’s been on immediate release guanfacine) but it just never goes well. Because it’s a blood pressure med, I think we might need to come off of the immediate release completely before trying the extended release. Then again I question whether it’s right for him all together because I saw how agitated he got when we increased his dose. So many things to consider! Thank you so much for your feedback!

[anirush]

We've had that problem before, if we've tried to increase the dose it makes things worse so we go back to the previous dose. Even though he is 6 feet tall, he is on Strattera 25mg. If we increased the dose he got angrier, if we decreased it he got where he could not sit still.

He was on risperdone 3 times a day at one point. Now just once. All his meds are taken in the morning. Guanfacine is ER.

He sometimes takes Melatonin 5mg at bedtime but mostly sleeps without it.

[adoptivemom]

I'm on a similar journey with my 8 yo son. We've tried a lot of stimulants, and it's the rebound that was a deal breaker. I don't think there was much of an improvement at school, but when they wear off he's a mess. Screaming and crying for hours and self harming. So that's a no from me. We just tried Strattera. I was hoping it would be helpful, but we were noticing an escalation in his irritation and aggression, getting in trouble at school more and more, as we tried to wait for the "therapeutic level" to be reached (6 weeks) to see some benefit. He started really fighting the SpEd teachers when pulling him from class to do work, cursing and yelling, lying mostly in the afternoons around 1:00. I mentioned it to the Dr and they encouraged me to give it a few more weeks. I did and regret it. He kept getting worse and was finally saying he wanted to kill himself, which was the end for me. So we took him off it, and that's been its own mess. He was up all night last night (takes aririziprole / Abilify and clonidine at night and some melatonin so he sleeps well typically) and it was awful. I am hoping it was a one off and party of the detox from the Strattera.

All that to say, I am so frustrated, exhausted, overwhelmed with the medication roller coaster. I read on here and am hopeful that there is some combination that will help. Earlier this school year we added Fluoxetine and it helped a lot. He was calmer and happier than he had been before, and I realized his anxiety and depression were more critical than his ADHD. The school pushed us to find a way to improve his focus and academics - he's behind and not cooperative about catching up. So that is what launched the last few months of trial and error with meds. At this point I am taking a break and leaving the other meds alone and I'm going to have the genetic testing done. I am not sure from where, there are a few options. But I am hoping the $350 is worth it to find out what might be more compatible with him and if there's a nutritional component I need to address.

I just wanted to share that you're not alone and we feel your pain!! I hope you have found a combination that will help!!