Rough Patch While Finding Best Medication Fit - when to switch?

[missbonafide]

Hi Everyone-

I always love to see the helpful responses posted here when many of us are in the midst of uneasiness with our kiddos diagnoses. If you read to the bottom bless you!!

Diagnosis: ADHD + ASD 1

My 6 year old son who is now in 1st grade started Guanfacine ER (Intuniv) in March 2022. Took a while but by May the school and we at home saw improvement in his impulsivity. Summer came and went and his impulsivity was at bay during summer however we still dealt with a lot of opposition and irritability at times. And since August he had not slept through the night in his room...he would go down ok but always woke up 2-3 hours after saying he was scared or nervous and then he started a habit of coming into our bed...if we were asleep he would sneak in and we wouldn't even notice.... but now we are really working on helping him relearn to sleep in his bedroom which he shares w. his 2 year old brother--we have a bunk bed. Oldest on top and youngest on bottom....I kept wondering if perhaps his wakeups were a result of guanfacine no longer working since many parents here and on other forums shared that their kids experienced the same. I gave it more time... he also started to sleep on bottom bunk w his baby bro b/c he was nervous being on top bunk. It's been a lot to manage..and the 2 year old is also adjusting to the room so it's been draining....

1st grade started out ok the first month but by 2nd month in October the incidents started where he was getting aggressive with his para and the teacher and having some meltdowns. Mainly when being asked to do everyday things or during transitions or when a boundary was placed on him. I attribute the irritability to his broken sleep. But they also shared he was very disengaged in the classroom and was not completing his work. Once this went on for a month my husband and I started the process of finding a child psychiatrist to consider stimulants...we had only been working with pediatric neurologist prior to now.

Since the weekend he's been trying out methylphenidate IR (2.5mg chewable) for the morning (doc said this is a generic form of Focalin?). And b/c the sleep wakeups continued she switched Intuniv for Clonidine (total dose 0.1mg - half right after school and half 1 hour before bed)

(FYI- 2 weeks ago he had tried out low dose adderall IR but we noticed he had a lot of rage and even said some concerning things to his para so we stopped it immediately - and now we are trying methylphenidate)

So the last 2 days at school on this methylphenidate chewable the teacher and para noticed that he was much happier and in the morning did well participating in the classroom activities however they noticed he was very revved up and needed a lot of input and couldn't stop moving. Yesterday they managed it ok by giving him walking breaks to use up the energy. But today was stronger than yesterday. But also overnight (mon to tues) he went to sleep fine but woke up around 2am...we put him back down in his bed by 230am but he woke up again around 330am and actually never went back down which he usually doesn't stay awake that long ...I thought by the time it was time to get dressed for school he was going to say he was tired or be cranky but he was the opposite -- he was super wound up and told me he had a lot of energy and was very happy... we gave him the 2.5mg chewable stimulant and to school, he went.

I shared all this w the psychiatrist and she said to continue through end of the week to see if it settles down...but I'm a bit concerned if he's so wound up it can be unsafe....

Does anyone here have experience with methylphenidate chewable? This is a very low dose though. However, I'm thinking maybe the clonidine still needs to kick in or it's not enough to combat the impulsiveness through the next day...

We are going to consult another child psychiatrist on Friday and share how he's been and see if he agrees with the current regimen or thinks it's not right thing....we had been waiting over a month for the child psychiatrist that we'll see on Friday but b/c we were concerned we started with our back up person bc she was available in late November...I hear sometimes it's good to get 2nd opinions.

I know trial and error is common w this but it's very hard to see your child not feel in control

Also since he had been on guanfacine since March of this year - even on his very active days it was nothing like what we've seen the last 2 weeks as we try out different medications :/

Thanks in advance!

[eva2022]

Wow-just wanted to say that I respect all that you are doing to help your son, especially with another small child! It is so draining. I don’t have any advice-just hoping that the medicines start working to ease transitions and school time soon.

[missbonafide in reply to eva2022]

Aww thank you so much!!! Yeah it's been very rough with the younger one...my oldest starting having a hard time at preschool when his brother was a newborn since I had a pandemic baby...so the majority of my youngest's life my husband and I have been very stressed and overwhelmed with how to help the oldest...definitely some mom guilt there but making the best of it!!!

[SunshineF]

Hi just seeing your post. Did you end up making any additional changes since you posted this? We’re in a similar roller coaster with our 4.5 yr old. We just started with meds a few months ago - low dose guanfacine and now 2.5mg adderral on top— and our sons sleep has been disrupted. He’s been waking up between2-4 am and wants to start his day. We have no idea if it’s the newly add adderral - even being such a low dose — or the fact that he recently started using the bathroom on his own at night. His behavior hasn’t been very good either. Some good days and then some really bad days. But if that because the meds aren’t right for him or bc his sleep is messed up? Soo many variables! Anyway I’m writing you because although our experience isn’t identical it’s still similar and I’m discouraged. We’re also working with a dev. Ped not a psychiatrist which I wonder if we need to find a psychiatrist instead.

Hope you found some answers! If you did please share! Thank you <3