im torn on what medicine to try

[Alt49]

6.5 year old has been on short acting methylin 2x per day (7.5 mg each) and guanfacine 2x per day (.5 mg each). This combo has been working great but the evening chaos, low appetite and staying up late has crept back up over the last few weeks. Met with the psychiatrist today and she gave me 3 options and I’m torn which on to try. Any thoughts?

-add a booster dose of methylin around 4 (2.5 or 5mg). My pros are that we did this a couple times recently and it worked well. My cons are the appetite suppression and sleep issues and the 3x per day medicine administration which can be tough when at camps etc

-add 1mg of guanfacine. My pros: when we first introduced the guanfacine, his appetite and sleep issues improved a lot and his behavior much smoother after stimulant medicine wore off

-try to switch to extended release concerta. Pros: 1x per day administration that could work for 12 hours so a smoother day. Cons: unknown if it will work well and we know the short acting methylin will.

None of this is permanent so can always change. I’m struggling to decide if worth trying something new in hopes it can be better or stick w what’s working but tweak it.

update: we tried the 18mg extended release concerta (generic) today and his school camp report was not good - some of her language- impulsive, needing a lot of redirection, talkative, interrupting, tore his papers and threw them, complained of headaches. I shared w his psychiatrist and she said he needs a higher dose but with the headaches we cannot do that. Will go back to short acting like he was on before and change his guanfacine to extended release and up it to 2mg if the 1mg isn’t enough.

[Onthemove1971]

I love your attitude!! You are right.. nothing is permanent. This also won't be the last time you have to make changes.If I were in your shoes I would increase the Guanfacine and see if that works.

I think adding the 3rd dose of the Stimulant would really impact his sleeping.

Your son sounds a lot like ours.

Next time you meet with his Psycharist ask about Wellbutrin with guanfacine. It has really worker well and neither of these are controlled so it is much easier to get.

You are so close to getting it all dialed in and once you do it will really be amazing for you guys.

We are always here to support you!

[Alt49 in reply to Onthemove1971]

Thanks for your reply. I’ll look into Wellbutrin

[TenLha]

My then 5 yr old was diagnosed with ADHD and sensory disorder and has been having a hard time at school. Since then we have been to occupational therapy a few times so they can help him cope with the sensory disorder part. He does not like loud noises or things like basketball bouncing on the gym floor, things swinging, tags or uncomfortable things bother him.

After many trials of different meds, some that brought tics and caused a whole bunch of problems for him. Kids making fun of him because he was ‘winking’. We finally have been for over a year satisfied with 10 mg of ER methylphenidate after breakfast, he will skip lunch because of the med but will eat good dinner then 1 mg of guanfacine at bed time. The 1 mg of guanfacine at bedtime has helped him a great big deal in our experience. It’s been over a year of just really good days for him at school. At home we manage good with the same meds too. We have been giving him breaks during the weekend with just the methylphenidate, he will take the guanfacine regularly every night. When he skips the guanfacine we notice that he has a harder time during the day even with the methylphenidate.

Play therapy for a year helps him with coping strategies when he’s having a hard time. Books such as The Whole Brain Child is great for caregivers to understand what our kids are going through and also helps us help them. Our now 7 yr old son is academically caught up with his peers and doing so so much better than two yrs ago. I wish you all good luck! It does get better!!! No more crying and feeling bad for my son. I’m here instead to empower him and be here to support him. The right meds, books, play therapy and kind and loving caregivers who are patient makes a big difference.

[arrh121]

Did your doctor discuss extended vs immediate release guanfacine with you? We were on multiple immediate release guanfacine doses with our son and found things were a bit more consistent just doing one extended release dose each morning. May be worth asking your doctor about it.

[Alt49 in reply to arrh121]

Oh yes she did say we could switch to extended release with either same dose or up the dose. Good to know that helps.

[Onthemove1971 in reply to arrh121]

Our guanfacine is a 24 hour dose 1x daily.

[Mamamichl]

I would switch to extended release. It’s not so much of a kick to the brain with concentration or mood, and see if you can add a bit of he guanfaciene too. I do caution though, guan… can make someone light headed and feint since it was a blood pressure med first.

[Alt49 in reply to Mamamichl]

Thanks. He did fine w the 1mg of guanfacine. Has been on it several months. I think I will try the extended release stimulant (concerta) and see how it goes. Then maybe up the guanfacine if that doesn’t work

[Onthemove1971 in reply to Alt49]

Also can he get through the am without the medication?You could give it to him right before he jumps out of the car for school. This could add 1 or 2 hours on the back end. I hope this makes sense ( delay the am dose a little later)..

[Alt49 in reply to Onthemove1971]

He is a nightmare in the am but he doesn’t wake up much before he needs to be at school so doesn’t buy us too much time

[Onthemove1971]

Just a thought..You will get it all dialed in soon.

[Klmamma]

I'd up the guanfacine first.

We didn't have a good experience with Concerta, but you might. It did last a long time and my son appreciated that, but it's the one medication that made him a zombie.

Extended release Focalin has been excellent for us! The boosters seem to be a double edged sword.

[Alt49 in reply to Klmamma]

Thanks for sharing. The doctor mentioned focalin er as a good option but that there were shortages. Any issues with that?

[Klmamma in reply to Alt49]

We haven't had any issues lately. It was an issue several months ago. The shortage was due to the Adderall shortage actually and people switching to focalin due to that.

If you do use Concerta, just keep an eye on them. We had issues with the quality of the generic meds, but it works well for some people.

[Alt49 in reply to Klmamma]

Thank. I just picked up the generic ugh. Will give it a few days and see how it goes. Will try focalin next if this doesn’t work. I’d really love to find a once a day that lasts

[Klmamma in reply to Alt49]

Azystaris might be a good option. We haven't tried it, it's newer. At 10, my son now has 6 ounces of cold brew coffee mixed with a Fairlife Protein shake at 4 everyday to get him through the afternoon. Not sure I'd do that with a 6 year old idk. It was a struggle at that age. I hope you find something that works or coping skills improve drastically.

The Concerta lasted about 10 hours at first, 8 I think after a few months.

Focalin consistently lasts 8 hours even after 2 years. He's on 20mg now. Started at 15mg. He was on 40mg of Concerta.

[Klmamma in reply to Alt49]

In case they didn't tell you.....on the extended release meds...kids often struggle to fall asleep on night 3 or 4.

Orange juice makes the medication wear off faster too so watch citrus intake.

[Alt49 in reply to Klmamma]

Interesting thx. I will get the melatonin ready

[KayRay5]

we have a wonderful child psychiatrist who has put our son who is on twice a day 7.5 methylphenidate recommended the 1 mg of extended release guanfacine. This is smooth out the meltdowns and it’s great for the summer when he’s not always on the methylphenidate. We try to give him a break from that stimulant as much as we can, unless he’s got some kind of activity where he’s going to need it.

The guanfacine helps him sleep, too. Psychiatrist said a lot of people end up going with just the Guanfacine after a while, which is much better for the kid’s health than the stimulant is.

how late are you giving the second dose of methylphenidate? We never give it any later than two and usually before then. During the school year, the latest is 1 o’clock.

[KayRay5 in reply to KayRay5]

Dr. Lawrence Young with Young psychiatry in Minneapolis is our psychiatrist. He is excellent. Very knowledgeable.

[Alt49 in reply to KayRay5]

Thx! His 2nd dose is at noon. 8-12 and 12-4 are great. It’s wake-up to 8 (totally manageable) and 4-8 that are touch and go.

[Alt49]

update: we tried the 18mg extended release concerta (generic) today and his school camp report was not good - some of her language- impulsive, needing a lot of redirection, talkative, interrupting, tore his papers and threw them, complained of headaches. I shared w his psychiatrist and she said he needs a higher dose but with the headaches we cannot do that. Will go back to short acting like he was on before and change his guanfacine to extended release and up it to 2mg if the 1mg isn’t enough.