This is a question for all the moms/dads/caregivers who have a kiddo who needs their stimulant IMMEDIATELY upon waking to avoid extended period of dysregulation.
When does this get better? Does this get better? Please say it gets better.
My son is 9 and I still have to listen like a hawk for the slightest bit of movement from his room in the morning so I can run like hell to give him his med. If I keep him "contained" to the couch or kitchen table for breakfast, and really stay on him when the dysregulated noises start, it's not horrible waiting for the 30min for med to kick in, but my god..if he is awake even 10min on his own before getting the med or has free range to the house, he becomes SO obnoxious and dysregulated. Then like magic the med kicks in and my boy is back. He will say, I'm sorry mom, can we restart? Which of course I always say yes, but holy cow it's just amazing to me the difference.
I had a patient of mine tell me recently isn't it so great when they reach this age and can get up on their own, make breakfast,etc. It's been this way for as long as I can remember so am curious if any others can relate and have older kids who *fingers crossed* grew out of this soon. He metabolizes meds really fast (Takes 2 long acting plus a booster just to make it to 6:30pm ish) Also takes guanfacine am and pm.
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Thanks for the post. Yes it gets better.. with maturity.
For us, the best choice I made was to work with a Child Psycharist. This team member helped me get through middle school. She also recommended a non stimulant which was a 24 hour dose taken at night time. The medication is Guanfacine and it helps so much with mood and focus ( for school). She also wrote me letters of support when I needed it.
The need for different types of medication and different doses of medication grow a lot as our son got older.
One suggestion is can you make sure he is falling asleep and staying asleep. If he is not getting enough sleep that could really impact things.
Hi! Thanks for the response. Yes, thankfully he is a good sleeper. We would definitely know if he was not staying asleep. He falls asleep by 8:30pm and stays asleep until usually 6-7am.
This obnoxious/dysregulated/pushing family buttons before morning med kicks in behavior has been going on since he was probably 5. Then once everything is on board he is back to my sweet, kind and calm kid.
We work with a child psychiatrist we really like and he does take guanfacine in the am and again at 4pm. We have tried doing it later in the evening but then he is too wild to fall asleep. I have thought about the 24hr version but have heard there is greater chance for side effects and I also worry since he is such a fast metabolizer that it wouldn't really last. It's something I will bring up again though next check in.
Our son was the same way with the way he metabolized medication, that is why the 24hr dose helped. He still needed am and pm dose but it felt like the medication "covered" him when he woke up in the am. Good luck!
Oh, I see. That is actually really interesting and I definitely want to talk with her about that asap then. Would be nice to test it out before school starts!
You may also ask if they think an increase in the dose for Guanfacine would be appropriate. I was told when dose, type and timing of medication is all dialed in 60% of the symptoms from ADHD will go away.
It doesn't sound like he is there yet.
When it is all dialed in it is magic!! It doesn't seem like he struggles with the symptoms.
Yes, before school start would be best.
Thanks for sharing your struggles and big hugs for all you are dealing with.
We have tried going up in dosage twice over the years and he ends up more emotional and irritable. Really excited and a little nervous to try the Intuniv but it's the best time to do it and payoff could be great Focus is pretty great with the stimulant its just the morning time and I would say impulsiveness that could use some improvement. Thanks again!
I'm guessing that's the route we will need to go too, and will definitely start it in the pm, as without it he will not fall asleep! I always joke to his doctor if we can get a script for tranquilizer darts as even with 2 benadryl he is right as rain😜 I'd be on the floor!
You might also want to ask about the stimulant in a patch form (daytrana). I had to try this with my kids (my daughter because she had major problems swallowing pills and my son due to the general ADHD med shortage). I was surprised to find that the dosage lasted much longer (since both my kids processed the meds very quickly when taken orally). It might not work the same with your kid, but if it's a similar stimulant, then it might be worth a try.
I have thought about that but he metabolizes so fast and also his doc didn't think it would be a good fit due to his other side effects he has had on certain stimulants. I can see how it could benefit some
not much different than what others have said, our guy got a lot easier when he turned twelve. He’s always been a late sleeper so I would have to wake him up on school days. I would bring up his pills and give them as I was waking him up. Then he’d taken ten minutes to make his way to breakfast. We’d at least be closer to the magic reset time. Making sure he gets 10 hours of sleep is critical as well. Good luck!
Man those really bad mornings are so hard. They get everyone in the house to the breaking point, then magically med kicks in and it's like none of it happened. Can be so draining!
Unless you have an ADHD spouse too who holds a grudge like a 4 year old who was denied his favorite snack. I'm ready for a divorce for real. It's hard out there.
Yeah, that sounds like it would be tough. My husband also has adhd but thankfully let's things go pretty easily. But at the same time forgets everything 🙃
hi! Thank you for sharing! Is the kiddo taking immediate release (IR), or extended release (ER)? If IR, you may want to look into ER so that the med doesn’t fully leave the body until the next dose is taken. It has helped me and my partner with ours.
My husband also has adhd and has tried many stimulants with no luck. He tried Strattera and it was the first time he felt an improvement with anything but the side effects outweighed the benefit. He tried immediate release guanfacine for a while as well with no noticed improvements. He is going to ask about the extended release.
The non stimulants work quite differently. I don’t condone allowing others to try my medication because I’m not sure how the meds mix. Also, we have had a lot of issues with gianfacine. My partner got light headed and my stepkid feinted. Some of the constituents are blood pressure medications and control impulsiveness but not the racing thoughts.
I do recommend a gene sight test if you’re in the United States. It will tell you which meds will have adverse side effects. Won’t say which meds will work, but it’s a good place to start and be safe.
Hi - We're still working on some major dysregulation/behavior issues with our 10 year old. Over the years have tried different stimulants, non-stimulants, anxiety and other meds. When something seems to be working fairly well, my child must have a growth change and we need to make some med change. The newest change has been to try Jornay PM which is given at bedtime and should be working within 8-10hours (essentially upon waking). I have definitely seen a good difference in the AM but still working on dysregulation/behavior at times throughout the day. Everyone says things will change with maturity and learning skills through group therapy (which has been ongoing for some years now). Things have gotten better in some ways (not as often or lasting as long) over the years but some have gotten worse (attitude, hurtful words, some aggression). Fingers crossed that it keeps getting better and easier for everyone dealing with similar issues in their lives...
We've definitely been there where the dysregulation/major outbursts were much more frequent. For my son, a lot of it stemmed from anxiety. We made a lot of changes within the last year and a half. His zoloft definitely helped alot with the general anxiety but not so much the social end. He would still lash out at us in times of discomfort. We got rid of all gaming devices and he is only allowed one hour of I pad time in the evening IF he earned it. Homework, chores, being respectful to everyone in the house is a must. (He just went through a period recently where he was talking back more and picking on his brother) so he lost the I pad for awhile until he could turn it around. Consistency is key. And I always use language like "We want you to have your screen time but it looks like your making choices that don't earn it. Vs I'm taking it away if you don't stop" I also enlisted a "helper" outside the house. Someone we can call if his behavior started to get out control and they could talk to him and ask what was going on and how they could help. Trust me when I say that helped big time. They do NOT want others outside of the family knowing how they act. It's embarrassing to them as it should be. The helper doesn't lecture its just a check in.
2nd thing I did this summer was stop accommodating his anxiety. He really dislikes big team sports or chasing. He has refused to join anything for years and because I would always get embarrassed by his behavior I stopped trying. I regret that. We started with a small ninja group place where is little brother could also be a part of it. He did that for 6 weeks (disliked it) but again he either chose to do it or he was choosing to lose the screen time. He then did a single day horse camp and loved it. He asked if he could drop the ninja course and do horse riding. Started the next day and rides with a small group of 4. His confidence has soared already.
Hang in there. I know it's tough and I know there's always more around the corner that we will have to tackle as he grows.
You are the best for drawing the line and also allowing him the try other things. There are a number of therapeutic horse riding program for children where the horses were abused and many children love the connect they make to an animal.
Best of luck hang in there. Our son is 17 years old and we can finally openly discuss all of the PTSD from middle school.
Thanks so much for sharing with us what you are doing.
Thank you Yes, I firmly believe in authoritative parenting not permissive style. I also have always been as honest as possible with him about his diagnosis and why we take meds and why we need to try new ones sometimes. Because of this, he always knows he can count on me for the truth across the board.He really has taken to his horse and it's really cool to see them form a bond. He also has to keep his body and voice calm during the entire lesson which is really great!
This place can be a great way to get advice. I've definitely picked up some helpful tips Not everyone parents the same so you just pick what works for your family
My son is 13 and it is still like you describe. He can't get up on his own. We tried letting him watch TV until we get up. But that didn't work too well. So I'm still waiting and hoping.
Setbyour alarm to wake him up at 6 and tell him to go back to sleep. He should be groggy enough to go back to snooze a bit longer. That might be 5 maybe. My son it was 5:30am. His bus was at 6:30. He didn’t like a lot of time in the morning so we made sure he was functional with this time. There is also Jornay which is a delayed release stimulant that kicks in overnight eight hours later.
Unfortunately for my daughter (11), it has only continued to get worse in the morning. I spend a lot of time with her in the morning ensuring she gets dressed, eats her breakfast, takes her medicine, etc. She can’t do this without my constant oversight. I find the more stressed I get (I am also trying to get ready for work at the same time), the worse it is. So I try to stay calm. I do wonder ultimately how she’ll be able to attend college, etc, in her later years. I really hope things get better as she matures but so far no dice. She’s very resistant to medicine but she does take a low dose of Vyvanse. Even that takes a long time for her to get done each morning.
Very true, if I'm rushing to get myself ready or stressed it always makes things worse. If I keep a calm tone and wait out the 30 minutes it goes smoother.
Is Journay a pill? My daughter can’t swallow pills. She takes Vyvanse as it is a capsule that you can open and mix into yogurt. Also, does Jornay cover the full school day if you take it the night before? Thanks!
It’s a capsule that you can open like the vyvanse. I would talk to your doc about it. It was suggested for us for the same reason and my son is also on vyvanse now too
You have no idea how you described my situation exactly! My son is 13 and this has always been the norm. If I give his Focalin to him right when he wakes up it is like magic. The only thing I have started to realize is a downside to this is Focalin seems to accentuate has insect phobia. He becomes super sweet with his stimulant but so terrified there is some bug on him, his clothes, his bed, etc. I have to turn each piece of clothing inside out to show him no bugs. So, either I have a total jerk with no stimulant but also no panic attacks or a sweet boy with this anxiety/panic attacks with bugs after I give him Focalin. We have started Seraquil and decreased the Focalin dose hoping that will help with the anxiety. Praying things are better after puberty hits! It is a relief not to feel so alone.
My son had this EXACT fear with long acting Methylphenidate. Was terrified there could be a bug somewhere in the house. Literally would break down in tears if I asked him to get something from another room (in an open concept house) We took him off of that and to Focalin. He still has anxiety but nothing like that. Within 2 days of coming off the Methylphenidate he was no longer afraid to go outside,etc.
so maybe I should switch stimulants… the doctor seemed to think any stimulant would have the same effect and it is just the fact it helps him focus it also makes him focus on all his already existing fears. He is on Guanfacine and Clonidine for his ADHD and Tourette’s. Also as we are decreasing Focalin we have added Seraquil for the anxiety. Trying to get this figured out before school starts. 🤯
The doctor we were with at the time felt the same as well. Thankfully, I have always kept a journal of my sons behavior (if it was good, new things popped up) and if we started a new med. I realized we had just switched over from short acting methylphenidate to the long acting 3 months earlier and that's about when all these super irrational fears came to be. I stopped giving the long acting and went back to short acting for 2 days. His generalized anxiety was still there but the irrational fears of bugs and going to the bathroom alone disappeared. We then switched to Focalin. My son also takes Zoloft and guanfacine. My son still takes methylphenidate short acting for a booster with no issues. Maybe it is in the stimulant for your son and maybe not but if its that severe I don't know why it wouldn't be worth trying something else, especially since you find out so quickly.
I will add- my son had NO previous fears of bugs or going to the bathroom alone prior to this. Also, my son tried Concerta (also in the methylphenidate family) and had really bad side effects. So just goes to show that even in the same class of stimulant kids can have different reactions.
I just wanted to share an update. We have seen a really nice reduction in morning dysregulation since switching to Intuniv. I would say a 70% difference for the better! He is no longer super obnoxious and loud. So glad we decided to try!
I was worried about the transition from Guanfacine but his doc had him continue taking it while adding on the intuniv slowly. He has landed on 2mg Intuniv in the morning and we are still taking 1 1/2 guanfacine in the late afternoon. I have been nervous to cut that one off since it helps SO much with sleep. Doctor said if needed, we can keep that dose on for awhile.
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Focus is pretty great with the stimulant its just the morning time and I would say impulsiveness that could use some improvement. Thanks again!
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