Post by redheadbaker on Jan 30, 2023 11:57:01 GMT -5
DS has an ADHD Combined Type diagnosis. He has MAJOR difficulty trying to fall asleep. It's common for him to still be awake at midnight or even later. We tried melatonin, but his doctor doesn't want him taking it long term.
We've tried screen-free, calming bedtime routines. We've tried eliminating high-sugar foods a few hours before bedtime. We've tried white noise. We've tried meditation soundtracks.
Has anyone taken their child to a sleep clinic for help? What can they do if the problem isn't something like narcolepsy or sleep apnea?
Post by fortnightlily on Jan 30, 2023 12:01:52 GMT -5
Following. My kid doesn't have ADHD but he's always complained about trouble falling asleep, been a nite owl, etc. He's 9.
I've wanted to try melatonin more consistently but my husband is against it because he still thinks it's more about DS just not 'trying hard enough' -- i.e. resisting eliminating distractions like music and light, always wanting one of us to lay down with him, getting up to get a drink or use the bathroom too much, etc.
When I asked the pedi about melatonin they weren't very helpful. Why is your doctor against it?
Post by penguingrrl on Jan 30, 2023 12:19:47 GMT -5
I have an appointment next week with a sleep center at CHOP for my neurodivergent teen (she has autism, ADHD inattentive type, selective mutism, and anxiety) who seems to have a non-24 hour ciradian rhythm (hers appears to remain consistent at 27 hours). I have no idea what they can do, and it was hard to even find a sleep doctor who works with peds patients. Most sleep specialists advertise apnea and insomnia because those are the most common disorders, but I’m hoping they’ll be able to help us and work with us with this because it’s destroying any and all progress we make with school refusal when she’s too tired to go to sleep then asleep at school time.
Post by sillygoosegirl on Jan 30, 2023 12:27:19 GMT -5
We have a referral, but haven't gone yet. After really struggling with sleep difficulties for over a year, we started giving DD calcium and magnesium supplements, and they seem to be really helping.
But the reason she said she thought she couldn't fall asleep was leg and back pain, although the doctors couldn't find a reason for the pain. The reason behind those particular supplements is that they are supposed to be good for muscle cramps, which I figured might be the problem when it didn't show on the x-ray, even though DD said it felt like it was her bones that hurt.
I've read in a couple places now that around 50% of ADHD kids have a diagnosable sleep disorder though. So it certainly seems worth looking into. My DD (who might or might not have ADHD--doctor thinks yes, but teacher who actually knows her thinks no) is worlds easier to be around now that she is sleeping better.
My DD (8, combined) struggled before she started guanfacine at 6 for impulse control. That has really helped. She takes it in the morning before school but definitely has a lasting calming effect on her. Before that she didn’t so much fall asleep as she did pass out. Like she would be chatting and wriggling like mad and 30 seconds later be out. Not a gradual coming down into sleep like a “typical” person might.
We have a referral, but haven't gone yet. After really struggling with sleep difficulties for over a year, we started giving DD calcium and magnesium supplements, and they seem to be really helping.
But the reason she said she thought she couldn't fall asleep was leg and back pain, although the doctors couldn't find a reason for the pain. The reason behind those particular supplements is that they are supposed to be good for muscle cramps, which I figured might be the problem when it didn't show on the x-ray, even though DD said it felt like it was her bones that hurt.
I've read in a couple places now that around 50% of ADHD kids have a diagnosable sleep disorder though. So it certainly seems worth looking into. My DD (who might or might not have ADHD--doctor thinks yes, but teacher who actually knows her thinks no) is worlds easier to be around now that she is sleeping better.
"but teacher who actually knows her thinks no"
- Just jumping in on this point. This was our experience too until middle school. L was a model child and no one could believe she could be adhd when I brought it up to the school. She 100% is, but masks at school and adhd looks so different in girls than in boys - the teachers were looking for boy signs/symptoms.
How's school going? Is he taking a lunchtime or afternoon stimulant? Does he get some sort of physical activity between the end of the school day and bedtime?
If the lack of sleep is a real sore point for the household, I would ask the pediatrician again about melatonin. Maybe you could use it for a few weeks/months and see if he can redevelop better sleep habits?
Post by fortnightlily on Jan 30, 2023 13:34:49 GMT -5
I have an adult friend with ADHD who was diagnosed with Delayed Sleep Phase Syndrome, and apparently there's a lot of literature about the two going hand-in-hand. Although there's some chicken-and-egg aspect of -- is being forced to try to conform to the same sleep schedule as everyone else just causing you to get less sleep and is the inattentiveness, trouble-concentrating, etc. partly just the result of sleep deprivation.
And then you get into the philosophies about is it really a 'disorder' or is it just a lack of accepting that people are different and that maybe society shouldn't try to force all people onto the same systems and schedules.
When I asked the pedi about melatonin they weren't very helpful. Why is your doctor against it?
He mentioned a study showing concerns about how it may affect a child's development, especially during puberty. He's 11, so puberty isn't far off.
My daughter with ADHD has been taking melatonin for years, her doctor said it was fine. Now I’m worried. The only other thing that works her her is listening to music to fall asleep.
Post by edwardo123 on Jan 30, 2023 15:37:34 GMT -5
No answers, but my 13 year old daughter has ADHD and seems to need very little sleep. She stopped napping consistently by her first birthday. Now, she goes to bed around 10 and is always up by 6 and even 4:30 on swim practice days with no problem. It drives me crazy because she is often loud and seems to be wandering the house when everyone else is trying to sleep. Our pediatrician is not concerned because some people just don’t need as much sleep.
Post by awkwardpenguin on Jan 30, 2023 15:37:56 GMT -5
My kiddo is 7, has been a crap sleeper all her life, and we started melatonin when she was 5. She regularly was staying up past 11 and melatonin moved her bedtime to 8 almost immediately. She was diagnosed with ADHD at 6 and we added a stimulant at that point, so her sleep problems predate the stimulants.
I'd honestly push back about the melatonin, and ask more about the rationale for a sleep study and how it would change his recommendations. Melatonin has been found safe and effective in a bunch of short term studies (meta analysis: www.sciencedirect.com/science/article/abs/pii/S1389945718307561) and at least one longer term study, and there's literature about its usefulness in ADHD and ASD. The strongest official statement on melatonin is "talk to your doctor before using it for sleep problems" from the American Academy of Sleep Medicine. (www.medscape.com/viewarticle/981341)
My DD (8, combined) struggled before she started guanfacine at 6 for impulse control. That has really helped. She takes it in the morning before school but definitely has a lasting calming effect on her. Before that she didn’t so much fall asleep as she did pass out. Like she would be chatting and wriggling like mad and 30 seconds later be out. Not a gradual coming down into sleep like a “typical” person might.
He's on Vyvanse. Previously he was on Focalin but that stopped working for him.
How's school going? Is he taking a lunchtime or afternoon stimulant? Does he get some sort of physical activity between the end of the school day and bedtime?
If the lack of sleep is a real sore point for the household, I would ask the pediatrician again about melatonin. Maybe you could use it for a few weeks/months and see if he can redevelop better sleep habits?
I've met with his teachers a few times (regular parent-teacher conference, and they were present for both his Gifted IEP meeting and his 504 meeting) and they have no complaints about his behavior at school.
He doesn't currently have any activities after school since the musical he was in finished up. He used to play sports (baseball in spring, soccer in fall) and I don't recall him having an easier time falling asleep on nights he had practice.
No answers, but my 13 year old daughter has ADHD and seems to need very little sleep.
I wish that were his case. He is "in bed" for the night by 10, but still awake at midnight, or later. He needs to get up at 7:30 a.m. and it's SO HARD to get him to get up and get dressed. On weekends, he sometimes sleeps until 11 a.m.
We have a referral, but haven't gone yet. After really struggling with sleep difficulties for over a year, we started giving DD calcium and magnesium supplements, and they seem to be really helping.
But the reason she said she thought she couldn't fall asleep was leg and back pain, although the doctors couldn't find a reason for the pain. The reason behind those particular supplements is that they are supposed to be good for muscle cramps, which I figured might be the problem when it didn't show on the x-ray, even though DD said it felt like it was her bones that hurt.
I've read in a couple places now that around 50% of ADHD kids have a diagnosable sleep disorder though. So it certainly seems worth looking into. My DD (who might or might not have ADHD--doctor thinks yes, but teacher who actually knows her thinks no) is worlds easier to be around now that she is sleeping better.
"but teacher who actually knows her thinks no"
- Just jumping in on this point. This was our experience too until middle school. L was a model child and no one could believe she could be adhd when I brought it up to the school. She 100% is, but masks at school and adhd looks so different in girls than in boys - the teachers were looking for boy signs/symptoms.
Could be. On the other hand, the doctor diagnosed based 100% on parent surveys, which we were supposed to answer based on how our child compares with other kids her age. Which felt completely meaningless to us because we don't know what other kids her age are like. I thought he was going to provide some insight on that, and he just didn't. It was a very frustrating experience, especially because we'd asked for her to be evaluated for dyslexia also, and he came back with basically, "We didn't need to test for dyslexia because the problem is ADHD." I feel like I still don't know if she has ADHD or not, but I do very seriously doubt it's *why* she can't read.
Post by AdaraMarie on Jan 30, 2023 18:47:08 GMT -5
My kid's sleep improved when she started taking guanfacine. Her issue included falling asleep and getting up in the night when everyone was asleep. She is struggling again after several years but I think it is puberty related shidt in aleep cycles. She went to aleep at a more normal time the other day but then was up at 4.
- Just jumping in on this point. This was our experience too until middle school. L was a model child and no one could believe she could be adhd when I brought it up to the school. She 100% is, but masks at school and adhd looks so different in girls than in boys - the teachers were looking for boy signs/symptoms.
Could be. On the other hand, the doctor diagnosed based 100% on parent surveys, which we were supposed to answer based on how our child compares with other kids her age. Which felt completely meaningless to us because we don't know what other kids her age are like. I thought he was going to provide some insight on that, and he just didn't. It was a very frustrating experience, especially because we'd asked for her to be evaluated for dyslexia also, and he came back with basically, "We didn't need to test for dyslexia because the problem is ADHD." I feel like I still don't know if she has ADHD or not, but I do very seriously doubt it's *why* she can't read.
Oh that sounds really frustrating. And sorry I just jumped into this, I'm just particularly sensitive about it because I was completely brushed off by Ls teachers in elementary school, even though I knew something was off. She was just a perfect little smart angel for them and nobody saw her struggles because it was at home.
For ADHD vs dyslexia, I think you're going to need to go get a full battery done by a psychologist. Most medical doctors aren't well taught in assessment.
Post by browneyedgirl9 on Jan 30, 2023 20:37:13 GMT -5
My DS 9 has ADHD combined. We do 1mg melatonin at night and that has worked well. He also is on guanfacine that he takes at night close to bed time as well.
I don’t think this is going to be helpful. My daughter has adhd and could not fall asleep. We did melatonin for years, which was the only thing that worked. As she got older, she kind of grew out of it. She’s 14 now, and generally she will fall asleep on her own now at a more reasonable hour (though every couple of weeks she has a night that she really can’t fall asleep).
"Hello babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. On the outside, babies, you've got a hundred years here. There's only one rule that I know of, babies-"God damn it, you've got to be kind.”
Could be. On the other hand, the doctor diagnosed based 100% on parent surveys, which we were supposed to answer based on how our child compares with other kids her age. Which felt completely meaningless to us because we don't know what other kids her age are like. I thought he was going to provide some insight on that, and he just didn't. It was a very frustrating experience, especially because we'd asked for her to be evaluated for dyslexia also, and he came back with basically, "We didn't need to test for dyslexia because the problem is ADHD." I feel like I still don't know if she has ADHD or not, but I do very seriously doubt it's *why* she can't read.
Oh that sounds really frustrating. And sorry I just jumped into this, I'm just particularly sensitive about it because I was completely brushed off by Ls teachers in elementary school, even though I knew something was off. She was just a perfect little smart angel for them and nobody saw her struggles because it was at home.
For ADHD vs dyslexia, I think you're going to need to go get a full battery done by a psychologist. Most medical doctors aren't well taught in assessment.
Do you know how much tutoring you can buy for the price of an evaluation? Just pay for the tutoring!
- Just jumping in on this point. This was our experience too until middle school. L was a model child and no one could believe she could be adhd when I brought it up to the school. She 100% is, but masks at school and adhd looks so different in girls than in boys - the teachers were looking for boy signs/symptoms.
Could be. On the other hand, the doctor diagnosed based 100% on parent surveys, which we were supposed to answer based on how our child compares with other kids her age. Which felt completely meaningless to us because we don't know what other kids her age are like. I thought he was going to provide some insight on that, and he just didn't. It was a very frustrating experience, especially because we'd asked for her to be evaluated for dyslexia also, and he came back with basically, "We didn't need to test for dyslexia because the problem is ADHD." I feel like I still don't know if she has ADHD or not, but I do very seriously doubt it's *why* she can't read.
Does your school district have an intermediate unit? We're in the Philly burbs, and it was the IU who did the ADHD eval for our son, even though he attends parochial school. They also also evaluate for LD at the same time. The teacher had to complete questionnaires, as did we, but he spent a lot of one-on-one time with the IU psychologist.
Both of my kids have ADHD, both are taking Vyvanse.
DD1 has always slept a lot, but always seemed tired. She had her tonsils and adenoids out when she was 8 and she said her sleep improved tremendously. I think her adenoids have grown back, and she's having trouble again.
DD2 is a terrible sleeper. Even without vyvanse, her racing thoughts kept her up almost every night.
For both kids, we take electronics early, they read before bed, both listen to music to fall asleep, and have fans in their rooms for white noise. DD2 takes melatonin nightly. More recently, I started giving her CBD before bed. It seems to help the racing thoughts. DD1 takes melatonin probably once or twice a week.
No answers, but my 13 year old daughter has ADHD and seems to need very little sleep.
I wish that were his case. He is "in bed" for the night by 10, but still awake at midnight, or later. He needs to get up at 7:30 a.m. and it's SO HARD to get him to get up and get dressed. On weekends, he sometimes sleeps until 11 a.m.
My daughter is on the spectrum and we have to keep her schedule the same regardless of the day of the week - so I would get him up at 730 every single day, not let him sleep in on the weekends. My daughter got into a bad habit of sleeping in on the weekends and then staying up to late the next day and we got in a bad cycle. Sorry if you've already tried this.
She also listens to audiobooks on her phone when she goes to bed - it's still definitely a bit later than I'd like but at least it gets her resting even if she takes a while to fall asleep (I do too, I'm a horrible sleeper unfortunately)
Two kids with ADHD, one without. The two kids with ADHD have much more trouble falling asleep (even before meds, one kid wouldn’t sleep even as a baby and the other did okay ish when he was a baby/toddler) and the kid without ADHD goes to sleep much much easier and always has.
My oldest with ADHD is 16 and she stays up way way too late and is a bear to wake up. We’ve tried a wide variety of things to help her fall asleep through the years. She is no longer a willing participant though, because she LIKES staying up really really late and doesn’t care that it affects her the next day. She wants it so she is not willing to do anything to change it. I would love to take her to a sleep specialist, but she’s completely unwilling. I think her tonsils are probably a problem, but not enough to get them out.
My youngest with ADHD is 11. He’s starting to hit the puberty sleep shift which is just exacerbating everything. He will go into his room and mostly stay there so it doesn’t bother me too much. He’s fairly difficult to wake up, but he manages okay so far. He did have his tonsils and adenoids removed several years ago and definitely sleeps better through the night now.
I’m contrast to that is my middle kid without ADHD who is 13, who goes to sleep when she feels tired and it’s at a reasonable time, is able to wake up on her own easily and it’s just so completely different from the siblings.
Oh that sounds really frustrating. And sorry I just jumped into this, I'm just particularly sensitive about it because I was completely brushed off by Ls teachers in elementary school, even though I knew something was off. She was just a perfect little smart angel for them and nobody saw her struggles because it was at home.
For ADHD vs dyslexia, I think you're going to need to go get a full battery done by a psychologist. Most medical doctors aren't well taught in assessment.
Do you know how much tutoring you can buy for the price of an evaluation? Just pay for the tutoring!
I think this only works if you have very clear academic deficits to focus on in tutoring. But clarifying ADHD vs. dyslexia vs. both really needs an evaluation. Also without any diagnosis documentation, the 504/IEP process is more difficult and might come out with the wrong supports.
Post by estrellita on Jan 31, 2023 12:42:06 GMT -5
E has ADHD and has had trouble sleeping for years before his diagnosis. We sometimes do melatonin, but we try not to do it every night as we don't want to create the habit. He is in his room around 7:30 but has said he is up until 11 sometimes. He usually reads, occasionally plays with stuff even though we've told him we prefer him reading. He has a lamp we just put a timer on so it shuts off at 10 and we can tell if he turns it back on. I'm hoping this helps but I did tell him we might need to move it back to 9 or 9:30 if we still think it's an issue. He's definitely a night owl, so it's tough. We do try to avoid anything too simulating before bed too. We've kinda just been doing those things and letting him feel tired at school as a natural consequence, but I think his meds have helped with that!
Post by longtimenopost on Jan 31, 2023 14:43:23 GMT -5
My 10 year old with ADHD is on quillichew and takes 1mg melatonin every night, and has for years. Her psychiatrist hasn't mentioned any concerns.
She also listens to books on tape, specifically Jim Dale reading Harry Potter. She will not fall asleep without it. I'm kind of surprised she hasn't developed a British accent after 1000s of hours of listening to his calming voice!
Do you know how much tutoring you can buy for the price of an evaluation? Just pay for the tutoring!
I think this only works if you have very clear academic deficits to focus on in tutoring. But clarifying ADHD vs. dyslexia vs. both really needs an evaluation. Also without any diagnosis documentation, the 504/IEP process is more difficult and might come out with the wrong supports.
Yeah, this is where we started (intervention without formal evaluation). At this point my kid seems to have mastered all the building blocks of reading, without actually learning how to read. Like, she scored 74th percentile for "word attack", but 1st percentile for oral reading rate, and 9th percentile for accuracy. I'm a believer in the OG method, but I don't think more OG on top of the OG we've already done is going to fix this. I do hope that maybe there is some other intervention that will, but I'm really not sure what. (We've also already gotten reading glasses, done vision therapy, and are currently working on more phonemic awareness training.)