The stupid sleep disorder doctor is only a pediatrician pumenlogist(sp). She has no idea why he doesn't sleep, or why he wakes up so many times. I am going crazy, cause I am barely sleeping ie only a couple hours a night. His seizures has decreased, or at least I haven't noticed them. Anyways all this doctor wants to talk about is sleep hygiene basically a dang routine, and making sure his room is not to hot or cold, no tv, blah, blah blah.. I have been doing this for so dang long it doesn't matter. Why can't they see that something is not right when a 4 year gets up and ants to play a 2am, or that he gets up 3-4 times a night. He is only sleeping about 4-5 hours a night. Naps what the heck is that, He hasn't had a nap since he was 1. During his sleep study he woke up 7 times.He does not have obstructive sleep apnea. He has prolonged onset to REM sleep and diminished amount of REM sleep for his age. There diagnoses was underlying pulmonary or neuromuscular abnormality. For the pulmonary issues he was put on inhaler at bedtime which has helped with his coughing. Sorry to vent, I just don't get it!!!!!! Why wont anyone listen, fixing his sleep hygiene isn't going to help this.
OMG at my its end
BusynMember
Well-Known Member
He's on a lot of medications, including a stimulant. Any chance it could be the medications?
He was on Aderall before the daytrana, we went off of it for two weeks with no improvement in sleep but he did gain 2 lbs! He has always had sleep issues, I am really thinking about calling Mayo Clinic and making an appointment there. His NeuroDoc is trying to see if we can get into another NeuroPsy appointment before June!!!!!!!!!!!!!!
You won't like what I have to say, but I will say it anyway. I have sleep problems, and come from generations of them. My mother says that I am "on the vampire shift" because I just don't sleep well at night. I never have.
Sleep hygeine actually IS as important as she says. IF you can get a routine, make a sign with the times, what he should do, and then stick to it? You actually might see a HUGE change. I thought it was BS for years. I finally figured out that until I tried it, I was NOT going to be able to access other help for the problem. It didn't cure my problems, but it did make a big difference.
WHen we implemented a plan for Wiz when he wasn't sleeping, it made a big difference. Took a rough couple of weeks, but it helped. It is NOT a magic fix by any means, but it helped a LOT. One of the BIG key things is to NOT allow him to play when he wakes up in the night. My husband used to be confused because if the kids woke up in the night and he let them watch tv, they then got up every night. But if I got up and did NOT let them play, watch tv, even read (that was really hard because we are total reading addicts in my family), then it was a one night thing and sleep was had by all. We used audiobooks of soothing, non-violent books to help when our kids were going to sleep. My dad recorded the old Uncle Wiggily stories for my kids and WOW he has this deep, relaxing voice that is amazing.
THe other part of this is that MAYBE sleep hygeine won't help. But you will NEVER know until you try, and you will NEVER get more help until you try and it fails. I have seen data that as many as 80% or more of those who think they have insomnia actually just don't go to bed and close their eyes and lay there to try to sleep - and when they do this they DO fall asleep.
Unless your child already has good sleep hygeine, you have NO way of knowing it won't help. It is a change, and sets some limits which won't be fun the first week or two. In time it will either help or it will show the dr that you gave it a darn good try and need more help. But the ONLY way to get that more help is to jump through their hoops. Annoying, but you could be surprised. I know I was.
by the way, if a child gets up at 2 am to play and is allowed to play, he WILL get up over and over again. I had the HARDEST time getting husband to grasp this. He would let the kids watch tv and then be shocked when it happened the next night. So I would make him deal with all kid problems if he got up and let them play rather than making them go back to bed, listen to an audiobook or classical music, and wait until morning. Actually classical music is often amazing at putting kids to sleep. I can remember try running crying from a store in a mall because "It's not bedtime!!" and they were playing the same Mozart that we played at bedtime each night. It has been 7 or 8 years since we used it regularly with him and STILL it will get him to sleep if he is having problems of feeling yucky.
The WORST that good sleep hygeine can do is establish a routine for bedtime. If that happens, you can then go to the doctor and say "we have done this for a month with NO results. Now can you help us?" Sometimes that has to be done even when it is a PITA.
Sleep hygeine actually IS as important as she says. IF you can get a routine, make a sign with the times, what he should do, and then stick to it? You actually might see a HUGE change. I thought it was BS for years. I finally figured out that until I tried it, I was NOT going to be able to access other help for the problem. It didn't cure my problems, but it did make a big difference.
WHen we implemented a plan for Wiz when he wasn't sleeping, it made a big difference. Took a rough couple of weeks, but it helped. It is NOT a magic fix by any means, but it helped a LOT. One of the BIG key things is to NOT allow him to play when he wakes up in the night. My husband used to be confused because if the kids woke up in the night and he let them watch tv, they then got up every night. But if I got up and did NOT let them play, watch tv, even read (that was really hard because we are total reading addicts in my family), then it was a one night thing and sleep was had by all. We used audiobooks of soothing, non-violent books to help when our kids were going to sleep. My dad recorded the old Uncle Wiggily stories for my kids and WOW he has this deep, relaxing voice that is amazing.
THe other part of this is that MAYBE sleep hygeine won't help. But you will NEVER know until you try, and you will NEVER get more help until you try and it fails. I have seen data that as many as 80% or more of those who think they have insomnia actually just don't go to bed and close their eyes and lay there to try to sleep - and when they do this they DO fall asleep.
Unless your child already has good sleep hygeine, you have NO way of knowing it won't help. It is a change, and sets some limits which won't be fun the first week or two. In time it will either help or it will show the dr that you gave it a darn good try and need more help. But the ONLY way to get that more help is to jump through their hoops. Annoying, but you could be surprised. I know I was.
by the way, if a child gets up at 2 am to play and is allowed to play, he WILL get up over and over again. I had the HARDEST time getting husband to grasp this. He would let the kids watch tv and then be shocked when it happened the next night. So I would make him deal with all kid problems if he got up and let them play rather than making them go back to bed, listen to an audiobook or classical music, and wait until morning. Actually classical music is often amazing at putting kids to sleep. I can remember try running crying from a store in a mall because "It's not bedtime!!" and they were playing the same Mozart that we played at bedtime each night. It has been 7 or 8 years since we used it regularly with him and STILL it will get him to sleep if he is having problems of feeling yucky.
The WORST that good sleep hygeine can do is establish a routine for bedtime. If that happens, you can then go to the doctor and say "we have done this for a month with NO results. Now can you help us?" Sometimes that has to be done even when it is a PITA.
The problem is we have tried it over and over again. We tried on medications off medications, he will not sleep!!!difficult child 3 is only 4. He has been doing this since day 1, but it is a lot easier when you are a baby. He can stay up for over 24 hours well into 48 if we let him.I know that if he does not get the rest his body needs, it will lead to more seizures. I just want to help me son and our family.
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Can you tell us what the bed-time and night-time routines are?
Who sleeps where, what prep is done for bedtime, all the things you've tried (and for how long... )?
We're here for you - trying to accomplish one of two things...
1) find some other creative (even if partial) solution, AND
2) helping you document what you have tried
Have you started a parent report? (the link is on susiestar's sig, I think)
Who sleeps where, what prep is done for bedtime, all the things you've tried (and for how long... )?
We're here for you - trying to accomplish one of two things...
1) find some other creative (even if partial) solution, AND
2) helping you document what you have tried
Have you started a parent report? (the link is on susiestar's sig, I think)
buddy
New Member
My friend's son has this problem. He is 15 now. They just finally found out that not only were the seizures waking him and keeping him up but they were increased by a huge lack of oxygen when he would lie down. There are many sleep disorders, I forgot....has he had any sleep study or inpatient seizure study??? They can work together to do an inpatient sleep study and analyze things together too.
ok update: found it in your first post....so yes, I would look for others with more expertise and a longer study so they can try interventions there. Sorry, sleep disruption can hurt the whole family..... poor little guy.
I completely understand your frustration and how hard this is. It was very hard to get Wiz to sleep.
What documentation of prior attempts do you have? I don't know if I have suggested this, but do you have a Parent Report? It is one of the most powerful tools we Warrior Moms have.v It is a report that has every detail about your child in one document that YOU create. Some of the moms here created the outline years ago. The thread with the outline and the explanation can be found via the link in my signature.
HOW does a parent report help with difficult child's sleep issues? With a parent report, you can take out the section about his sleep and ALL the things you have tried and say "doctor, we have done this adn this and this and this and this to help this problem. We did this A in this manner, following the directions in Book A/from Dr. B/whatever, for this many days/weeks/years."
You then give Dr a copy of the sleep section and any other parts that are relevant, and ask what else might help?
The doctor will likely STILL be convinced that if you just did t HIS WAY then your son would go to bed at 7:30, sleep until 6 am, take a 1 hr nap and be the most charming, sweet, perfect child that ever existed. You won't likely convince him unless you actually do what he wants for a limited amt of time, but at the next appointment you can then say: "Dr, we did exactly what you asked and here is a report on how it worked." You include the times each part of his way happened, how difficult child reacted, if he actually went to sleep, what time he got up, etc...
This does a couple of things. It shows the doctor that you are willing to do the hard work. it shows that you won't just shoot him down rather than trying, and it lets the doctor move past this to figure out what is really going on.
Annoying and stupid as it is, the hoop has to be jumped through because many docs think that they have the magic secret that gives you a new outcome for doing the same old thing over and over.
I am so sorry it is this rough.
What documentation of prior attempts do you have? I don't know if I have suggested this, but do you have a Parent Report? It is one of the most powerful tools we Warrior Moms have.v It is a report that has every detail about your child in one document that YOU create. Some of the moms here created the outline years ago. The thread with the outline and the explanation can be found via the link in my signature.
HOW does a parent report help with difficult child's sleep issues? With a parent report, you can take out the section about his sleep and ALL the things you have tried and say "doctor, we have done this adn this and this and this and this to help this problem. We did this A in this manner, following the directions in Book A/from Dr. B/whatever, for this many days/weeks/years."
You then give Dr a copy of the sleep section and any other parts that are relevant, and ask what else might help?
The doctor will likely STILL be convinced that if you just did t HIS WAY then your son would go to bed at 7:30, sleep until 6 am, take a 1 hr nap and be the most charming, sweet, perfect child that ever existed. You won't likely convince him unless you actually do what he wants for a limited amt of time, but at the next appointment you can then say: "Dr, we did exactly what you asked and here is a report on how it worked." You include the times each part of his way happened, how difficult child reacted, if he actually went to sleep, what time he got up, etc...
This does a couple of things. It shows the doctor that you are willing to do the hard work. it shows that you won't just shoot him down rather than trying, and it lets the doctor move past this to figure out what is really going on.
Annoying and stupid as it is, the hoop has to be jumped through because many docs think that they have the magic secret that gives you a new outcome for doing the same old thing over and over.
I am so sorry it is this rough.
Bedtime..... medications given at 7pm. Bath every other day due to eczema, eucerin cream, then brush teeth, then I take him to his room hen I notice he is getting sleepy from the clondine. I read to him until he falls sleep, because if I leave the room he is up playing. He does not play in his room anymore, so I always have all his toys in my living room. We keep his door open just in case he has a seizure. It just seems to me the only docs who get this are his Neuro docs. for two months we kept a calender of just his sleeping, and seizures. The only times he slept all night was after a really big seizure. The sleep disorder doctor we saw was only a pulmonary doctor, she told us we needed to talk to his neuro doctor about the other reasons he might not be sleeping. Last night this morning he got into cookies, the popcisles, just to name a few. Then he crawled into bed with us sometime before 3am....before he finally slept. It is like he is up and down all night long. thanks for the advice, I will look into that parent report. I will try anything to help him. He is my baby, its just so hard when I know that all my other kiddos went to bed about 8-8:30pm and slept until 7am. When they were this age. I just want answers, to know what to do to help him.
These suggestions will absolutely not be THE answer(s), but... might be worth at least adding to the "we tried this" list?
- white noise or soft classical music - all night, if necessary.
- extra warm jammies, so he doesn't wake up because he's cold (after losing blankets) - more 'blankets' on baby, less on bed...
- Have you tried sleeping on a cot in his room... not for the long term, but so that you know exactly when he gets up, and can tuck him back in while making note of any patterns... does this happen at a consistent time? is he getting up to go to the bathroom and then staying up? etc.
- white noise or soft classical music - all night, if necessary.
- extra warm jammies, so he doesn't wake up because he's cold (after losing blankets) - more 'blankets' on baby, less on bed...
- Have you tried sleeping on a cot in his room... not for the long term, but so that you know exactly when he gets up, and can tuck him back in while making note of any patterns... does this happen at a consistent time? is he getting up to go to the bathroom and then staying up? etc.
buddy
New Member
Again, may not be helpful but I gave my son's old "squish" vest to a friend whose son could not sleep and from day one he calmed within 15 minutes...he preferred to leave it on, maybe like a hug? but they say it wears off in 20 min or so but for both my son and this child that was not the case.
We also have very very heavily weighted blankets. You can purchase them....catalogs and some make them privately. Q likes TWO of them on him... I can barely lift one of them...
He actually gets way to hot and drips sweat. He only likes one blanket. I have tried the white noise that seems to make it worse. I haven't noticed any patterns except this seems to happen in the first half of sleep, usually by 2am he is asleep and staying that way. I have tried sleeping in his room, but now days I try to just stay awake because he knows how to get out of the house.
Notice how you're starting to document what you've tried?
At least we're helping with THAT part, if nothing else!
Once sleep problems start (and yes, I know, he started off that way...), they snowball. SO... he's probably a really wound-up kid, running on adrenalin and such, which boosts brain power... and deviousness. The lack of sleep, makes it harder to sleep.
You're pursuing all the right angles... it just takes WAY too long. We know.
At least we're helping with THAT part, if nothing else!
Once sleep problems start (and yes, I know, he started off that way...), they snowball. SO... he's probably a really wound-up kid, running on adrenalin and such, which boosts brain power... and deviousness. The lack of sleep, makes it harder to sleep.
You're pursuing all the right angles... it just takes WAY too long. We know.
buddy
New Member
I bought the number combination kind and a bonus is that I could lie and say it was connected to the police, lol....
Have to say the first set I got I showed my mom how to use (can't turn it off without knowing the code and they are not expensive, relatively speaking) and our building had a scheduled fire alarm test and I forgot to tell her... she tried and tried the code. I came home to wires torn out of everything! LOL
Q didn't see that though so I just replaced it... he had no clue. And by the way I fastened it to the highest I could reach on the door.
White noise makes me nuts. husband used to get those sound machines and always wanted rainforest sounds or waterfalls or somethng and they made me crazy. I had a hard time sleeping while preggo and for some idiotic reason he insisted that we HAD to have the waterfall noise on at night. So I insisted he HAD to get up and go get somethng for me each time I woke up to pee. Which was about every 45 min all night. Took him 3 nights to figure it out. He can be a bit slow, lol.
Audiobooks work for me. For a kid I would use very boring but sweet stories. I wish I had one of the ones my dad recorded for my kids. He read Uncle Wiggily (very old stories about a bunny gentleman and his charges) and his voice is perfect for helping calm kids. We actually couldn't play them on the car radio because they put husband and I to sleep - NOT good while driving! The sp ed teacher in his jr high even used them with some of the kids in her class as a calming tool. thank you did pretty well with Magic Treehouse audiobooks - they had enough going on to keep him listening but not enough to rev him up the way Harry Potter did. Even Wiz, who was revved by everything, was calmed by audiobooks.
I hate that a BIG part of getting the right help for our kids is getting past the "reinvent the wheel" syndrome that most docs seem to have. They want to give a new/different diagnosis even if it has been ruled out or the current diagnosis is exactly what is going on, and they want you to go back and do all the stuff you have already done six times for other docs. It drives me nuts. I have found the Parent Report to be the documentation that we have done this and gotten a result that shows it is not what we were trying to accomplish.
The docs/"experts" we have seen ignored me when I told htem we did whatever already, but when it was typed on a piece of paper it became "real" and "evidence" or "proof" that we had tried it. Even when I was the one who typed the paper!! So I totally understand how this can all make you nuts.
We also found that aromatherapy helped. Mostly we used lavender because the kids all love it. You can put a bit of essential oil on a pillow or dilute it with water and spritz the room. Alone it won't do much, but we found that if we combined a lot of little things like this, it helped us reach the goal.
Do you think he is on the right seizure medications? I know it is hard to tell, but what is your gut feeling? Do you think that adding a medication to help induce sleep would be useful? I am sure that part of you wants to think it is nuts to drug a kid to get him to sleep at age 4, but sleep is SOO important to every function of our bodies. Given that you have done all the other things, a medication for sleep might not be a bad idea. I don't know if trazodone or remeron would be something that worked with his other medications, but I have used them and so have my older 2 kids and for the most part we had no problems. The kids had no problems, but one doctor would only give me the remeron tablet that dissolved under your tongue and it has a sweetener that I am allergic to and I would take it and then be fighting sleep as I threw up and swelled up. But it wasn't the medication, it was the sweetener and I had good results from the normal tablets of the medication. Jess was on remeron at 6-7yo and then on trazodone from age 10-12 as we worked through some things in therapy. Wiz has taken trazodone for six or seven years and has had great luck with it. thank you does pretty well with benedryl when he can't sleep. At least so far.
I really hope the neuro is able to get some help for the sleep problems. You might actually see some reduction in the adhd problems if difficult child can get enough good quality sleep.
Audiobooks work for me. For a kid I would use very boring but sweet stories. I wish I had one of the ones my dad recorded for my kids. He read Uncle Wiggily (very old stories about a bunny gentleman and his charges) and his voice is perfect for helping calm kids. We actually couldn't play them on the car radio because they put husband and I to sleep - NOT good while driving! The sp ed teacher in his jr high even used them with some of the kids in her class as a calming tool. thank you did pretty well with Magic Treehouse audiobooks - they had enough going on to keep him listening but not enough to rev him up the way Harry Potter did. Even Wiz, who was revved by everything, was calmed by audiobooks.
I hate that a BIG part of getting the right help for our kids is getting past the "reinvent the wheel" syndrome that most docs seem to have. They want to give a new/different diagnosis even if it has been ruled out or the current diagnosis is exactly what is going on, and they want you to go back and do all the stuff you have already done six times for other docs. It drives me nuts. I have found the Parent Report to be the documentation that we have done this and gotten a result that shows it is not what we were trying to accomplish.
The docs/"experts" we have seen ignored me when I told htem we did whatever already, but when it was typed on a piece of paper it became "real" and "evidence" or "proof" that we had tried it. Even when I was the one who typed the paper!! So I totally understand how this can all make you nuts.
We also found that aromatherapy helped. Mostly we used lavender because the kids all love it. You can put a bit of essential oil on a pillow or dilute it with water and spritz the room. Alone it won't do much, but we found that if we combined a lot of little things like this, it helped us reach the goal.
Do you think he is on the right seizure medications? I know it is hard to tell, but what is your gut feeling? Do you think that adding a medication to help induce sleep would be useful? I am sure that part of you wants to think it is nuts to drug a kid to get him to sleep at age 4, but sleep is SOO important to every function of our bodies. Given that you have done all the other things, a medication for sleep might not be a bad idea. I don't know if trazodone or remeron would be something that worked with his other medications, but I have used them and so have my older 2 kids and for the most part we had no problems. The kids had no problems, but one doctor would only give me the remeron tablet that dissolved under your tongue and it has a sweetener that I am allergic to and I would take it and then be fighting sleep as I threw up and swelled up. But it wasn't the medication, it was the sweetener and I had good results from the normal tablets of the medication. Jess was on remeron at 6-7yo and then on trazodone from age 10-12 as we worked through some things in therapy. Wiz has taken trazodone for six or seven years and has had great luck with it. thank you does pretty well with benedryl when he can't sleep. At least so far.
I really hope the neuro is able to get some help for the sleep problems. You might actually see some reduction in the adhd problems if difficult child can get enough good quality sleep.
