Sheathefish1
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This is so frusting..My almost 17 month old is refusing to take his 1 and only nap for the day and I think us trying to fix his night time sleeping issues using the the cry it out/ disassociate bottle with crib method has disrupted this
Back story. My child was born 36 weeks premie ended up in NICU for 3 weeks after emergency c section it was a terrible adventure that nearly took both of our lives for good. My child has been diagnosed at 11 months with an ultra rare genetic condition called Albright hereditary osteodistrophy, has severe eczema which is managed, cranial stenosis which is pending MRI/CT and multiple other conditions that were still diagnosing and his genetic condition affects everything in the body including hormones, thyroid, bones, height/weight, development etc etc. Mentally speaking my child is 9 months old which is severely developmentally behind by months where he should be. He is not walking yet learned to crawl at 11 months, cruising started 2 months ago and barely just learned to climb last month and doesn't interact with toys utensils correctly yet it's a work in progress. He has an entire team of doctors and therapists that we see regularly. Anyway
My baby hasn't been a good sleeper for his entire 17 months he has been alive. We were successfully getting 2 naps out of him until about 4 months ago when he decided at 1 year he was going to just stop having 2 naps a day and went down to just 1 nap a day. For the past 4 days we have been dealing with an issue where I can't get him to take a nap when I want him to and he will wait until roughly 5 or 6 pm to conk himself out which is now interrupting his bedtime routine.
He doesn't sleep well at night either and we have been struggling for 17 months with multiple wakes ups through the night and his only way he will calm down and go back to sleep is if he gets a bottle of milk.( Most of the time he won't even finish the full 5 oz just takes a few drinks spits it out and goes back to sleep) he knows how to self soothe he just won't and I don't know why. He has access to his unfinished bottles but he can't seem to either find them or doesn't realize they are in there regardless if he is sleeping on a bottle or one is next to him. His GI said at this point he shouldn't be hungry but the milk bottles the only thing that calms him back to sleep. He wakes up roughly around the same 4 times a night usually around 12 12:30ish 2, 2:30ish, 4, 4:30ish and between 7 and 9 is his wake up for the day. Sometimes the frequency veries like sometimes it might be 4 times other times it's 2 times other times it's 7 times. Again all depending on the day. We have tried recreating days where he wakes up less but it doesn't work. When he has had a cold we have been successful with a full night of no wake ups after giving him ibuprofen so we tried giving him a dose 1 time at night for like a week straight ( with doctors permission of course) and that worked for a little while only when he was sick but eventually stopped working and each time he has a wake up he screams bloody murder until my husband or I go into his room and place a bottle full of milk in his mouth.he only allowed 28 oz per day but he is getting 2, 9oz bottles a day and roughly 3 to 5, 5oz bottles throughout the night.
We have tried the following methods to fix this:
Disassociation of bottle with crib.
Watering down his milk bottles to barely milk and mostly water.
Cry it out method which worked horribly because he never stopped crying and we ended up awake the entire time which is now happening again.
We have tried the pick up put down method. Singing and reading a book to him.
We have tried having him sleep with us.
We have had him tested for diabetes insipidus which was negative.
Tried giving him other things to soothe himself with in his crib like stuffed animals, blankets, pacifier is always attached to him day and night.
We have requested a sleep study from 2 different pediatricians he has had and have been denied both times saying that he is too young for it.
We also have a behavior specialist who has no idea how to fix this because she thinks it's a medical issue not behavioral yet his pediatrician says it's not medical ( based off of 1 test) it's behavioral. So the behavior specialist and the developmental specialist both agreed we should retry all the methods and hope one of them work and
honestly nothing we have tried is fixing this problem in fact it's only making things worse.
We were on day 5 of trying the disassociate/ cry it out method and now he refuses to nap at all even after today I stopped going through with the method altogether because he just stopped sleeping at all during the day and would scream for over an hour and a half and that's not good for him.
I'm worried that we have scared him into no naps and it didn't fix his sleeping problem either. I feel like it's just made it worse for us over all at night and now during the day.
Even after I tried reversing course and going back to normal and now even that doesn't even work so now I don't know what to do about all of this. Im a sahm I need that nap time in order to have a small bit of sanity and for some me time and I just haven't been able to have that for the past 4 days now and I'm going crazy.
What do I do should I just accept defeat and just pray and hope that he eventually sleeps or what should I be suggesting to his therapists and doctors to try next.
Back story. My child was born 36 weeks premie ended up in NICU for 3 weeks after emergency c section it was a terrible adventure that nearly took both of our lives for good. My child has been diagnosed at 11 months with an ultra rare genetic condition called Albright hereditary osteodistrophy, has severe eczema which is managed, cranial stenosis which is pending MRI/CT and multiple other conditions that were still diagnosing and his genetic condition affects everything in the body including hormones, thyroid, bones, height/weight, development etc etc. Mentally speaking my child is 9 months old which is severely developmentally behind by months where he should be. He is not walking yet learned to crawl at 11 months, cruising started 2 months ago and barely just learned to climb last month and doesn't interact with toys utensils correctly yet it's a work in progress. He has an entire team of doctors and therapists that we see regularly. Anyway
My baby hasn't been a good sleeper for his entire 17 months he has been alive. We were successfully getting 2 naps out of him until about 4 months ago when he decided at 1 year he was going to just stop having 2 naps a day and went down to just 1 nap a day. For the past 4 days we have been dealing with an issue where I can't get him to take a nap when I want him to and he will wait until roughly 5 or 6 pm to conk himself out which is now interrupting his bedtime routine.
He doesn't sleep well at night either and we have been struggling for 17 months with multiple wakes ups through the night and his only way he will calm down and go back to sleep is if he gets a bottle of milk.( Most of the time he won't even finish the full 5 oz just takes a few drinks spits it out and goes back to sleep) he knows how to self soothe he just won't and I don't know why. He has access to his unfinished bottles but he can't seem to either find them or doesn't realize they are in there regardless if he is sleeping on a bottle or one is next to him. His GI said at this point he shouldn't be hungry but the milk bottles the only thing that calms him back to sleep. He wakes up roughly around the same 4 times a night usually around 12 12:30ish 2, 2:30ish, 4, 4:30ish and between 7 and 9 is his wake up for the day. Sometimes the frequency veries like sometimes it might be 4 times other times it's 2 times other times it's 7 times. Again all depending on the day. We have tried recreating days where he wakes up less but it doesn't work. When he has had a cold we have been successful with a full night of no wake ups after giving him ibuprofen so we tried giving him a dose 1 time at night for like a week straight ( with doctors permission of course) and that worked for a little while only when he was sick but eventually stopped working and each time he has a wake up he screams bloody murder until my husband or I go into his room and place a bottle full of milk in his mouth.he only allowed 28 oz per day but he is getting 2, 9oz bottles a day and roughly 3 to 5, 5oz bottles throughout the night.
We have tried the following methods to fix this:
Disassociation of bottle with crib.
Watering down his milk bottles to barely milk and mostly water.
Cry it out method which worked horribly because he never stopped crying and we ended up awake the entire time which is now happening again.
We have tried the pick up put down method. Singing and reading a book to him.
We have tried having him sleep with us.
We have had him tested for diabetes insipidus which was negative.
Tried giving him other things to soothe himself with in his crib like stuffed animals, blankets, pacifier is always attached to him day and night.
We have requested a sleep study from 2 different pediatricians he has had and have been denied both times saying that he is too young for it.
We also have a behavior specialist who has no idea how to fix this because she thinks it's a medical issue not behavioral yet his pediatrician says it's not medical ( based off of 1 test) it's behavioral. So the behavior specialist and the developmental specialist both agreed we should retry all the methods and hope one of them work and
honestly nothing we have tried is fixing this problem in fact it's only making things worse.
We were on day 5 of trying the disassociate/ cry it out method and now he refuses to nap at all even after today I stopped going through with the method altogether because he just stopped sleeping at all during the day and would scream for over an hour and a half and that's not good for him.
I'm worried that we have scared him into no naps and it didn't fix his sleeping problem either. I feel like it's just made it worse for us over all at night and now during the day.
Even after I tried reversing course and going back to normal and now even that doesn't even work so now I don't know what to do about all of this. Im a sahm I need that nap time in order to have a small bit of sanity and for some me time and I just haven't been able to have that for the past 4 days now and I'm going crazy.
What do I do should I just accept defeat and just pray and hope that he eventually sleeps or what should I be suggesting to his therapists and doctors to try next.
