Sleep Issues Getting Worse — The Bump
Special Needs

Sleep Issues Getting Worse

For the past 3-4 months (and getting worse by the day), Charlie has been getting up in the middle of the night and running into our room in a full on panic - shaking, staring off, completely unintelligible crying. We ask what's wrong and try to talk to him calmly, but he never says anything helpful. We put him back in bed, and sometimes he stays, but most of the time he's back in an hour or so. It always starts about 3 - 3 1/2 hours after he goes to bed, so right as we're going to bed. I'm at my wits end. :(
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Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

Charlie DX Specific Antibody Deficiency & ASD

Re: Sleep Issues Getting Worse

  • First rule out anything outside his control ( Is a neighbor coming/leaving and waking him, is his tummy hurting and you need to adjust dinner possibly reflux, is he having nightmares/anxiety attack, etc)
    If you rule out stuff he can't help or needs legit assistance with then it is likely behavioral and I would go with sleep training if his team (assuming he has someone in the behavioral field) feels it's appropriate and with their guidance.
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  • -auntie- said:
    Sounds like garden variety night terrors. The timing is pretty classic.





    This. DD1 used to get them if she got too warm while she was sleeping.
  • Holy moly, timing is perfect in his sleep cycle. Okay, that makes sense. Still stinks, but makes sense. For some reason, I thought kids got night terrors younger (like 2-ish). Thank you!
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    Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

    Charlie DX Specific Antibody Deficiency & ASD

  • -auntie- said:
    He's the right age for onset as well. Peak onset is 3 1/2 to 4. 

    My sister did this as a little kid- they can be scary and inconvenient. He probably doesn't remember because he's still sort of asleep, so talking with him is kind of pointless. She did outgrow them by about 5 or 6.
    Most of the time, once we hug him or pick him up, he passes right out. Definitely weird and a little scary! I hope he outgrows it. During the day, he complains that he's "so tired," but we're not sure if that's a mimicked phrase or he's actually tired. 
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    Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

    Charlie DX Specific Antibody Deficiency & ASD


  • McRib said:
    Is he staring off in an absence seizure sort of way? If so you might consider an EEG. A MAPS doctor could help you figure this out. Night wakings for us were medical. Food intolerance, GI problems, infections and elevated liver enzymes all contributed to this. I don't buy that kids with ASD don't sleep well. I believe something else is going on and looking deeper has served us well since DS now sleeps soundly all night long. He would wake in a similar panic state at 1 and 3 most nights.
    No, no not really like that. Staring off like he's either still asleep or his normal 'doesn't look at us when we're talking to him' kind of way. 

    As a Christmas miracle update - he slept through the night last night for the first time in literally weeks. Today was pretty overwhelming and he did a lot of running and jumping and ripping paper and rough housing with relatives. I'm curious to see how he sleeps!
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    Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

    Charlie DX Specific Antibody Deficiency & ASD

    [Deleted User]
  • You already received some good advice. I would speak to your Pedi about it as ours told us to make sure DS1 was getting enough sleep because an overtired child has more chances of having a night terror. We found that true to DS1. 

    We were also told that since he was having them at a specific time in his sleep cycle, his were 3ish hours after falling asleep, we could try to wake him up right before he would have it. This would stop him from having it and he would just start his sleep cycle over once asleep again. We actually never tried it as DS1 only had them a few times a week so I was always worried we'd wake him on a night he would have been fine and now he doesn't have them often but thought it was worth a mention. 
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