Date: 11/08/2021

Q: Do those with ichthyosis tend to need more sleep than average?


  • My son is my best sleeper of the 3. He has CIE.
  • Is there a reason? My little one is almost 9 and has always slept close to 12 hours at a time, sometimes more!
  • I have no idea. He loves sleep. He is almost 2 and gets excited for nap and bedtime! Maybe the routine of bath and bedtime creams is relaxing?
  • I have to sleep more. If I don’t sleep for 10 hrs, my skin gets bad. My eyes dry up and I itch badly all over. I tire easily even after simple tasks.
  • I think the reason is the body is busy producing more skin and that takes up a lot of energy.
  • Good question. I wonder that as well. I need to sleep 8+ hours. Anything less and I feel exhausted. You wonder if our over active skin production takes a toll on us. ??
  • I'm not sure. I know my 9 year old sleeps a LOT. She's never tired but falls asleep fast and will sleep 12+ hours at a time if allowed. She's always slept like this. She has IV. I'm not sure if that makes any difference.
  • I would say it probably does due to addition skin production (like how they generally need more calories) but there are always exceptions! My daughter sleeps terribly and always has!
  • My ichthyosis kid sleeps less than all of us, but he's adhd too??‍??
  • We think our son (4 with Harlequin Ichthyosis) has autism and/or adhd. He is being evaluated soon. The past two weeks no naps and he goes to sleep at 8, continues to sit up in his bed and play for over an hour, tosses and turns, we can see his eyes wide open the whole time, stirs all night long, getting up in the middle of the night causing his gtube to come out. ??‍?? We are beyond exhausted. He used to sleep!
  • We had to train our oldest how to use the dvd player at 2 because we were so exhausted with him sleeping maybe 4 hours at night and having a 6 month old. He also has autism, so it played a huge role in helping us get some relief because all he wanted to do was get up and watch kid movies.
  • My 16 year old has XLI and autism. When he was a toddler he could go to sleep at 10-11 and would be awake at 2:30. He is a normal teenager now and wants to sleep all day, but he doesn't set an alarm and wakes up on school days at 6.
  • I have only ever slept 5ish hours per night
  • Yeah, my daughter has IV and has never been able to remain awake more than 14 hours a day and it’s pure exhaustion. Her brother can get by on next to no sleep. But she’s 10 and is the shortest in her grade level despite being born in the earlier month of the grade level. I think it’s failure to thrive and the body is just expending constantly. I remember there was a current study being conducted on failure to thrive but I experienced it when malnourished as a child and was very tired.
  • My affected son definitely needs more sleep, he gets tired more easily than his sibling. We always put it down the extra colories/energy used for skin turn over.
  • I believe so, yes... Their bodies are working 24/7 to heal itself. My children slept a lot. Also sleep interruption from itching. I always feel so bad about that. ??
  • My 16m old with harlequin is a terrible sleeper. She is my 4th child so I though it couldn’t be any worse, but it is! Ia m so exhausted, I barely keep going.
  • Wow I wish, my 6yo lamellar has never even slept through the night properly yet, always itchy and hot ??
  • We’ve similar issues. It’s difficult. hugs xxx
  • My 7yr old daughter will happily go a good 10-12 hours if she's able to. I wish I could do the same! ??
  • Yes my daughter has IV and she sleeps a lot. She will come home from school and nap get up have dinner shower homework and right back to sleep.
  • My affected child as a teen has slept more, but he wasn’t big on sleeping earlier in life ??
  • Yes! Mine, too! Now, at 20, he finds that a very active 8-12 hour day on the job is so exhausting that some days he falls asleep before eating supper!
  • My son can sleep 12 hours a night at 3 years old. I’m also affected and feel great when I’ve had like 9-10 hours
  • My three year old don’t know what sleep is . ????
  • My 8 year old will have a good 10-12 hours and gets tired easily.
  • I'm 20 and I can work a very physical job for 10 hours on about 3 or 4 hours of sleep. I have been doing this for about 4 years.
  • My 15 year old sleeps less and finds it very difficult to regulate his circadian rhythms. He has EI, dyscalculia and dyspraxia diagnosis.
  • Yes, my 14 yr old could sleep 10/12 hours.




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