Crohn's Disease Forum » Parents of Kids with IBD » Prednisone weaning and serious insomnia

04-20-2013, 09:06 AM   #1
Join Date: Sep 2011
Location: Langhorne, Pennsylvania
Prednisone weaning and serious insomnia

My son is 12 and has had CD for 2 yrs. he is being weaned off prednisone because he developed osteopenia and had several broken bones in a short period of time. Although he's down to 5 mg fr 40 7 weeks ago he can't fall asleep until early morning. We've tried melatonin, good sleep hygiene, magnesium. He is also now on remicade since January.
Has anyone experienced this? He hadn't gone to school in 3 weeks fr this!
I wake h at 830 but he still can't sleep in the evening.
I'm open to any suggestions.
04-20-2013, 09:26 AM   #2
my little penguin
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Join Date: Apr 2012

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Is he getting the pred dose in the morning or evening?
We were told morning.
Was he on pred for a long time ???? If so why??

More than a few months .
Once he weans off pred completely he should be able to sleep better a week after that .
Does he stay in bed the whole night?
Watch tv or other source of light before bed?
You wake him. At 8:30 am so when did he sleep from???
What time is he crawling into bed ? Does he see a therapist for worries etc....
DS - -Crohn's -Stelara -mtx
04-20-2013, 09:53 AM   #3
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Join Date: Feb 2012
Location: Canada

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We also had serious issues with insomnia around here. Our issues were mostly when my son was on high doses of prednisone. At that time, I just gave into it and let him watch shows on the ipad in bed. My son struggled with insomnia prior to getting Crohn's but the insomnia on prednisone was a whole new thing. It was crazy insomnia!

Normally to deal with insomnia I have him do all the good sleep hygiene stuff but that is no guarantee that he will get to sleep quickly. Now that my son is feeling better, and not on prednisone, if he has insomnia he still has to go to school the next day no matter how tired he is. I find this tends to reset his clock a bit and makes him good and tired for the next night's sleep.

Another good thing to try would be to let him listen to audio books in bed. This way he is at least entertained while trying to get to sleep and he is not getting the light from the screens that might interfere with making him sleepy.
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-20-2013, 08:19 PM   #4
Join Date: Sep 2011
Location: Langhorne, Pennsylvania
I wake him at 830 so his internal clock doesn't move to much (this happened at the beginning of this as I let him sleep in because I felt bad about him not sleeping at night.
Yes he sees a therapist. He listens to music when not sleeping and will go downstairs when he can't sleep too long. He has had sleep disruption prior probably due to high doses of prednisone but never total inability to sleep for do many hours.
He was on prednisone because he had uncontrollable Diahrrea for too long. It was supposed to be very short as he began 6-mp. But as he weaned down last summer, the severe Diahrrea increased and it became apparent that the 6-mp didn't work. The remicade at a higher dose worked in February.
Has anyone found remicade related to sleep issues?
Tx. This is frustrating.
04-20-2013, 09:43 PM   #5
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Join Date: Jan 2013
Location: North Central, Illinois

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Sheryl, I'm so sorry to hear this. I know it must be really frustrating to your son. Have you talked to your pediatrician regarding sleep meds? Something like amytriptiline has been helpful for sleep in kids and helps with pain too if he has any...
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

Crohn's Disease Forum » Parents of Kids with IBD » Prednisone weaning and serious insomnia
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