Broken sleep driving me bonkers!!

[Stephyjane]

Does anyone elses children suffer with broken sleep. For the past 3 weeks or so my daughter either can't get to sleep or wakes up because of abdo pain/clicky joints etc Eventually she settles down an hour or so later, but then I can't get back to sleep, so lay there silently going crazy..:ybatty:
I need my sleep and find it hard to function without it, I hate being grumpy as well.
Any tips??.....please

 

[Amy2]

Can she crawl into bed with you without waking you? Can you set her up with a way for her to distract herself, until she can go back to sleep? When my son was feeling his worst, his Nexus Tablet helped distract him from his worry and discomfort, until he could fall back to sleep.

 

[Dexky]

If she's waking due to pain, I hope that's soon resolved. I'd hate to try to force her to sleep thru pain...but if she just can't go to sleep due to some other reason, you may try Benadryl. My son takes it before his Humira shot each week and it always knocks him out. I'm sure if there's a reason she shouldn't take it, someone will pipe up. I know you hate to give her any more meds but proper rest is very important for healing as well. Good luck!

 

[my little penguin]

Do not give Benadryl without a doc advising you to for your child.
It can cause drowsiness but it can also cause your child to never wake up again ( death).
More than one young child ( mostly toddlers) have been brought to the ER dead due to parents who just gave Benadryl to get there child to sleep.
The drowsiness effect also tends to wear off after you have been taking it for a while.
The body gets used to it.
It also is a first generation antihistamine so it crosses the blood brain barrier .
We have had to use it for DS since he was tiny for allergy reasons but the docs have us use it sparingly due to this reason.

You need to talk to your Gi if your child is waking up in pain in the middle of the night from sleep. DS has this and we are trying to work out a solution with the Gi .

 

[my little penguin]

http://www.childrenscolorado.org/wellness/info/news/51505.aspx

The authors also point out that although the parents in this study did not report it, the drug could cause low levels of hyperactivity that could affect infants' sleep

 

[my little penguin]

But it should not be used routinely for sleep even in older children, he said. Its effects can be unpredictable.

Experts agree diphenhydramine should not be given to a child as young as 5-month-old De'Arron Deshazier of Tampa, who died Aug. 1. Before age 2, the drug can have unpredictable or even toxic side effects, said Glenn Whelan, a doctor of pharmacy and assistant professor at the University of South Florida.

From:
http://www.tampabay.com/news/health...-practice-of-medicating-kids-to-sleep/1191735

 

[Johnnysmom]

That was why we put a TV in my son's bedroom.
He was on prednisone and would wake in the night and have a hard time sleeping.
A heating pad he could turn on himself helped with the cramping pain.

The good news is it only lasted a few months and it passed.

The TV in the bedroom is something we always said we were totally against. But, sometimes you just have to do the best you can! My son has been very good about not abusing it and looking back it didn't turn out to be a big deal and really helped us get through a difficult time.

Hope you get some sleep soon!

 

[Mehita]

Waking up due to pain should probably be addressed with your GI.

Both of my boys are in a "can't sleep" phase right now and they just turn on a light and read in bed until they're tired again. DS is on prednisone and he's gone through four books this week!

I'm curious to know what your doctor says though. Ours gets very concerned over sleep because that is the body's natural time to heal and recover.

 

[Stephyjane]

Thanks guys.
Ella is waking up with or not going to sleep because of pain/ nausea clicking pain in knees etc. She will come in with me but normally we sit and talk through it, I give paracetamol when I think it's needed but it doesn't really do anything, I find distraction works best. But the middle of the night is the worse time. Ella then eventually falls asleep as she is so tired and my mind is too busy to switch off as I end up googling and trawling the forums for answers.
Ella had benedryl for years for Allergic Rhinitis but I would never dose her to make her sleep. It didn't make her drowsy really anyway.
I've been keeping a food diary for quite a while as I think Ella's abdo pain in linked to certain foods, we are awaiting the results of her MRE to rule out any narrowings.
Is a heating pad the same as a hot water bottle or something different?
I've got a sleep eye mask for Ella to try tonight, who knows it may help. Perhaps I should have got myself one too!!
School goes back in just over 2 weeks and Ella goes up to secondary school which will involve a school bus and a much longer day. I was really hoping we would be in a much better place by then. Mornings are hard.
It's really upsetting when these are the times that children should be carefree and enjoying school without feeling like this.

 

[Twiggy930]

We let my son use a iPad in bed to watch movies when things were really bad. As was said previously we were totally against tv watching in bed but I didn't see any harm in it when the alternative was lying awake in pain. Hope this passes soon for both of you.

 

[Stephyjane]

Since Ella has been back on Infliximab her calprotectin has gone from 1020 to 98, so Ella's GI says her pain is no longer 'Crohns related'. It's very frustrating, I actually think they get fed up of us always having problems so I'm trying to handle it at home. I've even asked Ella if its real pain, and not to say she's in pain if she isn't. Then I feel awful for not believing her.

 

[Niks]

I know how that feels, thinking that the Doctors think you are always having problems! It is a tricky line though, not wanting to keep on at them and also not wanting them to think all is okay because you haven't been in touch!

J is much older and handles it herself, but still hear her up and about trying the bath, getting heat pads or hot water bottles.

Have you tried a hot bath? Relaxing and can help with aches and pain. Sometimes J will get in several times throughout the night. You can get heat pads at boots or even supermarkets. They stick on painful areas and generally hold heat for up to 12 hours. Great for sticking under clothes and you can pop them in a bag to take out. At night may be helpful too?

Good luck. Lack of sleep makes everything seem so much worse :ghug::ghug:

 

[my little penguin]

We were told to have them rate the pain - 1 to 10 so you can track it.
DS has alot of stomach pain nausea etc...
His fecal cal is 77 so close to normal.
But he is still having a scope soon.
In his case his rectum is thought to be inflamed ( proctosigmoiditis )which is causing the stomach pain nausea constipation tenemsus etc...
Last year had the same thing and we were told not crohn's but no one checked the rectum since he wasn't bleeding .
Rheumo also told us after being inflamed for so long the gut is still twitchy even when the inflammation goes down then it slowly calms down .
It did for DS after being on remicade for 7-8 weeks.

 

[Stephyjane]

Ooh I'll have to get some of those heating pads. The only ones I've seen are the ones with Nurofen in and we obviously can't use that.
What I find now with Ella is that it's no good going to the GP or out of hours drs as they can't really help. So if I consult the GI he makes me bring Ella in to be reviewed on the ward where we see a dr that we haven't met before, have to start basically from Ella's birth to eventually after several hours told to up the Movicol or try paracetamol. By which time Ella is so fed up and I'm extremely frustrated as its a total waste of a day. I just wish there was consistency and communication between the drs.
Niks I think I would be going totally crazy if I were you and our issues at the moment are nothing compared to what u and Jaime are going through. I really pray things turn a corner for you xx

 

[kitty t]

My daughter is currently having lots of nighttime cramps, mainly wind but I am similar finding it hard to fall asleep again :-( I have recently done a course in mindfullness and find that can help me still my thoughts. Lets hope we all get more sleep soon x