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8mo DD, having chemo, advice about poor sleep - where do I go now?

(14 Posts)
titferbrains Sat 30-May-09 11:35:52

DD diagnosed with cancerous tumour on kidney 3 wks ago. We were in hospital for a week and she kept to a reasonable pattern of 1030 dream feed and 3amish feed and then waking 7ish. Sometimes a 2nd feed at 5.30 ish but always went down pretty well.

WE put her down awake at 7.

Since we came home, her sleep is all over the place, and inthe last week she's been up for 2 hrs every night, usually from 2 or 3 till 5/5.30ish. She feeds at 2ish, then falls asleep in my arms, I put her down asleep, she wakes and cries, I pick her up, she calms down, put her down awake but calm, she stays quiet for abit then starts singing, then whinging, then crying. I feed her on and off for 2 hrs, I hold her, etc

She has just had her 3rd chemo treatment.

Any thoughts on anywhere I can go to talk to people with babies having chemo/long term illness and sleep issues? Potentially, she'll have chemo for another 3-6 months so I have no idea whether to look at usual advice for sleep problems at this age or to indulge her/give her all the boob and cuddles she needs because I don't know if she's feeling sick etc IYKWIM.

Very hard because she can go to sleep on her own but has got into this rhythm of staying awake for 2/3 hrs. Which is killing DH and I, as we cannot sleep as long as she is awake and whinging in bed with us or inher cot.

Any thoughts at all? Sorry for long post.

Saggarmakersbottomknocker Sat 30-May-09 11:44:52

Oh gosh - I'm sorry to read about your dd's illness titferbrains. I hope her prognosis is good?

My gut feeling is to indulge and go with offering as much comfort as possible although I do know how hard that can be. My dd spend lots of time in hospital in her first year and always came home with her sleep patterns disrupted. Add to that pump feeding at night etc and we all ended up looking like zombies. It's very hard. Do you have any other support at home other than dh, so you can get extra shut-eye during the day?

titferbrains Sat 30-May-09 11:57:25

WIll have to look into getting help. Hard tho as she's getting a bit wary of strangers now that she's seen so many nurses/docs etc so don't want to create stress for her that way. All the friends I have who know her best have kids so can't really call on them!!

SHe has had a feeding tube fitted so I'm really hoping that will help. At the moment she's still going thru the vomiting stage so we haven't got the amounts right yet. Shd be better over next 24 hrs.

wb Sat 30-May-09 12:16:41

Honestly, I think in this situation you should do whatever you can to get through. Perhaps it would be a good idea for you and your husband to take turns sleeping in the spare room/on the sofa so that at least one of you has had some sleep, whilst the other one stays with dd. Take opportunities to sleep when possible during the day and accept that other things (like cleaning) can wait. Be comforting but dull to encourage her to sleep but if she is feeling unwell and is having her routine disrupted by hospital stays you may have to accept that her sleeping will be shot for some time to come.

Whatever you do don't feel you have to have her sleeping through cause that is what some book says. Ignore any 'rod for your own back' advice also - this can and will be much easier o sort out when she is well again.

As to where you can find others in your situation to talk to about babies and long-term illness, I found this quite difficult. In the end I went to an internet forum run by a charity which offers advice and info on ds2 condition (craniosynostenosis)-do you have similar available to you?

Saggarmakersbottomknocker Sat 30-May-09 12:17:28

The strangers thing is normal at around that age isn't it but I agree they can get a bit wary; expecting everyone to be prodding and poking them.

Does she have an ng or g-tube? If it's ng I found putting the feed down ^really slowly^ was best at first. The tube can irritate the gag reflex a little too but that usually settles once they get used to it. And the good thing is you can feed without waking them up if you're careful.

You will be able to claim DLA (I think you may have to wait 3 months?) and you could use that to help fund some extra help - maybe to help with the domestic stuff to give you a break from that.

wb Sat 30-May-09 12:19:49

Also to add: think again about asking your friends - maybe they could have her for a couple of hours during the day (in your house even) so you can go upstairs and nap. I'm sure any good friend will really want to help and would probably be pleased to be asked.

titferbrains Sat 30-May-09 12:22:42

ng tube. Will try doing feed more gradually this time.

There are millions of cancer charities/orgs for children but I can't find much info for babies with cancer. Am scared to look very hard on the net as I don't wnat to read any sad stories.

Saggar how long did it take yr baby to get used to tube? AT the mo I'm sittinbg with her for at least 45 min after feed as she is gagging/retching every 10/15 min or so.

titferbrains Sat 30-May-09 12:25:58

Also our house is unusual design and it feels like we can hear her no matter where we sleep! but will put hubby as far away as poss on sunday night in hopes he can get decent sleep. He has been such a hero thru this, I just love him more and more. Thank god we're keeping each other steady thru all this.

likessleep Sat 30-May-09 15:10:12

oh titferbrains, am so sorry you and your dd are having to go through this.
have the hospital not suggested some places where you can get some practical advice?
wishing your dd and you all the best - virtual hugs

Saggarmakersbottomknocker Sat 30-May-09 15:20:19

titfer - probably a few weeks I'd say before she was really used to it - and then the little madam used to pull it out every 5 minutes! She was refluxy anyway though so the gagging continued but she tended to bring less up each time.

I've had one myself and they can make your throat feel pretty scratchy. How big a feed is she having and how often? Or are you just 'topping' up? dd was having tiny feeds - sometimes just 10ml an hour which was why she was on the pump overnight.

I think you do right to be wary of some websites - you can get quite depressed reading less than positive stories. Glad you and your dh are supporting each other though - that can be a battle in itself sometimes because they often handle things differently.

titferbrains Sat 30-May-09 16:20:48

thanks saggar

thankfully bandages are quite ingenious and she hasn't tried to touch it really, in fact she gets upset if anything touches it.

we are going to give anti-sickness meds tonight as it may be chemo contributeing to sickness as opposed to ng tube/rich feed.

she's having 100ml 4 times a day.

really hope for a better night tonight.

Shylily Sat 30-May-09 21:10:01

Hi titferbrains
A friend of mine's little girl started treatment for leukemia at 14 months. She said they find her sleep is most disturbed by the steroids rather than the chemo. I don't know enough to know if your child will also be having steroid treatment - is she?
They said the sleeplessness lasts about 10 days (treatment plus a few days) each month. They just have to ride through it - one of them usually sleeps with her in a double bed in the spare room and the other with earplugs in their room as she screams.

If you're really desperate and want outside help, I just used Andrea Grace, sleep consultant for my DD (10 months) (although not because of health problems). Andrea is a specialist health visitor and now does sleep consultancy. I understand that she often consults for people who have children with illness. She'll speak to you first and work out if she thinks she can help before doing a full consultation.
Good luck. You really need your rest.

titferbrains Sun 31-May-09 09:46:47

THanks shylily we will see how she gets on with the tube. WE had a better night last night - she actually went to sleep after her feed at 4am.

Will give the tube a chance and see if it helps her get into a better sleep pattern. Don't want to waste Andrea's time - what a brave job!

titferbrains Sun 31-May-09 09:46:48

THanks shylily we will see how she gets on with the tube. WE had a better night last night - she actually went to sleep after her feed at 4am.

Will give the tube a chance and see if it helps her get into a better sleep pattern. Don't want to waste Andrea's time - what a brave job!

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