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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

being sick at bedtime

34 replies

kreamkrackers · 05/01/2006 22:54

just started this in the health area and was adviced to come here. my dd is 20months old. she's recently started being sick when going to bed. dp says she forces herself to be sick. she is peg fed for 12hrs at night and is on 30mls/hr, although it should be on 40mls/hr. she has severe reflux. brings up all her medicines when she's sick. has to have a bath as she has long hair that i've tried to stop it getting into but it never works. the routine has been the same for months but she now cries when going to bed. if i wait until she's asleep to switch the pump on she wakes up when i enter the room (i think she senses me being there). i just don't know what to do anymore.

OP posts:

chonky · 06/01/2006 18:53

bump

Davros · 06/01/2006 18:57

Hmmm, sounds like she doesn't like the peg/feeding overnight poor thing. I don't know anything about reflux and peg feeding I'm afraid. I hope someone else will come along soon with some good advice/experience. Have you talked to Dr/nurses? Maybe something to get her to relax at bedtime would help. Sorry to read this, it sounds awful for all of you

dizzy34 · 06/01/2006 22:12

Hi, my ds2 is peg fed and is fed through the night with a micro max feeding pump. He has severe reflux as well. Has she had the op that can stop reflux. There are two ops. one is fundoplication(sp?), but gastro docs have told us that ds2 would need the more complicated op...prob got this spelling wrong but i am sure it is called a biankey (bee ann key) or nissan key. Ds2 is on losec mupps 10mg twice per day and mottilium (domperidone) 5mls four times per day, and this is actually controlling his reflux quite well. our problem is that ds2 vomits during his seizures and he can have up to 150ish per day. Does your dd have sleep meds? DS2 has clhoral hydrate which is fab at getting him asleep and keeping him asleep, would this be an option for your dd, even if it is just to get her in a routine of being fed at night again so she gets over her fear

getbakainyourjimjams · 06/01/2006 22:21

I don't know anything about peg feeding, but this sounds a nightmare. Is there anything she can have to help her off to a deep sleep so she doesn't wake up and gets out of the routine of being sick, poor thing.

chonky · 07/01/2006 10:28

I should have said, my dd is on Losec omeprazole and domperidone too, and it does seem to be controlling her reflux a lot better.
She still has her vomiting moments sometimes, but it is much better than it was.

Original poster

kreamkrackers · 08/01/2006 10:32

she is on domperidone and ranitidine to help with the sickness. i will have to talk to the doctors about getting her on to sleeping medication. she might be getting her peg changed to a mickey button soon so if they can do an operation to stop her refluxing then i'd prefare them to do this for her at the same time if possible. she will often end up in hospital through being that sick that many time she dehydrates. she also has major cardiac problems.

OP posts:

dizzy34 · 08/01/2006 11:01

Hi ds2 was on ranitadine, but this was changed to losec mupps (omiprezole), and the vommiting stopped. DS is also having his peg changed to a mickey button this month. what is her condition? Do you have suction facilities at home for when she vommits? We find that helps alot as well.

dizzy34 · 08/01/2006 11:02

Hi, forgot to add that our community pead nurse specialist has been great and she was the one that told me about the clhoral hydrate. To be honest if her sleep problems are really bad you may find that vallergan doesnt work very well or that it doesnt work for very long.chloral hydrate works quickly and for the night

chonky · 08/01/2006 11:32

ranitidine made no difference to dd at all either.

dizzy - does suctioning help stop aspiration?

dizzy34 · 08/01/2006 13:10

Hi chonky, suctioning has stopped most of ds2s aspiration. we just have to get to him quick enough. we have different sized suction catheters, but generally we suction ds nose mostly as he had nasal aspiration. it is also good when he has a chest infection because we suction all the mucus of a morning and this encourages him to cough and sneeze the rest up. It is portable and comes in a carry bag so we can take it everywhere with us.

chonky · 08/01/2006 13:12

Sounds like another piece of kit for us, will ask the paed next time. Not that we want more kit BUT DD has has 4 hospitilisations in 05 with chest infections - however no-one's suggested suctioning. If it helps get the catarrh up it would be well worth it.

chonky · 08/01/2006 13:13

Thanks too dizzy

Original poster

kreamkrackers · 08/01/2006 14:47

thanks dizzy, all that advice sounds great. we don't have a community peadiatrician nurse in our community. i'll call my health visitor tomorrow and see what she suggests with all this. dd is also in and out of hospital with recurrent chest infections so the equipment would be really handy for us.

OP posts:

dizzy34 · 08/01/2006 15:48

Cant believe that you dont ahve a nurse specialist......, i thought all child development centers had them? Where are you from? They tend to be a bit more pushy than the health visiters and because they understand the sn conditons more, they seem to have more sway. Do you have a physio or anything like that? Our child development centre deals with all our equipment at home and we were given two suction machines incase one stops working. Anyway, im sure your HV will know what to do....and dont be fobbed off with waiting ages for them, if your daughter has a peg tube she obviously has problems with swallowing so should be a high priority and it certainly makes life easier for me and ds. let me know how you get on

Original poster

kreamkrackers · 08/01/2006 20:39

we're from runcorn, cheshire. we used to have a nurse but she's left to become a health visitor! the cdt have been very useful, they liase with our portage worker. we also have physio and we're waiting for the speach therapist to get back in touch with us as we've had a video xray done on dd swallowing and she is now able to swallow liquids. also she gags easily on lumps so i want to see what she can suggest about ways to get her to chew her food.

OP posts:

dizzy34 · 08/01/2006 21:04

Hi, guess what? im from widnes and there are two new nurses. Michelle and Denise and they are both based at woodview cdc. They come out to see us regulary and i can ring them when i need to. What hospital are you at? My ds attends Alder hey. DS had the videofluroscopy which showed signs of nasal aspiration, but with his condition he just lost the ability to eat and drink when he was 10mths old. Do you see the speech therapist from the cdc with regards to your dds swallowing?

dizzy34 · 08/01/2006 21:04

sorry just seen what you said about the speech therapist.

Original poster

kreamkrackers · 08/01/2006 21:23

that is strange! well i'll give woodview a ring tomorrow and request a nurse to come around and see us. i'm surprised they didn't inform us about the nurses seems as we virtually live in alder hey most of the time and could do with the support when we're home. oh well, thanx for letting me know.

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dizzy34 · 08/01/2006 21:37

we go on ward d3 most of the time but have been really lucky and not been in much this year, fingers crossed. He has an infection at the moment and is having lots of seizures today but we are coping. good luck with woodview

Original poster

kreamkrackers · 08/01/2006 21:41

we were on d3 just before xmas. dd was put on there with a chest infection as k2 ward was full. i was a bit upset as i like to see the staff on the k2 ward and talk to them but all the staff on the d3 ward were lovely so it didn't make much difference which ward we were on in the end.

OP posts:

Helen139 · 09/01/2006 14:15

hi hun noticed u were talkin about sickness meds see if ur doc will change her meds to omeprizole we used to have that and it really does work better than any other x

dizzy34 · 09/01/2006 19:20

Hi kreamkrackers,

omeprezole and losec mupps are the same, but losec mupps disperse better in water so they go down the peg easier

Original poster

kreamkrackers · 09/01/2006 21:11

is it suitable for a 20 month old? she weighs less than 9 kilos.

OP posts:

dizzy34 · 09/01/2006 21:30

Harry was 10mth old, not sure what weight but i think it is ok for little ones. Which gastro doc are you under at Alder hey. we see Mr Cassin at the joint reflux clinic

Original poster

kreamkrackers · 10/01/2006 09:55

we see dr darzel (don't know how to spell it). we see him in the cardiac feeding clinic which has a big team of people there to throw questions at us (the same as the cleft team!). the dietician said she'd make an appointment for us in december to see the team again but i'm going to have to give her a ring as we've still not heard anything. i don't know how long it takes to get an appointment for his clinic but i was hoping to have some news by now.

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