being sick at bedtime

[kreamkrackers]

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.

Hi, ive heard of him. We have been able to ring Mr cassins secretary and ask when the appt will be, can you do that? our dietician in alison terry and she has been lovely, ds is on the keto diet. DS goes to the joint reflux and nuerology clinic. Who will you see about prescribing the sleep med? Our main consultant at the hospital is a neurologist and he prescribed ds.

our main consultant is dr peart, he's a cardiollogist. he's explained dd's heart to me really well as it is very complex, infact the operation she's had to repair her heart is a unique operation. i understand the operation but i can't explain it to family or friends. our dietician is lisa, she's been great. we don't have a direct number to dr darzel, i'll have to give the hospital a ring and i'm sure they can put me through to his secretary.

I bet the operation must have been nerve racking for you, we are 'lucky' in that respect cos he hasnt needed any operations (except his peg tube). There was a little boy on d3 with ds condition when you were in. Can your dd walk, talk etc. we rang alder hey reception and just asked for mr cassins secretary, they were really helpful, you learn to be really cheeky when you have a child with sn dont you?

she can sit unaided and has just started rolling over. she can stand with support for about a minute. she has noisy breathing all the time but gets out of breath easily. she snores loudly! don't know whether it's because of the cleft in her soft pallot or the heart condition. she can say "hiya", "hello", "what's that", "all gone", "mama", "dada" "ahh dogga"(the dog), "baba" and understands a lot of words . the operation is something i try to block out of my head, i can talk about it fine most of the time but i feel it was a different baby we helped through them operations (i probably sound crazy!). i brake down at points thinking about what she's been through and there's more to come, but hopefully no more bypass for a couple of years. i'm sure most people on this board feel similiar to me when i see people with their children not realising how lucky they are to have healthy children (or maybe it's just me thinking what life would've been like if she didn't have these problems)

i know what you mean.....i work with parents who have abused their children and it gets on my nerves. in fact my first job after mat leave was an adoption of a baby the same age as ds, his mum had used heroin through the pregnancy and he was fine. i never took anything, not even paracetamol..........lifes a bitch isnt it. DS has his first 'serious' op in march. He is having a general anaesthetic in feb so that he can have the new MRI scan at alder hey. and he is having his mickey button done in jan hopefully. How old is your dd, my ds is 2.5yrs.

she's 20 months. i never even took paracetamol, i didn't want to hurt my unborn child in anyway, but i did have a lot of pain relief in labour! i played classical music all the time whilst pregnant to help with brain development, i sang to her and read stories (i went a bit nuts wanting the perfect healthy child - probably all the hormones!) she is a fantastic little girl, she's so happy most of the time. i was upset when she was in hospital as i planned on bf her and although i expressed and it went down her ng tube she kept losing weight so she was put onto infatrini. she's now on nutrini with the multi fibre as she has problems with her bowels, she's also on lactulose and has glycerine supposeteries as well. i didn't find out anything was wrong with dd until she was 3 days old. she went very weak, wouldn't bf, was cold and pale and her eyes were rolling around to the back of her head. we took her into warrington hospital, she'd been born in the liverpool womens. the nurse was telling me there was nothing wrong with her. then she collapsed and a team came in and we were asked to leave. a team from alder hey came to take her away. she'd gone into shock and was in multiple organ failure, we were told to prepare for the worst. the reason she looked so healthy when she was born was because of a duct that everybaby is born with closes up on the third day and this is when amelia became ill. it took two weeks to build her up for her operation (they gave her drugs to keep the duct open). we seen the liver and kidney specialists. the cardiollogy team helping dd went to birmingham to discuss dd's case, this is where they agreed to do the unique operation that stopped her neading a heart transplant at around the age of 1. she swelled up that much after the operation that her chest was left open for two weeks (that's why i think she has very weak arms). but she's recovered well. she's had cardiac catheatre procedures and another bypass operation in july. but she's doing really well - to look at her you wouldn't think she's been through so much. i am so over protective of her and i don't care if people think it might be bad parenting as i can't help it with everything she's been through. what is going to happen to your ds in his operation? it's weird how well children recover from operations. i really don't think i could cope as well as dd but i wish it was happening to me instead.

HI, We didnt find out anything was wrong with ds until he was 6 days old. He began 'twitching' his arm, the next his leg and head as well, by the 3rd day he was twisting to one side and pulling strange faces. i knew in my heart of hearts that he was having seizures, i even looked it up in my 'emmas diary'. we took him to alder hey and within a couple of hours he had a ct scan, ultra sound of the brain and an eeg. we never went home for weeks then. he has now had numerous eegs, 3 mri scans, all metabolic and chromozone tests, skin biopsies, muscle biopsies and they are all normal. except the eeg. he was diagnosed with epilepsy at 13 days old roughly. he was put on epilepsy med and had about 400 fits that day, they just never stopped. we have had about 15 epilpesy meds, none work and most make him worse. he still has up to 100ish seizures some days. we found out in the august time that he had a very rare epilepsy syndrome that means he is quadriplegic, cant hold his head up or hold anything, he is reg blind and cant eat or drink. he also has bowel probs and is on suppostorties now cos the lactolose didnt work. We also have nutrini low energy multi fibre to add to his keto diet. I look at him sometimes and feel so sad that he will not have a normal childhood/life. i think i grieve for the life he should have had. but i love him to bits and wouldnt swap him for the world. i am very protective so much so that i dont think he will be going to school,as i havent found one that i trust or like. plus his development is assesed at 8-12wks so whats the point. i would rather he be at home with people who know what he likes and doesnt like and where he can be pampered.

yeah i agree with you, he is best being in a lovely environment. my dd occasionally goes to zoe's place so i can have a break, we usually just go the cinema when they mind her for us. alder hey are always brilliant, we're going there tomorrow to see the the cleft team.

do your family help much? mine don't ever help me out. they're all too stuck up in their own lifes, they hardly come to see us when we're in hospital. my step-mum is the worst one though, if i'm at their house she smokes in a different room than dd but smoke travels through, so i nolonger go around there. i pulled her up over smoking next to her outside one time as i went the toilet and there it was a lit cigarette in her hand when i came back. she told me smoke goes away from her outside but it doesn't. sorry just in a bit of an angry mood at the moment.

anyways dd does get offered three meals a day but somedays she might not eat a thing and other days she'll manage to eat two good meals. it must be hard for you to see ds going through that everyday. my dd is doing remarkebly well despite everything she's been through, it's hard to believe she has been through so much, but it does hit me somedays. my dp said something to me that made me feel better, to dd she doesn't really know any different, she doesn't realise other babies don't go through surgery and that is why she copes so well because she doesn't realise. it's still so hard though when she goes down for the big operations. the peg insertion didn't bother me one bit as it's such a simple proceedure compared to what she's been through. she also has extra digits that need removing and that doesn't bother me one bit i just want that over and done with. hopefully there might be new epilespsy drugs in a few years time that would stop your ds having seizures.