I need some experienced mummy opinions please!

So DD is almost a year old.  She has a history of bronchiolitis including one admission to hospital when she needed oxygen and a feeding tube when she was about 6 months or so old.  She took a while to start drinking fluids again at that stage but then was okay.  Since then we've had another three admissions including one for fluid refusal and she had another feeding tube.  She held out for about five days before she would take a bottle that time.  She's had surgery for grommits - very uneventful - in early Oct.  Right since the first bout of bronchiolitis she has seemed to have big reactions to the most simple of viruses.  DS will get a two day cold and DS get a full on viral rash, heavy cold for a week and refuses to feed.  Each time I offer multiple options for fluid (including jelly, icecream, juice, water in the bath etc etc etc) and hide fluid in her solids.  We spend a week focussed on keeping her hydrated enough to stay out of hospital.  It normally works but only just.  Some weeks we are at the GP / after hours / hospital every couple of days to make sure she is still okay.  The baseline expectation keeps changing - I've been told to bring her in immediately if there are no wet nappies in several hours, or if she won't take 20-40mls per hour (depending on the Doc this amount varies).  Basically she is taking less than the 20mls an hour and has dry nappies and still isn't deemed clinically dehydrated because she will isn't floppy and listless.  They are now trying to tell me that to refuse fluids every couple of weeks to the point of dehydration (but not dehydration requiring intervention) is normal behaviour in this age group.

I don't buy it.  In talking to friends this isn't normal behaviour.  So what I want to know from you guys is:

Would you be pushing them to look for something else?  Even if it is behavioural rather than an illness as such?

Who would you be talking to?

And do you think this sounds normal?

I am struggling to cope because I am the only adult in the house and though ex DH is semi helpful he really only takes DS when I need to take DD in to hospital for hours / nights.  Our entire lives come to a halt when trying to push fluids (though I must admit I am starting to go out and do things anyway just to keep myself sane) and poor DS really misses out during these periods.  I end up feeling a bit useless really.

So...please...any advice would be great.  While I trust in the medical profession to a point, I trust in parental experience just as much and I'm not getting the answers I'm wanting just yet.

(Sorry for the super long post!)

Hi, gosh it sounds like you've had it rough the last 6 months!   I can't offer much advice, except to say I would probably look into it further, but with who I'm not sure either.  Perhaps a paed?  She might also be getting just enough to stay hydrated through the foods she's eating.  Some toddlers I know don't seem to drink much fluids but are still active enough etc.  

Oh and don't feel guilty about having some time out.  Sounds like you need it if you're parenting solo at the moment.  You need time out so that you're rejuvenated and on the ball for your kids.    

I hope you get it sorted soon x

We're in Wellington - and I've just discovered that the Medical Practice we are with is great!!  I had a call from them this afternoon asking if I wanted to come in to have her reviewed and have a discussion about it.  I half expected them to suggest it was all me but they didn't at all.  Apparently there are random children who do this and it's not normal but it is by no means completely unheard of either.  It sounds like they fully expect that this will continue to be an issue in the near future and that we just need to manage it as best we can.  We've agreed on when I will take her in to see them and what sorts of times in the day to ensure that she is hydrated enough to make it through the night etc etc so hopefully that will go some way towards making it a little more manageable.  When she's like this she has days when she doesn't eat either so I'm never sure whether she will be safe overnight or whether I should be waking her to try and feed her.

I'm so relieved to know that they don't just think that it's me doing something weird!

Thanks guys.  Kimnthekids the whole going off food thing does seem much more normal to me too.  I wonder if it is just that she associates even mild pain with the experience of the feeding tube - though I did think she would have been too young at that stage to have made that association.   I also wonder whether I am looking for answers where there are none.  At least we seem to be over this bout of whatever it is!!  Time to enjoy the relative normality until next time eh?!