Sick again - more time in RCH

This year my little miss has been so sick - nothing serious (although things have been questioned thankfully all ruled out) but constantly ill.
On wednesday she stopped eating. On Thursday we went to Disney on Ice and came home today via RCH, during the show she completely lost the plot after a cracker went off and I was unable to settle her, so went to ED.
Anyway, Friday we saw so many doctors, we didnt leave her bedside all day, we had a continuos line of specialist from 10am-4pm. They all had there say on how to get her eating and how to boost her calories when she is eating (most of which I have tried, but I am prepared to listen to anyone who might have the key to getting food into her). The dietician started the discussion of getting a PEG feed (which I think we need but am hesitant, after all every surgery has its risks). For now we have multiple powder supplements to add to all food/drink.
She started eating last night and today once she had eaten three full meals and drinking well I decided I wanted to bring her home (the doctor had decided it was up to me if I wanted her in or bring her home). We slept for the first 4 hours then I got up made dinner for us both and went back to get her out of bed to find her vomiting all over the bed.
I spoke to the hospital and we decided she must have picked up a bug in the hospital, but she has once again stopped eating.

I feel like I cant win with her, I do everything I can to try and get her to eat, she cant afford not to eat, she is only 32kg and 150cm tall, which makes her too skinny for height/weight ratio. I assume she is so frequently sick because of her low weight but until we get the point of getting the PEG I am getting to the end of my tether and dont know how much more I can handle of this pattern of eating (or not eating) and illness. She already looks anorexic (one friend has been telling me that for over a year and finally I see it). It is getting to much.

Anyway, I am going to head to bed and see if we make it through the night without further vomits and with any luck she will eat tomorrow morning or else we will be back to RCH tomorrow morning.

So, we ended up in RCH on Sunday again and we are still here.
My daughter is still not eating very well. She is eating 2 weetbix for breakfast and then about 8-10 spoons of lunch/dinner and about 200ml of fluid per day (100 soy milk/100 water). Normally she eats 6 weetbix for breakfast and about 300-400 gms of food for lunch/dinner and 1lt of fluids per day.
The doctors have no idea why, we have had doctors, dentists, dieticians, psychologists and a social worker come to talk to us and we still have no idea why.
The pediatrician is thinking he will send us home tomorrow to see if she starts eating at home in her own environment but if she doesnt then we will be re-admitted on Monday.

They haven't done much testing besides talking and asking questions and making suggestions (which havent worked - the psychologists idea made it worse, every time they look in her mouth it gets worse)

I am still concerned about it (she lost 500gms in the first 3 days, 1kg between discharge on Saturday and re-admittion on Sunday) she hasn't continued to loose but she has not gained anything since admittion either. The doctors dont seam to be concerned and dont seam to be listening to my concerns.

Very frustrated at this stage and I dont know what to do. I am very concered about the long term effects of not eating and continual weight loss -gain-loss.

Sjl

:hug: darl, have they looked into food allergies or intolerances??

Hi Olive, They have tested for a gluten allergy (blood test) and that came back negitive. We know she is allergic to dairy so she hasn't had that for almost 18 months since we discovered it.

We can home this morning to see how she goes in her own environment and then a review with the pediatrician on Monday for possible re-admittion.

The first this that made sense to me was the nurse who came round today suggested seeing a ENT specialist so she was going to get the pediatrician to send through a referal.

She has been a little better this morning, about to put her into bed for a few hours and will see where she is at after that.

how old is she?

SJL - hope you are all ok. We were in RCH yesterday as DD1 has had a nasty gastrobug and was very ill. The staff were amazing, I hope your DD is on her way to recovery soon. xxxx

That really sounds like an emotional roller coaster you on :hug:
I was reading an acticle in Melbourne's Child that sounds identical to your situation. I have just rang them to see if they have a copy of the article, it may be totally different to what is going on, it just sounded familiar. (they are hopefully going to get back to me).
I can't recall what the outcome was.. I think it had something to do with reflux, quite an unusual from of? The little boy in the article was quite old (Primary School age) when they eventually worked out what it was.
I hope your situation improves and the ENT can also shed some light on what is going on.
Is your DD old enough to articulate what she is feeling when she eats?

heather was that last month?? i remember an article too, it was reflux, is that the one? the boy was older too

Yes I am pretty certain it was Olive. I just edited my post. I hope they get back to me as SJL's situation just sounds like the boy in the article.
The article was in the April issue, it was called Feeding Frustration and they are going to email it to me in PDF format, am I allowed to copy it to this thread Olive when I receive it for SJL to read?

Edit: I have been emailed the article..SJL, if you would like to have a read of this article I can email it you, PM me your email address. It does sound similar to what your DD is going through.

Thank you. My daughter is almost 16 but intellectually she is only about 1-2 yrs on a good day.

Heather I will message you, it would be great to read. I saw our GP tonight and he doesn't seam to think that is the issue, even though he did say to continue on the meds the pead has put her on (Losec/omeprazole) for reflux issues, I dont know if that is the issue because normally if she is feeling nausous she screams until she vomits and she hasn't been doing that.

I am really at a loss at the moment, she is slowly improving and fluid have improved a lot since getting home but still minimal food. My biggest concern is what happens next time and the time after that, we have to get a permanent resolution eventually.

Thanks for the article. Interesting.
I am not sure if it is the same but I will consult my good friend google to read a bit more about the conditions mentioned.

I think given she is 16yrs old (with the intellect of a baby) I asume we would have picked up on it by now if that is the problem but then given the disability and her inability to say how she feels maybe not.

SJL I'm so sorry to hear about your daughter. I hope that things improve at home. Thinking of you.