My daughter never feels hungry...

[mulsey]

My daughter is 5yrs and 9 months, she has a gdd and is hypotonic - she is very delayed in all areas, and is undiagnosed!
I dont think that she ever feels hunger, although her tummy may rumble. Thus feeding is a nightmare, and her weight is always a concern - thank goodness for fortini and double cream. There is no mechanical reason for her unwillingness to eat, she just does not enjoy the experience. Anyway, I just thought I would ask if these symptons sound familiar to anyone? Cheers....

Snap! Dd is gdd, hypotonic, delayed and undiagnosed too and we get good days and bad days with food. Yesterday she picked yet it was something she usually likes (chicken), but today she ate really well.
Don't have any answers but I know the feeling!

Snap as well. I have a 5 year old dd too and she also has gdd and hypotonia, with no diagnosis! Her eating is also very variable. It's only fairly recently that I'm convinced she does express hunger, before she showed no interest at all. She hasn't eaten much today at all.

Well its nice to know that we are not alone, because sometimes it feels as if we are. My daughter has never finger fed, and still drinks from a babys bottle...
The docs are doing some more metabolic testing, fingers crossed that we get an answer here, as the genetic tests and the MRI were all clear.

snap again. My dd has gdd and is hypotonic/hypertonic. I think feeding for her has been a sensory issue at times. Sorry I can't add anything helpful....Hope the testing goes OK for you mulsey.

Snap too! My dd1 is 12 months old and has so far been diagnosed with GDD but feel like doctors not really sure!
She absolutely screams even when she sees the spoon and just doesnt seem to understand that food is for filling her up - I am sure that if I didnt push her, she would never want to feed yet will always finish her bottle!
Again wont finger feed (doesnt put anything into her mouth) but once you get her started loves putting the spoon in her mouth - I worry that all she will eat is Sweet Potato - It's as though she is massively sensitive around her mouth
Anyone got any 'tried and tested' recipes that work?

I'm so pleased to know DD is not alone in drinking from ..........(please read in a whisper) .......a bottle, mulsey. She will take a sip from a beaker or Doidy cup but that is all. I have a cupboard full of different trainer cups but she'll only have a decent drink from a bottle. She can finger feed really well - when she wants to- but is not at all interested in using a spoon.

My DD is 5 in January (also GDD, hypotonic and undiagnosed!!) and has ongoing feeding problems, will only swallow puree food and even then it is a struggle and like you thank goodness for fortini which she will only drink through a tommy tippee sippy cup. All this has been put down to acid reflux that went undiagnosed for 18 months which seems to have totally wrecked her desire to eat.
DD's feeding is a constant source of stress for us so I know how you feel {hugs}}

Snap again
ds2 has sgdd,
he was given a gastromy (tube fed) since 7 months old as he used to go blue when feeding off a bottle

So we are not alone, and have a great many more questions that answers.
The thought of selections boxes fills me with dread, because I hate people wasting their money. Goodness I would love for her to wolf down an entire selection box though.

So can acid reflux ruin appetites? Do you know why? My daughter has a reflux problem too, and its interesting to think that its all connected.

As for the person who would like some suggestions.... well I dont think that my daughter has a favourite food, there is no dead certainty. I tend to give her alot of soups and custards, as they have alot of fluid in them too, because if you dont have the fluids then we have the constipation - oh what a flamin viscious circle.

Hey hooooooooo......... if anyone gets a dx in the future, then please let us know, as it might just help us too.

For my DD she associated feeding with pain because of the reflux, so it was almost better to 'starve' and not eat than be in that much pain(brings tears to eyes just thinking about it) and just imagine this was going on for 18months before anyone would take us seriously. Once she started on the medication she needed for it, she started drinking a whole bottle off in one go rather than the 2oz an hour at a time, plus she doubled in weight over the next 8 months. Although she will drink and can thrive on that now, the feeding problems continue. It has been explained to me that DD has missed 'windows of oppurtunity' to move on to the next stage - lumps and it is going to take longer for her to accept them. Not sure I am accepting that any more though as she has not made any significant progress moving on to lumps for the last 2 1/2 years.
When my DD eats a macdonalds, I am going to the National Press!!!