20 Oct The Great Weight Debate (& Yet Another Wait)
The results came back from Esme’s stim tests & bone age scans…They were normal.
She doesn’t have a ‘deficiency’ as such of the growth hormone after all and her bones are also showing as ageing appropriately.
So what does this mean?
Well, it could mean that whilst she is producing enough of said hormone, it’s just that her body isn’t ‘using’ it as it should.
Despite not being classed as deficient, she will still qualify for Growth Hormone Treatment. This will be a daily injection (given by me) that will hopefully kick start her growth.
Even though we received the results, we have to wait until December 8th for the follow-up with Professor Clayton to discuss her treatment.
I was fine with this, thinking well we have waited this long, a few more months won’t matter – until an appointment yesterday with the dietitian.
6 months ago, I asked Esme’s consultant to refer her to see a dietitian as I needed to ensure that I was doing my best for her in terms of food and nutrition.
Yesterday, she was weighed and measured.
She was 16lb – so still trundling just under the 0.4th centile as she has done for most of her life.
She was still 68cm long – this is the same as she was at an appointment around her 1st birthday, so she hasn’t grown in all that time.
Her weight and height are no longer correlating.
She needs the treatment. Yesterday.
We discussed her diet and whilst Esme likes a variety of foods, she eats very small quantities – a spoon of this, a handful of that.
She also can go for days without a poo then spend 3 days doing them constantly (Sorry if you’re eating) and there is lots of undigested food in there so is she even taking the nutrients from it?
The dietitian suggested a supplement smoothie that is fortified that she can have that may help but the difficulty is, if she isn’t growing, do I really want to be packing her with extra calories till she looks like this?
I do know that the course of GH will boost her appetite and I will welcome that.
Esme has never once indicated that she is hungry as such and I would delight in seeing her enjoy some food.
So now……to wait…….again.
You’d think we’d be used to this now wouldn’t you?