baby in waiting room

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.

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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.

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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?

me waiting

JD xx

 

 

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7 Comments
  • Child Growth
    Posted at 11:32h, 20 October Reply

    oh, how frustrating&worrying for you.Give us a ring on 020 8995 0257 or use facebook group/dm if you want to talk through x

  • Katie Stebbings
    Posted at 12:02h, 20 October Reply

    Aww Jodie I wish they’d rush it through and get you some final answers. Big hugs to Esme X

  • Big World Small Problems
    Posted at 12:26h, 20 October Reply

    This was exactly the same results as Ell. Normal GH levels and normal bone age. 🙂

  • Janey Jane
    Posted at 13:21h, 20 October Reply

    Hey matey. Well all i can say is this Jodie. Even when you have a diagnosis you dont always get all the answers. The hardest thing is that uou may not get answers for a long time and i really know how that feels. We have no idea whatsoever what zach will be like in ten years time. In that sense his diagnosis means nothing. I now try to focus on his issues rather than what he has if that makes sense. Obviously know we are talking about v different things here but what im trying to say is a diagnosis isnt everything dude, sometimes all you can do is focus on the here and now xx

    • This Mum Business
      Posted at 13:58h, 20 October Reply

      I agree Jane, I think deep down I’m resigned to never fully knowing. I just feel like I need that name putting to it so I can prepare myself for any subsequent health issues that may arise. It must be horrible for you with so much uncertainty, I can’t even imagine xxx

    • Janey Jane
      Posted at 14:19h, 20 October Reply

      It is hun no denying it xxxx

  • Pickles Cottage
    Posted at 22:56h, 22 October Reply

    just read your latest blog, my daughter v similar, at age 5 still barely eats, the early years are the hardest, hugs xx

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