Friday, January 25, 2013

My little girl has been so ill.

My little poppit is ill, we have been in hospital since Sunday.

   I will tell you now that she has been diagnosed with Coeliacs disease just to stop the worry and and save you reading what was going to be my long winded recount of events.

She is still in hospital, she has lost weight, all her muscle tone is gone,her little bottom is gone, fat stores are gone, her arms are about an inch in diameter, she was 9.7 kg that is two kg below the third percentile, she is three years old.

I couldn't help but feel that we should have acted sooner or that we should have kept up with her health checks, all our kids are small so we just assumed she was small too. I know that we fed her well and that we always made sure she drank, but when you see your child on the emergency bed and they look scrawny, pale and have a distended belly you cant help but feel like you did something wrong. But I  know now that no matter how much she would have eatten on her current diet she would still be malnourished. Without us knowing her body stopped absorbing nutrients and fats, her immune system was in shut down, she couldn't even move from wherever you last placed her last, she'd fall asleep in that spot.
The illness was too quick, unrelenting ,the lethagy and and weight loss took a very big toll on a little person. With symptoms of intermittent vomiting and diarrhoea we thought as did the GP that she had gastro. 
 I never would have even thought coeliacs was like this at all. I didn't know much about this disease I only knew there was such a thing and that I was glad I didn't have to worry about it, It seemed like a difficult thing to live with.
I  also didn't know it could present in such a way and  I wasn't aware one could become so ill  just from gluten and that It's affects over time were so damaging, cancers, osteoporosis, chronic fatigue and damage to the small intestine and not to mention all the other problems with the gut that one might just live with.
The wait this week to find if her screening was positive has been long and frustrating. We filled our time reading books when she felt up to it, cuddling lots and lots ,so many cuddles it's been so nice. All the time her condition has not improved, yesterday was our better day and we thought she was on the mend, today she slumped again. Today I had to continue feeding her gluten foods even after learning of the positive result this morning. Her diet needs to remain the same for the tests being done today. Feeding your child something you know is making them ill, was so hard, it felt like I was giving her poison.
 Our priority has been to have her gain weight whilst we waited for the result. I went home on Tuesday and made her favourite thing Lentil curry and rice. This morning she had it for breakfast even, as we were up too early for our breakfast tray and she was hungry" now"
Circe's only concern in all of this has been for her poor tiny hands and her sucking thumbs,each hand has been poked with cannula  and tomorrow one will have to be re cannuled.and again a thumb will be out of action.
Today she became very concerned and rather distressed when the paediatrician was talking about how she will grow bigger and thrive on a gluten free diet. When he left she said " I don't want to grow I want to stay small" she thought he meant she would grow bigger straight away.
 I am so relieved that this was caught early and that the doctors at The Royal Children's Hospital here in Melbourne are so darn good that I can easily place my faith in them and hand my child over to them today when she has  an endoscopy under a general anaesthetic. I am still scared and nervous but I know she is well looked after.

The pictures above were taken a a day before she was admitted into hospital, she was resting on my bed as she had done several times that week.Her sister Eliza wanted to look after her, I think she prepared her little sister well for what has followed this week.


  1. Oh, I am so sorry to hear your daughter has been ill. Cuddles are the absolute best. We have had a couple of occasions to be thankful for the Children's Hospital - normal childhood things - but a total relief to have them dealt with so well.

    I hope Circe makes a speedy recovery.

  2. I am so sorry to hear about the ordeal you have been on. I am glad you have found out what the issue is so that you can focus on her getting well. I hope you are managing to get some rest for yourself as well. Send lots of love your way and hoping you are all home together soon. Lovely pics too. Such a special relationship.

  3. My doctor brother nearly starved as a child until they diagnosed coeliac disease (more than fifty years ago in the old Children's in Melbourne - throne before last). By trial and error, my parents had taken him off gluten. I remember Mum saying the worst part for her was when the hospital put him back on it to run the tests.

    Turns out I have it too in my 60s. At least there are GF options almost everywhere you go these days. I do wish you and your little daughter a much easier journey from here on. Jean

  4. Oh poor all of you - Ines you and all your family only ever do the best for each other, and you can only go by the advice you are given at the time. Youre all so fortunate to have eachother and to have the information you have now received. Wont it be great to see Circe gain strength again :) Thanks once again for sharing in your blog and hugs to you all Samantha x x

  5. Poor little poppit. Wishing her a brighter, healthier year ahead xx

  6. Poor little sweetness - Ines you are a fantastic, super dedicated mother, I've always learnt from you and taken inspiration from your actions. Please don't fear. Now that you know, it can only get better - can't wait to watch the coming food adventures, which are sure to be delightful and very interesting :) Might pop over soon - hope P is doing well?
    Love the L-Js

  7. The two of them are so cute playing doctor and patient. Though it's unfortunate that your little poppit had to go through that. I hope she’s okay now. Sadly, there’s no cure to coeliac disease yet; merely a precaution of sticking to a gluten-free diet to avoid triggering it. I hope she’s faring well with that. All the best!

    Joel Haynes @ Herrin Pediatric