Uncategorized
Comments 18

 Things need to change 

Things neeed to change on how we assess a intellectually disabled child with complex medical issues in pain. 

 I’m beyond exhausted after battling daily for two weeks after my beautiful 8 year old Ava has been admitted for pain management for a dislocated hip. 

The way a child is assessed for pain is totally not acceptable for a child with such great physical and intellectual disability. 


My child can go a year not crying yet needs to show physical signs of distress to warrant a press of morphine. 

She has been self harming by hitting her hip and hitting her head, pulling her hair out, crying and biting her fingers, red faced tensing. This child is normally the most settled easy going child, doesn’t even budge or flinch with blood tests. 

Yes she feels pain but has a different yet delayed response. The suffering she has experienced mainly in the past 24 hours has made it to her 5 worst days of her life list. I wouldn’t let my pet suffer the way she has. She went over 12 hours crying and self harming with twenty minutes here and there of rest in between morphine doses. It wasn’t working and no one was listening. 

Clinical reviews happened nothing was changing – time going by still getting now where.

All resources were gone.

I was at a loss. What more could I do? I couldn’t move her or pick her up yet I wanted to run away with her and take her to a different hospital for a new open mind review but that’s impossible when she was in such pain. 

Her morphine bolus was upped by a tiny 90 micrograms and this was now 11pm.  She had wanted to sleep yet the pain kept waking her up, her body was spasming and aching. 

Finally we gave her night meds (usual ) and in them her clonidine which puts her to sleep , it worked for three hours 
My point is – the way we assess disabled needs to change 

We need to listen to carers and parents and need to really give them the trust

We need to be heard – we want what’s best we actually have a life and don’t want to be in hospital and if things were able to be managed at home we would be home. We self manage so much that we really only come to hospital when we really need that help. 

Please hear us…. we must be heard 

Just because our brains and voices don’t respond the same as yours doesn’t make us any less of a person 

This entry was posted in: Uncategorized

by

I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

18 Comments

  1. Karen Dawson says

    Completely heartbreaking… Your poor little girl. I’m so sorry she is suffering so much. I really hope things improve rapidly for her very soon and the doctors start listening and changing their practices when dealing with children like your precious girl xx

    Like

  2. Rachel says

    Jo I am so saddened to hear that they are letting Ava suffer. This has been an issue in the media as recently as last week. Does she not have a regular Doc who can advocate/intervene for u. It still amazes that after all the time u spend as her carer and protector that they don’t listen to you and your concerns. I hope you find someone to listen. Often the nurses are the ones who need to convince the doctors there is a problem.

    Like

  3. Xx take it to a local member of parliament xx your lil Miss shouldn’t be made to wait so long for a spot with little pain relief 😦

    Like

  4. Linda says

    I definitely agree with you it has taken way to long for anything to happen to get her comfortable or organised her surgery to help rid the pain. Just because she can’t yell and scream and tell them what she thinks like other 8 year olds does not mean she is not in pain. I hope they organise something this week coming.

    Like

  5. Kylie says

    Totally agree. Over the years I have seen children with the same disabilities and the same issue that has brought them into hospital. One child gets pain relief and the other doesn’t; The difference? The child that gets pain relief is verbal – they can say they’re in pain, whilst the child that has to suffer in silence is non verbal and therefore receives no pain relief. My son was recently diagnosed as having multiple compression fractures throughout his spine. Sounds painful doesn’t it? But my son can’t talk and so he has received no pain relief at all. I’ve seen this over and over again with kids with severe scoliosis, hip dislocations, post surgery
    More often than not, the group of kids who can express themselves receive adequate pain relief and the children with identical conditions who can’t speak or cry receive minimal or no pain relief. On top of it all, the opinion of the parent, who knows their child best, is ignored.

    Like

    • Yeah exactly and it’s not humane at all
      Ava has sever scoliosis also and is due for MRI this week to plan for spinal fusion and we to will find out if that is contributing to pain. I wish things were better
      Thanks for your opinions

      Like

  6. Jacqui says

    So so cruel to leave Ava in pain and not listen to her parents it’s just so unfair xxx

    Like

  7. Julie says

    Hi Jo
    I’m so sorry to hear that beautiful Ava is inso much pain. You are absolutely right that something has to change.
    I will never forget the day Maya’s epidural stopped working after surgery, meaning she could feel everything! She was screaming for hours I was scared to leave her side and the nurses had obviously put us in the ‘to hard’ basket and were ignoring us.

    Unfortunately it took a meltdown from me before they would listen and not just assume the screaming was part of her condition. This was years ago and it still makes me cry when I think about how much she suffered.it really is the worst thing in the world to see your child in so much pain.

    I hope the palliative care team helps (they were the ones that finally helped me) I’ll be thinking of you❤️

    Like

    • Thanks Julie * we did this four years ago with Ava’s last hip and it’s devastating. I lost it the other night and last night. I am
      Happy that currently she is managing ok as long as we don’t go to long without pushes or the morphine. I just hate when they have a good 12 hours then they start taking away the meds instead of dealing and letting be with the what’s currently working

      Like

  8. Barbara Marshall says

    Thats a part of the reason why we left Canberra after what happened to my son Damon who was born in The Canberra Hospital. Consequently because of what happened there Damon is now in a wheelchair with severe cerebral palsy, Epilepsy, asthma, Gord, bulbar syndrome and is pegfed. My other two younger children are both autistic, one higher functioning than the other. I wouldn’t put my worst enemy through what we went through there and if you get a chance move. Sorry to hear another family has to put up with this too.

    Like

  9. Tanya says

    Going thru the same thing 6 months of pain for my 14 year old son. Things need to change. We def need a petition. Is Ryan’s Rule an option ? Do we call it everytime us carers are not heard. We are our children’s voices and we as carers/parents are the specialist of our child. Def time for action and change.

    Like

  10. JENNY Porceddu says

    Thinking of you with love Jo. You have fought bravely for beautiful Ava all her life, and of course she cant express herself when she is suffering. But you are there and you are her voice. It is never ok for medical staff to ignore or disregard the suffering of a patient, particularly a child. Nor is it ever ok to cut doses of pain relieving drugs because of pathetic cost cutting measures. You are so right about things needing to change, paticularly the attitude of doctors regarding the disabled.

    Like

  11. Their pain is our pain. You would do anything to make it stop. I’ve an 8 year old too, quad cp, dislocating (again) right hip. she tolerates pain daily too. Trying to make carers, school, doctors understand that if she’s complaining (by spasming, crying with the very worst pain), then she’s way past what most people would tolerate. My heart goes out to you. If the acute pain team can’t give enough medications, the only place to go is palliative care, who can administer more. Morphine shut Em’s system down, but cholril hydrate helped give her some relief. That was 6 years ago. I hope you find the drug that works for your Angel. Lots of love

    Like

  12. You are your child’s voice if they are failing her which clearly they were let them know in their terms and very humble that they are failing your child what they’ve done is malpractice seriously dealing with children like ours Dr’so can’t tell us how this goes we tell them as they truly don’t know never settle for anything you know I sent right for your child you request for the highest person in the hospital to come out hospital administration is always there and again in front of the Dr and head in charge you let them know they are failing your child this hurts my heart as they put us in situations that at times just make you wanna react and deal with consequences later prayers up for your little one transfer hospitals if you can

    Like

Leave a Reply to Karen Dawson Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s