Parents of child with chronic pain

[Lavendar2016]

Hi. Our daughter has been suffering with chronic pain for nearly 18 months. Was doing well but since using a walking frame from August she developed lower back pain and then shortly after starting school in September and having to push the wheelchair a further distance she developed neck pain too. Basically been bedbound from October and needing assistant with toileting, dressing, washing and carrying as no longer able to even crawl.Off school and bring educated at home via hospital education. I've now had to resign as my employer couldn't hold my job open any longer. Are there other parents or carers out there? How do you manage? As all parents and carers we are desparate for our 11 year old daughter to recover and get back on her feet leading a normal life. Thank you.

[nedd]

I am so sorry to hear about your daughters stuggles. I had a son who gradually lost all quality of life. Through cancer. He was having his first lot of mainline chemotherapy on his 3rd birthday. We were lucky enough to have hospital support and a marvellous social worker.

Do you have a social worker? Ours pointed us toward carers allowance. Which I have to say I resisted for months. Off the back of that we got a blue badge. It helped financially.

I can identify with your desperation for your daughter to discover her old self. To my shame I was in denial for a long time refusing to see how difficult my sons life was becomming. Encouraging him to carry on with school for instance. It was my mother who threw a comment my way that floored me and made me take stock of how his life really was. Thankyou mother! I was forced to throw out my road map and see the limitations of our journey.

Always one to think outside the box. With the help of friends I found all sorts of small things to enrich his life. That were taylored to his body and energy levels. It's amazing what's out there. There was a charity that loaned us a chime bar. No energy was required to create in my sons words "sunshine".

Don't forget to think about yourselves. There is no shame in asking for help.

Make life as easy as you can. The smallest of things can drain energy physically and emotionally. It's hard to watch your child. And physically can be draining. But somehow you really do to seem to find the wherewithal when you have to. I don't know how but you do.

And don't feel guilty for having a bit of fun and a laugh yourself. Find ways to feed your own well being.

It's about making life as happy as possible.

This quote may not strike a chord and worse may make you cross. But I am throwing it your way. Even swearing can be therapeutic. Oh I have just remembered. When I was really falling apart. when on a walk with whippet. I had the urge to scream and shouted into to ether until my throats was sore. So I did. You have all this stuff rattling around sometimes it needs an outlet.

On second thoughts I will send a handful of star dust to light a dark corner. Here catch

✨✨✨

Ps it would be nice to keep us posted at how things are going.

Message if you like.

[nedd]

I forgot to say I have crhonic pain, and the health profession have less training than vets on pain management. Shocking isn't it. I have been in the system a while, and with hind sight realise some of the advice I was given was inappropriate. Pain management physiotherapist are the only ones to trust for instance,

.So I would say if you have the energy research it yourself.

And am throwing a link. This is doesn't talk about small children particularly.

Even if my this doesn't hit the spot there are all sorts on there.

Good luck

painconcern.org.uk/airing-p...

[catherineblakeney]

Dear Lavendar 2016,May God bless you, your daughter and the rest of the family. My heart bleeds for you both, there is nothing worse than seeing a child in severe pain constantly, especially after tryimg so hard to attend school and have a semblance of normality, I wonder what support you are receiving and who is helping you and your daughter to assess the situation and to slowly take little steps towards a less painful way of life, she must have been so determined when she started back to school so when she has recovered from the physical trauma maybe those strengths can be harnessed and maybe she could find an activity that doesnt hurt too much all the time e.g. crafting; learning a musical insrument.joining a self help group of like minded/age. I would venture to

suggest gentle hydrotherapy. but first gain professional advice and ongoing support.