People who have children in daily pain.. a question.

[Drivemybluecar]

I need answers and maybe some advice from people who have children with medical problems and dealing with pain.

My son has a medical problem which the doctors are finding hard to figure out. He is in daily pain. And has stopped him doing most things he loves.

I’m struggling to cope with this. It is so hard to see him like this. I spend my days trying to keep him smiling. He went through a phase last year where his mood was so down. He was having panic attacks. I can’t bear to see him like this again. And I am so worried that he will sink further. He is seeing a councillor and he does like going to that.

He has done badly on his mocks. And that has not gone well.

How do you cope with this. I am finding it unbearable at times. I want to just curl up and close my eyes and make it all go away. I can’t make him better. And this is breaking me. I need some help on how to cope with with this before I fall apart completely.

How do you cope. ????

surely doctors can do something for the pain? I would be making a huge fuss about that. I feel for you. It must be terrible.

They have tried so many pain killers. Nothing works

My son is in pain, at night he cried out but during the day he gets on with it and we have to make him tell us so we can give pain relief. It's hard, especially as it took years to diagnose and he's been in pain a lot of his life but that's his normal.
My suggestions:
Ask him and learn to know the signs that he's struggling
We give child ibrofen which seems to help but also take away some of the triggers (wheelchair when needed, planned activities etc)
Support your child and listen
Push the doctors

Sorry, I know it's hard

@Timetogiveupnow how did u cope with seeing him in pain. I feel like I have to be in top of this or he could sink so low he doesn’t come back. Mom just not coping with seeing him like this. I’m worried he will hit rock bottom. I spend my entire day worrying and stressing. I’m making myself sick over this. And is just the most awful feeling in the world to not be able to do anything.

It breaks my heart on the inside
On the outside we give him some kind of control over his life and treat him like our other dc. His pain will be with him forever so we can only teach him how to manage it.

dc has a chronic painful condition,
it's so so hard seeing your dc in pain and not being able to do much about it.

luckily for us physio help a lot and a common off-the-shelf painkiller + hot water bottles keep it at bay currently. phew.
but for some time dc was on a very strong medicines with bad side effects. dc basically had to chose between being unwell or being in pain.