helping dd cope with pain

[ariane5]

Dd1 (11) is having a lot of difficulty coping with pain on a daily basis.

This morning was particularly bad and took me just over an hour to get her up and dressed as she was sobbing with the pain. Really I could have just left her in bed but this is something she will always have to cope with so she needs to find ways to push through.

Dd has got EDS hypermobility type, pectus excavatum(has caused her chest to be very misshapen and affected how she has grown, she is v unsymmetrical and as a consequence has severe neck and shoulder problems). She also has PoTs which causes dizziness/fainting.

She tries hard to keep up and join in with her friends but I'm noticing that she needs more sleep but is getting more pain. This morning she needed paracetamol, nurofen, a back rub and for me to dress her, she couldn't even bend to do socks/shoes.
It is upsetting to see and horrid for her. Physio sees her regularly and she has been good doing her physio daily. Last week she was on a school trip and really overdid things and on sunday for a treat she had a horse riding lesson (we thought it may help with posture issues but now wondering if it has contributed to her pain levels).

I don't know how to help her.

Your poor daughter my heart goes out to you both.

2 years ago when my son (he is deafblind CP and epilepsy) was 12 he had severe pain episodes and he would scream arch his back and would extend his limbs for 2-3 hrs at a time.It was heartbreaking to see and reduced school staff to tears.
Finally he was diagnosed with neuropathic pain and now takes Amtriptyline and Propanolol and he is so much better. Apparently this pain is like migraine but not always a head pain IYSWIM

Good luck
PS One paediatrician said it was behavioural fortunately he was shot down in flames

I have phoned dds physio to see if she can arrange for dd to see her consultant and perhaps get some stronger pain relief.

I just wanted to tuck her back into bed this morning but I dont want her to just give up as she gets pain every day and she is due to start senior school in september. It is horrible seeing her so upset, usually she puts a brave face on but to see her sobbing this morning was dreadful.

Last week on her school trip she broke down in tears then lost her temper as they were doing a long walk and she couldn't carry on. She told me how her friend talked her through it and walked with her and that they were so far behind the others. Dd wants to be the same as everybody else and pushes herself too hard sometimes.

We can't seem to get the balance right at all. Gp doesn't seem to understand at all so think the best bet will be to see the consultant again.