Hi. I really need advice. My 14 year old daughter has been very ill for 5 months. No school in that time.

[purple-lou]

Initially the gp said she had glandular fever. Her symptoms have got progressivly worse. They are: severe pain in her hips and back. Pain around her ribs. Crippling head aches. Swollen face on one side. Purple rash on her face. Swollen, painful hand which she now cant use at all. Blacking out on several occasions. Weight loss. Severe fatigue.

She has been poorly on and off since she was 5 with similar symptoms. Its much worse now though.

The gp wants to do bloods but she has a chronic phobia due to a terrible experience when she was 7.

I am considering taking her to a hypnotherapist.

Any advice would be most welcome. Im constantly flaring due to the stress of seeing her like this. Her brother has RA so there is a link somewhere, but doctors choose to ignore that.

School is threatning to prosecute even though i have given them 3 doctors notes and a report from her gp.

Thanks for reading xx

[MaryF]

Hi again..I hope the tests go ok.. and make sure they test for Hughes Syndrome/APS, she can have the back of her hand numbed and take a friend of yours with you for her for support, and yours. You need them to get to the bottom of her problems. The tests are these: hughes-syndrome.org/about-h...

and here is a list of specialists for the GP: hughes-syndrome.org/self-he...

My daughter has Systemic Lupus and Hughes Syndrome/APS and my son Hughes Syndrome.

Did the Parent Partnership help you?

MaryF

[MargaretGail]

Hypnotherapy could be invaluable for the needle phobia. My father was a hypnotherapist and I know that he helped a lot if people with phobias.

[Cma9905]

This is like reading my own story. My 14 year old daughter has been off school and we are getting the same hassle over it. We are lucky in that when she had a camera put down she was asleep so they took her bloods then. However due to her condition she will need bloods every 3 months. We are under Addenbrookes in Cambridge and they have been very good with her. She is also under a Phycologist who is trying cbt to help with phobia. I know how u feel, I want the best for my daughter but also get very stressed between being supportive of phobia and pushing. Do u be cruel to be kind or just kind??? I really do feel for u and I hope ur daughter all the best. I wish there was a magical cure for this. Carole xx

[Cma9905]

Hi. Also what is the doctors letter saying. I have found out if the dr sends letter stating she is unfit for school, then the school have to look into homeschool or sending work home. However I have found dr and reluctant to do this.