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Reading everyones stories on here about how they are dealing with this horrific condition is hard to do, I thought I would share a Helpless Dad's perspective on this and hope it offers something to someone / anyone out there who is trying to support a child with this and doesn't know what to do. YOU ARE NOT ALONE. There is no advice in my story, it is just an account of where we are. I am going to try to keep this updated with any findings we have and support we are given.
My daughter is 11 and has been suffering with this since New Years 14 and we are at the end of our tethers in trying to sort it out for her. Doctors first off tried treating her for sinusitis as the initial symptoms shown were very similar, 3 weeks of this and no end of Sudafed etc and nothing touched it. A weeks course of antibiotics was tried to no avail and eventually we were referred to Rotherham Hospital's Rapid Access Clinic where she was seen and later admitted for a couple of days for tests.
Numerous blood tests, MRI's etc and a further 8 days stay in hospital and we are no further forward, she is on Tramadol, Gabapentin, Paracetemol and Amitriptiline and nothing is getting better. Her pain is constant and the shooting pains are ranging from every few seconds to every minute or two at best. Until she wears out and goes to sleep where the sharp pains seem to give her a break.
This morning thanks to more googling by my wife I feel I have turned a corner in how to deal with this myself, I know that may sound selfish but its tearing our entire family apart, as her Daddy its my job to make her better and this is a job I am not equipped to do. We have 2 other children an older and younger brother for her, its my job to keep food on the table and make sure that everything still ticks over, its my job to keep supporting my Daughter in this seemingly endless battle against an invisible pain thats defending itself against anything we do. My feelings are those of frustration that my little girl has to go through this, my feelings are of helplessness that I cannot do A THING to help her, my feelings are of guilt that I have upset her to try to get her to try and beat this herself. She IS such a strong willed little girl and I know she is still in there somewhere but it feels like someone took her to bits and didn't put her back together properly, she is broken.
I find myself now accepting that (unless the appointments we have next week turn something up) this is her life, this is our lives from now on until a cure or management process can be found for her. Supporting my little girl is all I can do now, I have to reside myself to the fact that I alone cannot fix her again. I am not sure what the future will bring for her, I can only hope that somewhere in there, there is some peace for her and her fellow sufferer's. I hope the feeling of helplessness will eventually change.
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