This week I am on a warpath. I feel guilty for not pushing sooner, but I put my trust in others and now I am angry and upset.
My little Star has been in pain for more than thirteen weeks now. And the hospital have done nothing but mess us around and possibly made her worse.
Today I've contacted the hospitals Patient Advice and Liaison Service (PALS) not so much to complain but for advice on what to do. It's been two weeks since Star had her CT scan and all I've been told since then was that the physiotherapy had to stop immediately and she was not to take off her collar. We had been working with the physiotherapist really hard on moving her neck and keeping the collar off as long as she could, but it seems that it has made her worse not better. Today I called Star's consultant's secretary to see if an appointment had been made for her yet to discuss the CT and what the next plan of action was, but was told that he had no appointments for the next few weeks. So obviously my little girl is unimportant. Of course I have every sympathy for every child who needs a consultant urgently, but now I want treatment for my child and if her consultant won't see her, then I want her referred to someone who will.
It seems that just because she is alert and otherwise well and carrying on with life as best as she can, then she is not an urgent case. She can be left in pain and discomfort because she's not making a big fuss. We are the only ones who have to help her lie down in her bed because it hurts too much to do it by herself, we are the only ones who are massaging her gently when it hurts too much, we are the only ones who see her cry because she doesn't want to wear her collar any more, or cry because she wants the collar back on because it hurts so much.
Or maybe it's because the consultant does not know what to do to help her. I've heard others say what a brilliant consultant he is and I've no doubt of that, but this is a rare and complicated condition which he has probably not come across before and doesn't know how to deal with it. From the way Star has been treated so far I am convinced this is the case. From the beginning it seems that no-one had a clue what to do. She was admitted to hospital but although they talked about different treatments she was eventually discharged having nothing at all, apart from the collar, muscle relaxants and pain killers.
So now I'm at a dark place, I swing from anger to tears and I'm just fed up with my little girl not being given the proper help she needs. I want someone to take action now, someone who knows what to do and how to make my little girl right again. Past medical records on this condition show that if left later than three months it becomes really difficult to treat and can mean a permanent problem. My little girl has been left more than three months now and my fears are growing daily.
If there is by any chance anyone out there who knows of someone treated for rotary subluxation of the atlanto occipital joint, please let me know of your experience.