My 12yo DD has a number of medical issues. One of these is she has a delayed gastric emptying. This basically means her stomach does not empty as fast as it should. She is under specialists at a children's' hospital in London.
She has been steadily suffering from worse symptoms, the main one being constant nausea. She's not actually sick, just feels so very sick all the time. She's on a whole host of medicines, but they do not seem to control it for her. Her consultant is aware of these, he changed her meds around during her last consult in Feb. We follow his advice re. Medicines, diet, little and often meals etc.
The past few weeks the waves of nausea are increasing, to the point that she is not coping at all. She's not sleeping, she has styes come up on her eye and she's basically running on empty. It came to a head on Tuesday night when I called 101 for advice on how I could help her. They said because of the meds she was on, there was nothing they could do, and to take her to the hospital where her consultant was based. We did this, and they said they gave her an injection. It didn't really have any effect. They said they would email the consultant and I would receive a call the following day.
No call. I called the secretary, left a VM regarding the situation, requesting a call back. I received a call from a registrar on Thursday afternoon. Explained the situation, he said he would need to speak to consultant. He called back and said that she would need to take another med. she was taken off this particular med because she had a reaction to it - stomach cramps, dizziness, dry heaving. I explained this, but the doctor was dismissive. Said to try again. Fair enough I said, but how long should I give it? What do I do if it has the same effect? You can discuss it in clinic he said. When I queried when that was, he said it would be a few months! I said that wasn't acceptable, the symptoms are making her so miserable, they are preventing her from going to school and she is just so so fed up. His response was a very sarky "well what do you want us to do, what should we do"? I replied I didn't know, but giving her a med that she already had an adverse reaction to, and a vague appointment in a few months did not seem in her best interests. He replied by saying there was nothing he could do, goodbye, he would fax the prescription to my GP. I stress I was not rude on the phone to him in any way. 24 hours later, no prescription.
I called the Consultant's secretary again and said I was not happy and we needed more help. No answer as yet.
I know that there are children far far worse than she is. But she is suffering. She's making the connection between food and feeling sick. She doesn't want to eat. She is so unhappy. She is due loping eye styes from being run down.
What do I do now? Do I complain about this doctor and alienate the whole gastro team? AIBU in expecting more help, and expecting it sooner rather than later? How do I help my girl?