First let me thank you for reading my post. I have written before. I have a beautiful little seven year old daughter who was diagnosed with Primary Sclerosing Cholangitis, Ulcerative Colitis and Kidney Disease.
We have faced a number of challenges, but she always "appears the picture of health", conflicting of course with her lab results.
On 16/01/2014 her results were:
I have been told her ALT, AST and GGT should be in the 40s. We have had a rough few months. (Yet again). I was really upset when I got these results, but I decided to push it aside and continue to throw the surprise party I had planned for her. Now that it is over, I am writing here because I know some of you would understand what I am going through. Like I said before my daughter dances around smiling as she goes and doesn't not realise what she is facing and fighting. I try to be diligent. I have changed her diet and read as much as I can, but sometimes when I believe I am doing all I can to keep her healthy, her numbers do funny things and I get disheartened. Then I have to put a smile on my face and start the climb again. The people around me don't understand how worried and stressed I get. They see a "healthy child" and probably think I am delusional.
What do you do when you keep getting negative news? In December my daughter had a iron infusion because they said her haemoglobin was low. Then on 24th December she had to go back because it was still too low. In January they told me her Haemoglobin had gone up, but her Ferratin was too low. She had three more infusions. Then when they did her last one on the 28th January 2014, they said her Ferratin was now 21 and a child's should be in the late 30s to 40s. That was the day I noticed that her numbers had increased substantially. They called the G.I. on call and he said as she was not displaying a fever or pain to send her home and as soon as she had any of those symptoms I was to bring her back. I was really upset at first, but at the moment I am trying to take a different stance. Which is not always easy.
I look forward to you response.