…and the journey continues

It has been a while since any new posts have been added to this blog and it was from a kind reminder from my daughter that led me back here, I had personally forgotten about this blog, and probably with the events that have been happening over the past year or so I probably should have used this space to clear my mind and lessen the burden that has weighed down on my heart.

Due to increased family pressures I decided to look more into my daughters treatment and condition. I was not happy with the treatment she had been receiving at the children’s hospital so I decided to take a whole new approach. The reasons I was not happy with the hospital is because last year around this time my daughter woke up unable to get out of bed, unable to stand, unable to even hold a mobile phone or pen in her hand. This morning I dont I will ever forget. She had come to me early in the morning saying she was not well enough to go to school, and I told her it was ok and I will be in soon to check on her. I went into her room and found she was very cold so I put some more blankets on her and needed to leave to take my other children to school.

When I returned home I opened the door to the most horrifc screams a mother can ever hear. I ran to her room to find out what was going on, which is when I found she was unable to get out of bed etc as I mentioned above. I called an ambulance as I was unable to physcially get her to the car and she was taken to the local hospital.

The Drs there did not know how to deal with a child with JIA, they asked the names of her specialists and it was decided that in the morning she would be transfered to the childrens hospital. The morning came and the transfer was cancelled. The Drs at the childrens hospital did not believe she required admission to the hospital. A few days later she was discharged from the local hospital.

A week later we had an appointment with the childrens hospital where the specialist informed me that if I had not been able to physically get her to the car and bring her to the childrens hospital then I “should have tied her to the roof of my car and bring her into the hospital”.

I could not believe this is what the drs had told me…. no sense of concern, no sense of feeling and no sense that this words would be the beginning of the end of the journey for my daughter in their hospital or under their care.

I began looking for a new Dr, which believe me was not an easy task. There are not too many paediatric rheumatologists around.. that were not associated with the childrens hospital.

My daughter had been placed onto methotrexate, and no one informed me that this medication was a non cancerous chemotherapy. I had  no idea of any side effects, I had no idea of any special precautions I needed to make…. that was until she was admitted to have her appendix removed.

I eventually found a new Dr and made an appointment to see him, which when he finally examined her, realised the childrens hospital had missed giving her a medication… her medications were reviewed and a prescription was given to another medication.

She is still currently on methotrexate, planquenil, folic acid, Iron & celebrex.

Since then we have had some good periods and many bad, the winter months are hard for my daughter, especially for school and this year seen where my daughter actually came out and asked if she could leave school. She has missed close to a term and when she was going to go back managed to fall down a flight and stairs and damage her ankle.

Hopefully in the new term, she will be able to go back to school.

Until then, and until I can find some more time to write I will.