Our daughter started back at school for the new term on Thursday, 2 September. The next day, she said she wanted to stay behind for a band practice (clarinet), which meant my wife had to go and pick her up at 5.30 pm. Unhappy with how the child looked (she was cold and weak), my wife took her straight to the doctor’s surgery. She managed to secure an emergency appointment, but only after losing her cool a little bit. Fortunately, the same doctor who had given us a referral was on the premises and he agreed to take a look.

He had the results of a previous blood test and said they were all right on the whole, with only one of the kidney readings giving him any concern. He took our daughter’s blood pressure (her arm was almost too thin—a very painful thing to have to write) and was alarmed to find it around 40. Her temperature was very low too, around 34 degrees Celsius. His advice was for us all to have a quiet weekend and to try to recharge batteries a little.

I got home at 7.00 pm and my wife was on the phone. The doctor had called the house because he had changed his mind; he wanted us to take our daughter straight to the paediatric unit at the local hospital. They checked her blood pressure and temperature again and decided to keep her in because her heart-rate had gone down to 30 and her temperature below 34.

My wife stayed in the hospital, naturally. I had to take our two younger children out into the night to take some clothes and toiletries down there, getting home at 9.30 pm. It was all very distressing for the children. We are going to have to pay much more attention to our other two, because this is proving to be very hard on them.

After a night in hospital, our child’s temperature had gone back up to over 35 and her heart-rate to over 50. The excellent medical team supervised her eating breakfast, lunch and dinner and checked her over again before saying she could come home on the Saturday night. We were all relieved. The hospital team said we could return there any time. We were very impressed.

The next day, Sunday, was a tough one. We went to Mass in the morning, but didn’t really venture very far after that, so the day dragged a bit, which is very frustrating for our suffering child. She wants to be on the move the whole time, clearly because the condition drives her to use up energy (energy she doesn’t have). If she sits or even stands still, something in her brain tricks her into thinking she is being lazy, leading to anxiety and a bit of self-loathing. Comments such as, “I don’t want to be me”, have been extremely distressing for us to hear.

The doctors said she could return to school on the Monday, and she wanted to go (to stay busy). I had to phone before lessons started to explain to one of the senior teachers what had happened over the weekend. She was very good and promised to keep a special eye in case there was any relapse. I work at home on Mondays and Tuesdays: every time the phone rang that morning, I was terrified, but we made it through the day and prepared for our appointment with the child and adolescent mental health service team the next day. I’ll relay what happened at that appointment in another post.

Love and peace to all.


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