After Ivy started showing symptoms in May, the family have been through a whirlwind of emotions, tests and trips to the hospital.
My daughter, Ivy, who is three years old, was a very active, chatty and happy little girl. A week after her birthday I noticed that her right hand was shaking. She is (or was) right handed and was progressing really well with drawing shapes and faces.
The next day her hand was still shaking so I called 111 who advised us to call our GP. After phone calls and videos, we were referred to Worcester Royal Hospital to have an MRI and blood tests; the results came back normal other than iron deficiency anaemia. We were sent home with some medication and a follow up appointment for three months later.
We carried on as normal, Ivy started to use her left hand for everything as the tremor wasn’t easing up. About three weeks later I noticed while we were out walking (she could walk for miles and loved it) that her right leg was shaking. I immediately called the consultant but his response was to give the medication another two to three weeks to get into her system. This didn’t make any sense to me; they had said that they weren’t sure if the medication would stop the tremor. I felt like we were being brushed off.
I waited another two weeks and, in that time, I knew there was something wrong. She was becoming more unsteady on her feet, falling over a lot and using walls and doors to lean on when moving around. I finally convinced the consultant to see her again and, when they did, she was admitted straight back to hospital.
They performed another MRI with contrast this time (contrast agents are used to improve the visibility), more blood tests, a lumbar puncture, an electroencephalography (a monitoring method to record electrical activity of the brain – EEG), a nerve conduction test, and an ophthalmologist looked at the back of her eyes. Ivy was in hospital for four days and didn’t recover well from the anaesthetic, she was sick for over 24 hours and couldn’t keep water down.
The results came back normal so we were sent home with the advice to ‘keep her safe at home’ while we waited for an appointment with a paediatric neurologist at Birmingham Children’s Hospital.
Since then, Ivy has been unable to take a step on her own or to stand without holding on to something. She struggles to eat and her speech has changed dramatically. It takes her a really long time to get her words out and sometimes it comes out as a whisper. It is so hard to see because she has always been advanced with her development and loved nothing more than to sing and dance.
We were told that she has ataxia but they don’t know what has caused it as all the tests are coming back as normal. It has been over three months since it started and we are no closer to finding out what has caused it. We don’t know if this will get better or progressively worse.
I have had to remove her from nursery for now and I have given up work to care for her. We have to use a push chair to get her around and she has been fitted for a frame which we are waiting on.
Our experience has been horrific. It is hard enough to watch Ivy disappear before my eyes, but we have had no support from the doctors we have seen so far. They have openly admitted that they have never dealt with ataxia before and I feel like because they can’t find anything obvious that has caused it, they don’t want to deal with it.
We are adjusting to the new ‘normal’ and trying to take it day by day, but I feel so helpless that there is nothing I can do for my baby.