When I was first told my daughter needed to have Botulinum Toxin A injections (or Botox!) at the age of 2 and a half I had no idea what would happen or how Bella would cope. We went to two different consultants and got all the medical information given to us but it’s impossible to know how your child will respond. We understood that this wasn’t a miracle worker but it might have some positive effects to the spasticity in her legs.
Bella needed six Botox injections.
Three in each leg in her calves, hamstrings and adductors. The result hoped for, would be for her heel to touch the floor, as she walks on her toes and also to reduce the scissoring in her legs. If we were really lucky we might get some independent standing. We chose the consultant who didn’t use general anaesthetic as the procedure is so quick it seemed that it would be less distressing to us all.
On the day we went to a hospital ward and Bella was given her own bed.
The doctor explained everything to us. She used a cold spray to numb the areas before she injected – she had three done before Bella started to get upset. She did cry, but once she had finished she gave Bella a chocolate button and she was happy again. The injections didn’t even take five minutes! We had to stay on the hospital site for twenty minutes to ensure there was no allergic reaction so we went for a burger and that was it we were off home. There were small red dots where the injections had gone in and slight bruising came up on one area but only very slightly and Bella was not in any pain afterwards at all.
The next morning when we got Bella dressed the effects were already showing.
We were told they would take up to a week but when I got her changed I could already feel the difference in her adductor area. The next evening she was lying on the floor making star shapes with her body! I don’t think she’d ever managed to uncross her legs herself before that.
Two weeks later, we had to go back to the hospital for serial casting. Both Bella’s legs were in plaster from under the knee with just her toes poking out the end. She was pleased because they were pink! This was to stretch the muscle and hopefully have her heel to the floor. We went back a week later to have the stretch increased slightly and Bella chose one pink and one purple cast! She was only in plaster for a total of two weeks; although she couldn’t bath they didn’t really cause any problems.
She couldn’t use her walker very well but she could still crawl around the floor and she was very tolerant of them.
They didn’t bother her at night time either. Bella had a slight flu afterward her injections but we can’t really say whether this was because of the injections or whether she was just coming down with it anyway.
After the plasters came off Bella came on leaps and bounds, about two weeks later she was standing unaided for between 2-3 minutes, she could even bend over and pick up her drink from the floor. At Easter 3 months after the injections she took two steps on Good Friday.
Unfortunately, she was then very poorly.
She got another cold and an ear infection which caused her ear drum to burst, possibly the worst thing that could happen to someone working on their balance! By the time Bella had recovered the effects of the Botox had worn off – that together with a growth spurt meant we were back to before the Botox, if not slightly tighter. It was heartbreaking but we had been warned the effects would not last.
In January, a year after the first round of injections we went again – I have to admit I was excited.
I thought that we would be as successful as the first time around. Unfortunately, for reasons we don’t know it just didn’t take. She was slightly looser and more comfortable but there was no progression with her movement. We are booked to see the consultant again in November so will hopefully have another go beginning of December but I’m not going to hope for the same success we had the first time around.
All children will have a different experience with Botox but for us I would say that it’s a fairly straight forward procedure and it’s nothing we worry about doing.
I feel disheartened that it didn’t make a difference to her walking but I am happy that it leaves her more comfortable for a few months at least.
Does your child still wear nappies? If 'yes' is this to prevent accidents when out of the home environment?