So, we’ve had a decent week. We were in the Hackney Gazette (our local newspaper) and the story wasn’t bad or twisted, which I was pleasantly surprised to see. We also had the visit to the special school on Monday which went amazingly. We’re going to have a meeting on Friday to review Zariah’s Educational Health Care Plan, and will put the wheels in motion to arrange a place for February 2020, for after my daughter turns 3, so yeah, overall quite productive.
I previously said I wanted to do a blog on Zariah getting Botox, and we had an appointment on Wednesday this week, with a view to get a date for the procedure, but unfortunately there was a spanner in the works and the procedure has been put on the back burner for a while. I’ll still explain why it was offered and what it would have done for Zariah, but I guess it’s just not happening for the moment.
So Zariah’s cerebral palsy means that it’s a lot harder for her to control her muscles and do simple things like use her hands to pick up toys, and self feed. Now that she’s older she has learnt to do a lot of things like bring foods (and practically everything else) to her mouth, but she’s still restricted because she can’t properly open her thumbs. Because of that, everything has to be placed in her hands in a specific position for her to be able to play with things, she can’t pick anything up from a table for herself.
Her occupational therapist suggested Botox for her hands, to help them open, and when she said it, my head was just spinning. Come again? I thought of Botox as a cosmetic procedure used to stop self conscious people from getting wrinkles, but actually, it has medical benefits for a range of people, including my two year old daughter. The occupational therapist explained it well too, so it put my mind at ease. Basically, they would inject Botox into both of Zariah’s hands. Because she is so young, and the hands are apparently a very painful place to inject, she would need to be put to sleep as if it’s an actual operation, and they would inject the filler into her. The Botox would paralyse the muscle there, meaning that her thumbs would be stuck open, just as Botox paralyses the muscle that makes you frown. Botox of that amount and size would take 6 weeks to wear off, and during those weeks, Zariah would have intense occupational therapy, regularly, to teach her how to use her hands and control the muscles in her thumbs. That way, when the Botox wears off, Zariah would be able to use her hands to do more.
We got the initial referral about a year ago, and had an assessment at the Royal London Hospital in December. They said that they believe Zariah would be a good candidate for the procedure, and I thought it would be good for her as she would feel more accomplished being able to do things for herself. Sometimes you can see that she gets frustrated that she isn’t able to do things, and it’s hard as a mother to see your child constantly trying and still not getting there. But bless my daughter though, because she is so resilient and keeps on trying.
Anyways, the bump. So every 6 months, Zariah has to have an X-Ray of her hips because children with CP are at risk of things going wrong with them. I’ll explain. When babies are born, their bones are obviously still going to grow, and as children become more mobile, their hips form properly, and start to curve, acting like a ball and socket joint (the hip bones curve around the legs). 6 months ago, they said Zariah’s hips are fine, however this time, they said her hips are deteriorating, and not forming properly. If they don’t grow correctly, it can be really painful. When they start to see things go wrong, there’s a number of things they can do, like offering Botox in the legs (not sure what this does), offering surgery to lengthen the muscles in the leg, and if it’s really bad, offering a hip replacement. Because they saw something going wrong with her hips, they’ve put a pause on her Botox. It wouldn’t be wise or safe to put her to sleep to do the Botox, and then have to put her to sleep again for surgery on her legs, so they’ve said no for now so they can monitor how badly her hips deteriorate, if at all.
The doctor mentioned that they will wait another 6 months to see how it progresses, and if it still deteriorating, they will put her to sleep and do two procedures in one (most likely the muscle lengthening surgery and Botox on her hands). So it just depends on how she gets on from now.
So we just play the waiting game…
It’s quite a lot of surgery to put on a 2 year old girl, and I get they’re there to help her, but wow, it’s a lot to process.
Anyways, this was just a quick one to keep everyone updated, we’ll let you know how everything plays out x
P.S. If any parents have experience with Botox, or hip related procedures, please message me, I’m eager to find out other people’s experiences, and how they helped your child. Thanks for reading too! x