This morning, we had another appointment with the Visiting Paediatric Rehabilitation Team from Adelaide Women's and Children's Hospital. They come up every 3 months, and they alternate which Doctor comes up each time. There is 2 of them, and the last time we saw this particular Doctor, he recommended Botox for Joshua. At the time, Joshua wasn't yet 2 years old, and here, they don't do Botox until the child is 2. So he was put on the list to have the Botox done 3 months later, when the team next visited and he was 2 years old. When the three months had passed, and we went back to see the team (The other Doctor this time) they said they no longer recommended Botox, as Joshua's muscle tone had improved so much they didn't think it was worth doing. It certainly had, and I was really glad that he didn't need to have it done anymore.
I have never loved the idea of Botox, it makes me very uneasy, both for the fact that it is a toxin and is not free of potential negative side effects, and for the fact that here, it is their preference to perform the Botox under Anaesthesia on young children who cannot lay still. I'm not in love with either of those ideas, but also not in love with the idea of giving him painful injections while he was awake either. I just don't love it.
Last time, I was prepared to go through with the procedure because at that stage, Joshua wasn't walking, and I saw the Botox as something that could potentially help him to walk independently, and if that was the case, then clearly we should do it. Its a risk vs benefit thing, and being able to walk independently is a huge benefit. Now however, Joshua is already walking, so the obvious benefits don't seem as great. This time, its more about helping the quality of his walking.
As I mentioned in my last post, the Orthotics we got for Joshua after his last appointment with the Rehab team, haven't been helping him, and in fact, made him walk worse. We are now booked back in to have new orthotics made, and it sounds like he will wear an SMO (the short brace) on his left foot and an AFO (the longer one, like he used to wear when he was younger) on the right foot. And that he will wear an AFO on his right foot at night too. We haven't had much success at all with orthotics with Joshua. His very first pair worked ok, but since then, we haven't had much luck. The Doctor today told me he thinks that Orthotics alone will not help Joshua's walking. That the brace will provide a stretch to the calf muscle but that stretch then causes his leg to internally rotate because of the effect it has on the hamstrings, which are also tight. He feels he needs the Botox as well to loosen them all up and prevent the negative flow on effect. He said he thinks his leg will get worse otherwise. He even said he could get him in tomorrow to do the Botox, but I said No. LOL. I need longer than that to mentally prepare for it, and we are also going to try the night bracing again, both with an AFO and with the leg immobilisers that we have used previously. We got good results with those last time and I think they played a big part in us avoiding the Botox last time. The team comes back in October, and he is on the list for Botox then, but in the mean time we will go hard with the night time stretching and see how we go. I still hope we can avoid it, at least for a bit longer, but I suppose if they still recommend it in October we will probably do it.
Overall though, they are very pleased with Joshua's continued progress, and again, the nature of his diagnosis seems to be up for discussion. Originally he was diagnosed with Spastic Quadriplegia, due to the involvement of all 4 limbs. I was then later told that they felt Spastic Diplegia was more accurate. Now today, the Doctor said he really feels that maybe Right Sided Spastic Hemiplegia is how he is presenting. LOL He still does have some mild tone issues on his left side but that the left side is basically moving and functioning in a way that looks pretty typical, whereas the right side is where you see all the awkward posturing of both the hand and leg. He said probably in about another year, it might be a lot clearer if its hemiplegia vs diplegia etc. But he is really thinking Hemiplegia now. When Joshua was a baby, 8 months old, I felt Hemiplegia would be his likely diagnosis because he had such a marked difference between the use of each side of his body....then over time his legs seemed to become more problematic. In any case it doesn't really matter, or change anything, its just a bunch of words that describe the way his Cerebral Palsy impacts his body, but its still interesting.
So thats it for now, I guess we will just wait and see what happens :)