The team consisted of a Doctor, a Physiotherapist, another lady who I am not exactly sure what she was (she was mostly just making notes on a laptop about everything) plus his regular physiotherapist attended, and so did the orthotist that made Joshua's current AFOs.
The Doctor asked questions to get an overview of Joshua's history, took a look at the MRI that was done when Joshua was 5 days old, had a look at his hip x-rays etc. In many cases, the exact cause of a child's Cerebral Palsy is not known and many of the initial questions were geared towards trying to establish what factors were present that could contribute to Cerebral Palsy, but in our case, it is pretty clear cut as he was diagnosed with Hypoxic Ischemic Encephalopathy as a newborn and the Doctor was confident that his CP was a result of that injury and not some other cause. The Doctor would have been willing to take the time to explain more about his injury to me, had that been necessary, but of course, it isn't, because I've already turned that rock over.
They also got an overview of Joshua's ability to function in a general sense, and checked the range of motion in his limbs, felt his muscle tone. They watched a video on my phone of Joshua walking in his walker, watched him walk holding my hands, saw how he crawls, and assessed the suitability of his current orthotics.
Joshua's initial diagnosis was Spastic Quadriplegia Cerebral Palsy (meaning all 4 limbs are affected), but the visiting Doctor today told me that he feels that he is more inline with a Spastic Diplegia Diagnosis, which I have said in the past that it would not surprise me if Joshua's diagnosis changed to Spastic Diplegia over time. The lines are a little bit blurry between the differentiations I think. Our physio wanted to know why he wouldn't consider him to be Hemiplegia since there is a definite preference for his left side, but the Doctor said there is still a definite involvement with his left side, so he would lean towards Diplegia which means primarily affecting the legs. And Diplegia not Quadriplegia, because he is unaffected in terms of things like breathing and swallowing.
So, once they understood Joshua's issues and how his muscle tone affects him, we discussed treatment options. There is no "Cure" for Cerebral Palsy, but there are some options that can help reduce the symptoms and improve his function. Our main goal for Joshua, in thinking about treatments, is really to get him walking properly. That is the most biggest issue right now. He can't walk. So the options are:
- Botox - Injecting the affected muscles with the Botulinum Toxin Type A. This is a neurotoxin that acts to block the nerve signals to the muscles, thereby relaxing the spastic muscles. The results can last anywhere from 3-12 months, but most commonly around 3-6 months. The injections would be given under a General Anaesthetic, due to his age and the fact he would be unable to lie still enough for the procedure and would likely become quite upset. The injections also hurt obviously... and it would involve multiple injections. The procedure would only take about 10 mins to complete.
- Baclofen - An oral medication that acts to relax the tone. This medication acts on ALL muscles, and does not target specific muscle groups so is not considered the best treatment option for Joshua.
- Surgery - Too extreme a measure at this young age.
- Serial Casting - Where casts are applied to hold the limb out to stretch the muscles. Sometimes done in conjunction with botox. Being in a cast present difficulties in itself, so it is preferred to try other options first.
So, right now, the preferred treatment plan is Botox. Joshua has been placed on the list to receive Botox when the rehabilitation teams returns next time, which is in June. In Australia, they will not do Botox until 2 years of age, so it is fortunate that Joshua turns 2 in May and will be able to have Botox the next time their return. It is a scary thought really, especially that he has to be put under for the procedure, but from speaking with other parents, the response has been overwhelmingly positive that Botox was a good thing for their child, so hopefully that will be the case for Joshua too. The Doctor assumed that Joshua would have been put under General Anaesthesia in the past for his MRI and CT scans etc, but he never has. We were able (with difficulty) to get him to sleep for those things and avoid the need for sedation or anaesthesia, so this will be the first time. The Doctors recommendations were to inject his right hamstring, right calf, left hamstring (at a smaller dose than the right), maybe the abductors... he thinks it would benefit him but they are more optional than the hamstrings and right calf... and he also believes it would be beneficial to inject his right bicep with a small dose... that it might help him balance out his arm use more.
The biggest potential problem with this, is the fact that the Rehabilitation team is due to return, Literally, when I am due to have this baby. Of course, Rod could take him without me, but naturally, I want to be there. So short of me being in labour the very day his Botox is planned for, I guess we will work it out. Nothing is ever simple around here ;)
Joshua is also going to get new AFOs. His current AFOs are fixed, but his new ones are probably going to be hinged, which is better for walking because it allows for the natural up and down movement of the ankle when walking. So that appointment will be soon, maybe next week. As of next week I am only going to be working three days a week instead of four, so it gives me an extra day to play with for fitting in appointments :)
Joshua has been such a little champion with his walker, he has had it for a week now and is doing so well with it. He still needs to learn to steer and change directions, but he is doing very well walking with it, and hopefully the botox and new AFOs will help a lot with the problems he is having with his right leg and help him walk on his own..
Here is a video of Joshua walking with his walker. He loves it so much and is just thrilled to be upright and feeling like a big walking boy.
And some photos of him :)