Tuesday, February 26, 2013

3rd Appointment with Visiting Paediatric Rehab

Today we once again attended the Visiting Paediatric Rehabilitation Clinic for Children with Cerebral Palsy.  This team visits from the Women's and Children's Hospital in Adelaide and comprises of a Doctor, Occupational Therapist, Physiotherapist, some other lady that takes notes (hah!) as well as a member from our hospitals Orthotics department and our Physiotherapist from Carpentaria Disability Services.  Combine that with myself, Rod, Joshua and Amelie, and that small room was pretty busy!
I am pretty sure I was sent a letter after his last appointment summarising everything and I hope they will do that again because it can be pretty hard to follow everything with multiple conversations going on with all those people and juggling both kids.
So, the last time we saw the Team was in June last year.  At that point in time, Joshua was walking with his walker, could cruise furniture holding on and stand unassisted for a few seconds.  But despite that, the Dr wasn't willing to speculate whether or not Joshua would walk on his own in the next year.  I told him that he would, and he sort of smiled at me pitifully.  So I left that appointment thinking right Joshua, you need to be walking by the time we come back to see this guy.   And he took his first independent steps 6 weeks after that appointment.  
Joshua has now been walking independently for 6 months, and he doesn't use his walker anymore.  He can walk forwards and backwards, he makes a pretty good attempt at jumping, and he runs.  His biggest Challenge walking wise is uneven surfaces, stairs, kerbs, raised door frames etc.   He is definitely more unstable on his feet than a typical child of his age, but boy does he get around.
The Doctor noted his presentation at his last appointment and was suitably impressed that he is now walking on his own.  He said he is doing great for someone that has only been walking for 6 months.
They were also quite impressed by my not quite 8 month old baby and her freakish levels of mobility, pulling to stand and cruising around everywhere and trying to get into all the toys they had there to engage Joshua.  LOL.    
So my main concern that I wanted to address with the team today was Joshua's right foot and the fact it turns so that he walks on the side of his foot rather than the sole of his foot.  Before he started walking independently, he was wearing Ankle Foot Orthotics (AFOs) but once he started taking independent steps they restricted his movement too much and we took a break from them.  Once he was walking better, I tried them again but didn't really find them satisfactory as they were marking his skin and were not correcting that issue.  I had discussed it with his Physio of course and she had speculated a few possibilities, but basically, I wanted to speak to the experts and find out their opinion on what we needed to do as far as orthotics went.
As part of the appointment they watch him do things and also have him lay on the bed so they can stretch him and examine his muscles and tone.  Today while doing that they were throwing around the words "variable" and "Dystonia" which I find interesting.   Cerebral Palsy can affect movement in a variety of ways, the main one being spasticity, or muscles being too tight, but Dystonia is another way, and I've never really considered Joshua to have dystonia because that is generally related to involuntary movement.  
Here is a definition I have pulled up for Dystonia:

What is Dystonia?Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.        

So, I'm not sure but maybe more the "awkward, irregular postures" rather than "repetitive, twisting movements".   I'm hoping they might write something about that in their report.  
I also heard the Doctor loosely refer to Joshua as being a Level 2 on the Gross Motor Function Classification System (GMFCS).  At his last appointment they had him down as a Level 3.  (1 is Mild, 5 is Severe).  I'm not sure if Joshua will ever be a 1, but I am very happy with a 2 and the fact that he has improved so much in his physical abilities that he has been able to be downgraded.  

They are really happy with the progress that he has made, and the Doctor said to me "He is going to do well".   That is a positive projection for the future if you ask me!  And they can be pretty hard to get out of these Doctors!  ;)  

So, about his legs, we need to watch and see what happens.  At this stage, they don't think Botox will help him much, and that managing his issues with orthotics only is the way to go right now.
He previously wore AFOs, which looked like this:


 Those aren't his, (they are a lot nicer than his HAHA) just a picture I pulled from google, but you get the idea if you haven't seen them previously, they go up the leg quite a bit.  
Their recommendation now is not AFOs, but SMOs, or Supramalleor Orthotics.  They are much shorter and look like this:


Here is a picture of a little boy wearing them, so you can get an idea of how they will look with his shoes:


These will be much more comfortable for him I imagine, especially in the Darwin heat, not having to wear such long socks.   So the Orthotics department will be giving me a call to go in and get that organised.

I said to the Doctor that my concern was whether or not his leg will get better or worse as time goes on and the Doctor said without missing a beat "It will get better, its our job to make sure it doesn't get worse".  Umm ok.  LOL   But good news anyway, so  basically the plan is, orthotics and watch it, and there is still a possibility of Botox in the future if it heads that way, but not at the moment.

So basically things are looking really positive for Joshua.  Our biggest issue right now is really probably his speech.  He still doesn't say all that much, certainly nothing that helps us to determine his wants or needs, but fingers crossed it will come in time.....   Hopes and prayers for a speech explosion...  LOL  

And thats it...  I will do another update if I do get a report from the Doctor...And again when we get his SMOs.  :)