I'm a big believer in doing my own research rather then always relying on the experts to have the answers. But at the moment I am stuck. The problem is that we are on a waiting list for our local 'Early Intervention Program' & this is likely to take about 6 months (gotta appreciate the irony of the term 'Early intervention'). The physiotherapy department at RCH has offered their services in the interim but even that has a 6 week wait. I can't even begin to tell you how much this pisses me off but I'll save my rant on the shortcomings of the public health system for another day. I need help coming up with other strategies for getting Max to use his right hand and ideas to help him relax it more (it's always in a fist). We do a lot of massage and prompt him to grab with his right hand but I wonder if there's more I could be doing? My beloved Dr Google has been no help whatsoever. There is so little information on stroke rehabilitation in infants. Much of the information is about recognizing a stroke in babies (thanks but you're too late) and rehabilitation in adults. Ergh! When Max first got sick a lot of people asked if there was anything they could do to help. At the time there wasn't but if you could help by offering suggestions, suggesting links or even sharing this page via Facebook/twitter so that more people can see it, that would be much appreciated.
I've just sent this to twitter xxx
ReplyDeleteI don't have many followers on twitter but I have linked it there and also on my private fb page.
ReplyDeleteI'll keep my ears peeled.
Hi there, I had a similar problem with my eldest except that both of his thumbs were closed all the time and very tight. Found nothing on Google. This is the only time my research was fail. After asking for opinion from various sources incl. maternal nurse, GP, osteopath. Finally a GP in Docklands refers us to Mr. Bruce Johnstone. He is a paediatric hand specialist. We didn't even know that such specialist exists until then. Google him. And I recommend you book him ASAP since it's very hard to get an appointment. Then you'll need a referral letter from a GP. The good thing is he didn't recommend any operation straightaway. My son wore splints for a couple of months and his hands are now perfectly normal
ReplyDeleteThanks guys.
ReplyDeleteiLei thank u for passing that on. What was actually wrong with your son?
I read the first 5 or so posts - and then this one. Faithy this is fantastic - I had no idea that you were doing a blog (secretly disguised as Max).
ReplyDeleteOnly request is for more photos please! I still look back on his photos prior to him being first admitted. So fast, but he's lucky to have such an amazing mum - and also an amazing support network of healthcare professionals and family around him. Good work lovely xoxoxoxox
Hello, I work in EI and suggest that you call central intake and find out how long the actual wait is cos it shouldn't be that long for a little one. Have you spoken to the Physio dept at RCH cos they may (or central intake in your area) may know about a group that you can join whilst you are waiting. I hope the wait is short cos EI is so good and it is such a wonderful area to work in with fabulous kids who achieve the most amazing things! Jane
ReplyDeleteHi Faith,
ReplyDeleteHeard about yout story from a friend of yours from school. Sorry to hear about Max.
Can you please email me at kayelle@live.com.au as I have a few suggestions re. services you may be able to access.
Kara