Spastic displasia mom! Help!

Chris - posted on 12/14/2014 ( no moms have responded yet )




Anyone have any advice? My son was recently diagnosed. We have been in early intervention for a year and just saw a neorologist. I feel more confused now? We just had an MRI done and the dr said he looks fine. It must be neurological. I thought we would be given answers by getting the MRI. Instead he just shrugged his shoulders and told us to keep doing what we are doing. I can't help but feel we aren't doing enough? I read so many amazing posts on here about Botox and surgeries and hope.
My son Jonas is walking. Just not well. I knew there was a problem a looooong time ago but my ped told me not to worry until after he was 18 months old. (At which time I gave birth to my second child) so I then had two kids who weren't walking, one who was like 28 lbs!!! It's been hard. Soooo hard. He is now walking but on his toes w his knees a bit bent and some scissoring. He falls sooo much and so hard his PT is worried for his knees. It's heart breaking how often I have to hold him and kids his head. He falls back ALOT! His knees seem to just give out. He has terrible balance, has trouble stopping or just standing w/o support and tends to walk in circles to change directions. His baby brother who just turned a year old 3 days ago is already running circles around him. He has high tone in his legs and low tone in his back. Any advice would be greatly appreciated!

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