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peppapig · 11-27-2010, 04:10 PM

Hi there, i have an 18month little girl who was diagnosed spastic diplegia at 11 mts old. She was prem. She sat at 1 year and has afos now and is walking (she is super determined). Without them she is on her tip toes, i feel she is quite mild given that she can walk already but her diagnosis was mild-moderate. Im wondering will she tighten as she gets older or has a growth spurt and regress? I briefly met another mother who has a little boy with diplegia and she said he walked great at 2 then had a growth spurt and at 3 his walking was a lot worse?
Im asking mainly because we are thinking about sdr in the future but she is so mild now its not something id put her through but if i thought she might get stiffer as time goes on I might think about it a bit more
When i ask her doc/pt they just say 'wait and see

' easy for them to say!

Leaciesmum · 11-28-2010, 03:22 PM

Hi and congratulations on your little one being able to walk...well done!
From my understanding they don't 'regress' per se but they do get tighter in the muscles if not stretched regularly and they do get very tight when they grow.

I know with my 4yo that she is very tight first thing in the mornings or after she's been sitting for a while. She's had two lots of Botox now and they have helped her considerably. With the last lot of botox she had a huge growth spurt so it didn't seem to last very long, but the benifit was that her muscles relaxed enough to let her bones grow.

I'm not sure how they rate kids in your country, but here in Oz kids are rated on the GMFCS scale to determine how severe they are. My daughter although she can speak beautifully and has no eating, swallowing or drooling problems, she can bunny hop, cruise around furniture (very slowly) and is just starting to take some steps using a reverse walker, she is classed as severe quadraplegic (she has a weak torso and her hand/arms are affected) because she is a level 4 on the GMFCS scale. Maybe you could look it up on the net to see what level your child is on.

Here in Oz only a select few are considered for SDR, a friend of mine's daughter is about to have it and she went from a reverse walker at 2, to using sticks at 3 and now at 4 she can walk around indoors without any aids.

I know it's maddening always having to wait wait wait for answers with our kids, but unfortunately no one can predict just what lays in store for them. I wish you luck, I look forward to hearing how she goes.

peppapig · 11-29-2010, 01:20 AM

Thanks a mill for the reply, I think il put the sdr out of my mind for now as she doing so well, I've never heard of that scale but I assume she'd fit into the mildest category. We are lucky she was diagnosed so early and we got stretching straight away. I hope your little one continues to do well for you.

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