Special Needs
tirola
member
Spastic Diplegia
tirola
member
Hi all! I have been on these boards for awhile now but didn't ever realize there was a special needs board...wish I would have checked it out sooner!
Anyway, my 2 year old step daughter has been recently diagnosed with spastic diplegia. She has been getting pt through early intervention since September because she wasn't/isn't walking. She has high muscle tone in her legs and a weak core. At the recommendation of her pediatrician, we saw a neurologist at the end of November who then gave us the diagnosis of spastic diplegia. She basically recommended continuing her pt for awhile and then would like to see her again at the end of January to evaluate and possibly do an MRI. Little one got her AFO's a few weeks ago (and hates them!). We do keep the AFO's on and work with her everyday as far as stretching and that sort of thing.
I just feel like I'm at a loss. I don't know what I should be doing! Her therapist has mentioned several things (a walker, botox, rehab facility, spio vest, etc) but that's all "at some point down the road". We are currently trying to get her in to see a physiatrist but the wait list is ridiculous. Does anyone have any tips/resources you would care to share? I am trying to do everything I can to help her out but feel like I'm falling short! The whole thing is just very overwhelming and I'm still trying to wrap my head around it all...
Anyway, my 2 year old step daughter has been recently diagnosed with spastic diplegia. She has been getting pt through early intervention since September because she wasn't/isn't walking. She has high muscle tone in her legs and a weak core. At the recommendation of her pediatrician, we saw a neurologist at the end of November who then gave us the diagnosis of spastic diplegia. She basically recommended continuing her pt for awhile and then would like to see her again at the end of January to evaluate and possibly do an MRI. Little one got her AFO's a few weeks ago (and hates them!). We do keep the AFO's on and work with her everyday as far as stretching and that sort of thing.
I just feel like I'm at a loss. I don't know what I should be doing! Her therapist has mentioned several things (a walker, botox, rehab facility, spio vest, etc) but that's all "at some point down the road". We are currently trying to get her in to see a physiatrist but the wait list is ridiculous. Does anyone have any tips/resources you would care to share? I am trying to do everything I can to help her out but feel like I'm falling short! The whole thing is just very overwhelming and I'm still trying to wrap my head around it all...
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Re: Spastic Diplegia
DS2 gets the gamut of therapies, which have included hippotherapy and aquatic therapy (although not "real" aquatic therapy since the water temp was not actually warm enough). He has also had botox in his legs. Something I learned with botox is that it works for some but not all. For us we did not get the best results (I and his neuro hoped for more results) but someone else on here had great results when their son had botox. We did 4 different injections: that would be 4 separate appointments a few months apart and there were multiple injections in each leg (I believe 4 injections in each leg). I won't lie - it hurts them but not for long, just be prepared for a lot of screaming and crying. My son was done crying by the time we got back out tot he waiting room.
He also wears foot orthotics. He has worn SMOs, AFOs, and DAFOs. His PT prescribes them but we also see an orthopedist who checks his hips, his gait, and his braces. My son also has a manual wheelchair which we use for long distance and a walker which he uses at school (but requires supervision with it since he is still a high-fall risk).
Our specialists are orthopedics, neurology, ophthalmology (all pediatric doctors) and a developmental pediatrician one time per year. We are military and the developmental pediatrician is more a check up to make sure we are seeing who we need to, etc. then anything else.
I am not sure if I helped you at all but if you have any specific questions I would be happy to answer them to the best of my ability.
As far as doctors and therapists, it will really depend on your child's needs. For therapy my daughter sees PT, OT, and Speech. She has a physiatrist (CP), an orthopedist (Hip displayaia related to the CP), a neurologist (IVH which likely caused the CP), a Gastroenterologist (GERD and dysphagia related to CP), a nutritionist (G - tube dependent), a blood doctor (blood clot, unrelated), a urologist (kidney stones), a nephrologist (kidney stones), an ENT doctor (former trach dependent), and Opthamologist (strabismus related to CP).
As far as equipment goes, my daughter has a stander, a walker (which she hates), a potty chair, a manual wheelchair (which she uses most of the time), and an Upsee (a harness you strap to yourself and your child so the two of you can walk together).
Positives:
- Lily likes it better than her walker
- It is better on my back than just holding her up
- Lily initiates her own steps in it
- It gives her more freedom than her walker (i.e. getting close to toys, going up stairs, etc.)
Negatives:
- It is really hard to get on alone
- Lily's feet are a bit too small for the sandals (so she's always pulling them out)
- Lily's PT recommends no more than 15 minutes in it, and it seems like a lot of work for 15 minutes
- Lily is a SLOW walker. So at this point, there is no point in using it while we are out (For example, I would love to have Lily in it at the children's museum. But with the 15 minute limit and her slow pace, we'd make it in the door and have to take it off).
While the number of negatives equal the number of positives, I still think the good outweigh the bad IF you are willing to drop the money for it. My grandmother bought Lily's and I am very grateful for that.
She had pt this morning and her therapist brought over a walker for her (She calls it her car) and it took her a little bit to get the hang of it but once she did, she is loving it!! Not going to lie, I started crying as she took off walking around the living room. I felt like it was a great start. I know she has a long way to go but we'll get there!
Thanks again!
Isn't it exciting seeing them do things that they haven't before?!