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Old 12-22-2012, 06:56 PM   #31
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Re: Spina Bifida?

Your son sounds sort of like my oldest (who is about to turn 10) but my ds was dx with hypotonia at first, but then at 3 his dx was changed to Cerebral Palsy.

As for EI, most people who get the state services also get private therapy. I works with families who are caring for infants exposed to drugs prenatally and pretty much all of them get EI AND OT, PT, ST, etc at private offices as well.


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Old 12-22-2012, 07:07 PM   #32
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Re: Spina Bifida?

IDK if this helps you at all, but this blogging mama blogs about her life with her son Kingsley who has SB....the ups the downs she's very straight forward. I know that she also belongs to some online SB groups. Maybe she can point you in that direction.
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Old 01-06-2013, 09:34 PM   #33
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Re: Spina Bifida?

Hi! I'm new here, but my son is almost 3 and has SB myelomeningocele, the most severe form of SB. He had surgery at a day and a half old to seal up the lesion in his back and again at two weeks for placement of a shunt. He has had no further issues with hydrocephalus and doesn't require catheterization or have abnormal bowel issues. He is above average cognitively (speaks primarily in sentences, uses words like "paragraph" and is beginning to identify letters and can count to two). He was developing normally physically up until about one year, when we noticed he wasn't getting close to walking and standing on his own. He uses light bracing on one of his legs and teeny tiny walker. He is getting so good with the walker that he has a pair of crutches and balance aid walker wagon on the way. He's making lots of progress towards standing and walking on his own. In other words, he is doing much better than the doctors ever predicted! And as we met other parents of spina bifida myelomeningocele kids and adults with spina bifida, we found that there is a pretty wide range of abilities. Some don't need cath-ing, some adults had a shunt put in as a baby and never need another one, some have shoe inserts and walk without any aids, many grow and go to college, get married and even have kids of their own. We were on total information overload when we found out (we didn't know until he was born), but the place we came to that was helpful, was that we would help him live as normal a life as possible if certain things were problems, but that we would be open to the possibility that he might have more capabilities than the docs were predicting. It's kind of a paradoxical place to be, to be OK if something is wrong, but open to things being right, but it's the best place to be. I have a friend from high school who has cerebral palsy and took regular classes, went to college and gave birth to a little girl about a year ago. I have a friend from college who graduated and got married and he and his wife just had a baby on New Year's Eve. In my dad's neighborhood there is a boy with Down's Syndrome who has a job, does service in the community and lives mostly independently. There are so many possibilities for individuals with special needs!
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Old 01-28-2014, 01:20 PM   #34
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Re: Spina Bifida?

No advice, just hugs, thoughts and prayers! Also, I second calling your OB and asking about taking extra folic acid. My son was born with a sacral dimple, and although he wasn't diagnosed with SB, my OB prescribed me to take 3 extra folic acid pills each day, in addition to a prenatal vitamin with my current pregnancy, just in case. Good luck to you!
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Old 01-28-2014, 02:34 PM   #35
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I just wanted to agree with a pp in saying that EI evaluates and treats based on the child NOT the diagnosis. We have used both EI and now private therapy since my dd aged out of EI. Both have worked with my dd based on her delays, not a diagnosis, which is GOOD considering she doesn't have one!!! Regardless of whether or not your lo is diagnosed with SB therapy still sounds like a reasonable thought due to the possible gross motor delay. Medical issues are generally treated as a completely different issue then developmental issues. Many specialists and pediatricians are not nearly as educated on development as therapists who are specially trained in that area!

I really hope things go smoothly, I know it can be really overwhelming at first.
Happy to be mama to my sweet little home birthed, breastfed, extended rear facing, co-sleeping, cloth diapered, snuggled and loved baby girl Havana Desai 5-18-09
Blessed to be mama to my little Angel Teya Mackenzie born into heaven on 3-27-08
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