Caudal Regression?

Re: Caudal Regression?

• realisticdreams member

  November 2012

  jennabird37:

  Any other moms here have children with caudal regression or sacral agenesis?  My daughter is six weeks old today and has CRS and Goldenhars.  I don't know what to expect as she grows.  She's missing everything below L2 and we are working with Orthopedics to straighten out her legs to see if she might potentially use them.  Any recommendations?  Things to watch for?  So far none of our docs have dealt with CRS personally.
  

  1. Big hugs & welcome to the group.

  2.  I only know the very basics of what you are dealing with, dd1 has a neural tube defect that causes her to have major bladder issues (see siggy) so on that aspect I know a little more.  I hope you have urology on board already?
  
  You could also try madisons foundation and see if they have any members linked in with that diagnosis to reach out too, or check facebook for a group, i've found amazing people through facebook who share similar dx.  
  
  
  

  DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

  
  

  DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  
  

  
  

  http://justthetipblogg.blogspot.com, The Neglected Blog.

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• jennabird37

  November 2012

  Great idea about facebook.  The founder of the caudal regression non-profit lives in my town and she has reached out to us.
  

  

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