21 Hydroxylase Deficiency Congenital Adrenal Hyperplasia

Re: 21 Hydroxylase Deficiency Congenital Adrenal Hyperplasia

• realisticdreams member

  February 2014 edited February 2014

  They thought dd1 might have had CAH bc of a high testosterone level they ended up saying she didn't but Facebook has a couple groups that are very active. Good luck and you're more than welcome here too!

  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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• OhSewCrafty member

  February 2014

  Thank you! I'm in a few of the FB groups, but it seems to be a lot of adults with CAH or teens with CAH. I'll keep looking. I'm glad your little one ended up not having it.
  

  
  

  
  

  "I wanted you more than you'll ever know, so I sent love to follow wherever you go."
  

   
  

  

  Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia
  

  Charlie DX Specific Antibody Deficiency & ASD

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• realisticdreams member

  February 2014

  They have one for parents did you find that one?

  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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• realisticdreams member

  February 2014

  I was on my cell phone earlier, this i the link to the parents group, 
  https://www.facebook.com/groups/181860751861656/
  

  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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• thishappyhouse member

  February 2014

  I was also going to recommend facebook.  My DD, also Ginny (Virginia) was suspected of it due to high newborn screening results while in the NICU, but the challenge test came back negative.  I guess they have unreliable values for initial screening for micropreemies.   I looked for support groups in the 2 weeks that it took for the results to come back and found the most on fb. 

  
  

  your kiddos are beautiful!  I hope you are able to find the support you need

  mom to V; 25 weeker born at 1lb 7oz
  
  
  www.virginiakkent.blogspot.com

  
  
  

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