I just wanted to update this group on a case I shared with you a few months  
ago.  A quick summary; saw a 7 month old baby girl at a feeding evaluation  
for Failure To Thrive.  She had had problems since birth and everyone seem  to 
be focussing on trying to feed the baby and not getting to a diagnosis.   She 
had low tone, could not handle sucking from a bottle, or any kind of  solids.  
She did breastfeed.  She had been diagnosed with Reflux and  followed by a GI 
doc and other tests were being done but seemed to be taking a  long time to 
get results.
At about 8 months this baby was admitted because even the minimal growth  she 
was doing stopped.  She has been in a rehab hospital for the past 2  months.  
This week they finally came up with the diagnosis; Rett  Syndrome.  This is a 
metabolic genetic disorder.  It is extremely rare  and a poor prognosis.  It 
is sad that it takes so long to get to a  diagnosis.  
I want to thank those who sent me information.
Even though I am not involved with this case any more I needed to know why  
this baby was doing so poorly.  In the Internet search on this syndrome  they 
claim that the symptoms manifest themselves around 8 months.  I can  tell you 
they are there from birth but some just ignore poor feeding as an  underlying 
red flag.
Thanks for letting me share.
Ann Perry, RN IBCLC
Boston, MA

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