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Date: | Fri, 27 Jan 2006 09:19:52 EST |
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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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