Sunday, May 22, 2011

Living with a child who has a rare disorder

There are six primary features of Bardet-Biedl Syndrome of which Sera has five.  There are twelve secondary features of which Sera has nine.  Although she is mobile is a very involved little girl and requires constant supervision. 

I have given her the name "Sweet Sera" because 90% of the time she has a gentle personality and a sweet soft voice.  HOWEVER, anytime food is involved there is another side to Sera's personality.  A child with Bardet-Bield syndrome can have similar characteristics as a child with Prader-Willi Syndrome.  These children have central obesity and Hyperphagia(increased appetite for food). 

Sera has no idea when she is hungry or full.  She does not register when food is hot or cold, spicy or sour.   Although she does not know when she is hungry, if she sees food she thinks she needs to eat.  If she never sees food during the day she never request to eat.  Sera does not chew her food but tries to stuff her mouth and swallow without chewing.  Of course this leads to lots of choking!

We have one main family area in our home, our living room opens to our eat-in kitchen.  NOONE can walk into the kitchen without Sera finding out.  This has been very frustrating as Sera will stand and cry anytime I walk into the kitchen.  Since we are trying to control her weight she is limited to a 900 calorie diet.  She is very limited on sweets and snacks.  Anytime I try to give one of the other kids a snack we all have to listen to Sera cry.  The rest of the kids have hearty appetites and need those extra calories.  Even if I just finished feeding her lunch, if someone else walks in to eat she will start screaming wanting to eat again.

So, I am adding to the criteria for any home in the future to have a kitchen which is closed off to the rest of the house with a door that locks. 


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