Slow growth (physical)?

[Guest guest]

Hi ~

Its been awhile since I've posted here. My daughter Halle has BPES

and is 16mos old. At her check up 3mos ago, her weight was in the

5th percentile which concerned the doc a bit. She said she wanted to

check her again in 3 mos - which was today. Halle's appetite had

improved considerably and I was certain her weight would be way up.

I was totally shocked when they told me she had actually lost a bit

of weight. She's now in the 3rd percentile (18.1lbs and 30 " long).

The doctor is wondering if its related to her BPES. She is running a

bunch of tests to ensure that there's not some reason she is not

gaining weight. She is otherwise very healthy and very active. She

has not been sick and seems to have lots of energy. They want to

check her for Cystic Fibrosis and had her wrists x-rayed to check

her bone growth. They also want her food monitored and recorded for

2 weeks and took a urine and stool sample to run other tests. I am

so worried now. My other children are small as well and until today

was certain that's all it was. But now I am very concerned.

Has anyone else experienced a slower growth with their Bleph babies?

Thanks for anyone's opinions or experiences!

Donna