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Hi,

My name is Deepta Srinivasan. My daughter, Amita, now 16 mos, was

diagnosed with CHARGE at birth. Even though she has more than a few

of the charge characteristics she was actually diagnosed as with

charge association/ variant. She has vocal chord/ swallowing

dysfunction, hearing impairment, heart anomalies and the colobomas.

In addition, she also has urinary reflux and is therefore on

prophylactic antibiotics. When I read through some of the mails

posted here, I saw many of the same things have also happened with

Amita. She does have central vision in her right eye although the

coloboma encompasses the macula in her left. Her hearing, found as

profound in both ears at birth (2 X ABR's), improved in the right ear

which is at a moderate loss now. The last 6 mos had been terrible of

us, she was constantly obstructing in her breathing while sleeping

and acting like a severe asthmatic the rest of the time to the extent

I and my husband took shifts with her. Then, she had RSV in Jan,

spent 1 mo. in ICU, this in spite of getting Synagis. Her CO2 level

spiked a lot during the whole 15/20 days she was on a ventilator, her

doctor made a great diagnosis, ordered a MRI and found a vascular

ring. Basically this ring encompassed her easophagus and trachea and

got tighter as she grew. Surgery got rid of it but this has left me

with a terrible feeling of doubt ... What else is lurking undetected?

She is retching now with great consistency (she has a g-tube and

nissen), almost every feeding. We have switched her to Pediasure w/o

fiber from Nutramigen and I also give her some of the Gerber veggies

and fruits. Have any of you seen this with your CHARGER'S or know

what is going on? She doesn't actually vomit out anything due to the

nissen. We have already done Barium tests and pH studies to rule out

reflux. So something else is going on? Any idea what? Retching seems

to be tied to the time and speed of the feeding. Is it too much to

hope that she will be able to eat normally in the next couple of

years?

Deepta