Re:New member intro and questions about choanal atresia and/or trachs

Posted July 18, 2007 · July 18, 2007

Candi,

Welcome! My son Ethan is 5 years old and had bilateral choanal atresia

surgery when he was 7 days old. This was the only surgery he has had so far on

the atresia and one nare is 100% open and the other is 50% open. I'm not sure if

the success of the surgery has to do with the surgeon, but our ENT did his

fellowship with Dr. Cotton in Cincinnati (We live in a suburb of Chicago). I

believe Dr. Cotton has a lot of experience (relatively speaking) with CHARGE

kids. Even though I consider Ethan choanal atresia surgery a success, he did

end up with a trach at 6 months old due to excessive secretions and aspirational

pneumonia which caused chronic lung disease. Thankfully after all these years,

the lung issues are only affected when he is sick, but he still has the trach.

We use the Humidvent T (570016 part number). We do got through about 4 " noses "

a day from wetness, but EThan's cough is so strong now that he can cough his

secretions right out and we just suction them

out of the humidvent. We have tried other " noses " , but these seem to work the

best for him. There is a humidvent that is vertical (not sure if this is the

one you are using) which does tend to get very wet.

Ethan also has been on Robinul since he was 18 months. We started out with

the liquid form (the pharmacist would make it for us) so that we could try to

get an accurate dose for him. When we figured it out, we switched over to the

tablets. It has worked for us, but you need to be careful with the dosing

because some kids get too dry.

The other thing I could recommend for the excessive secretions is to botox the

saliva glands. This is a new procedure that has been FDA approved for children.

Ethan has had botox twice. The first time, I did see an improvement in his

secretions. The second time, I didn't see any improvement (he had his tonsils

out at the same time so I don't know if that affected it). It only lasts 3-4

months or so, but may be worth exploring. Our insurance paid for it both

times.

Feel free to ask anymore questions.

Jody

Jody - mom to Ethan (ChARGE) and

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