1st Appointment Clinic Run-Around?

[ejwiegert]

Still haven't heard from the enzyme test. Apparently, they had to send the BM to a new lab because of our insurance and I was told that if I didn't hear by Monday, to call. Not a problem. Can handle that.

I'm getting the run-around while trying to make an initial appointment for Abby at the clinic. I finally got someone today on the phone and they are "checking into" whether or not they can see her since she has a prenatal diagnosis and not a clinical diagnosis of CF. I'm confused. May be the fact Abby's a night owl and parties all night, but I fail to see the difference. Maybe I should have my pediatrician call them as a referral. Maybe that is the issue...there is no real referral here other than the Perinatal OB telling us that is where we need to go.

Suggestions? Ideas? I just want to do what is right for Abby. Even if we get there and they just want to "watch" her for the next few years, I would feel better about that than not going at all and just "watching" it myself. Am I being paranoid about her health here?

Emily

 

[Ratatosk]

If you can get an appoinment scheduled, get her in and worry about referrals, etc. after the fact. If it's a matter of not being able to get thru to the doctor because of the appointment desk -- ask to talk to the doctor's nurse or the doctor him/herself. Abby's health, keeping her healthy by being proactive is probably the most important issue. We were told it's good to being proper lung care (CPT) early on. CFers are born with normal lungs but eventually the majority of them are going to have lung problems. Maybe that's not the case with Abby's mutation. We found that doing CPT early on with DS actually calms him. Sometimes he falls asleep. Friend of mine's granddaughter who was diagnosed at 18 months -- screamed, fought and struggled for weeks when they first had to do it. DIdn't understand why her parents were "beating her" <img src="i/expressions/face-icon-small-sad.gif" border="0">

Currently we go to an accreditted clinic in the City twice a year; however, our insurance considers that going out of network. We can't get a referral from our primary, in-network clinic because they have a non-accreditted CF clinic and feel their program is adequate. Right now it's not that big of an issue because 2-4 appointments in the City isn't that big of a deal -- I think the amount out of pocket we pay is nominal considering the big picture. And actually, when I compare the bills in-network vs. out of network -- I think we're charged a LOT less at the out of network clinic for service.

 

[ejwiegert]

Thanks for the advice. Will keep up aggrivating them for an appointment! They are really nice folks, it just seemed odd to me that was the reason for putting me on hold and telling me that they'd call back when they had an answer and could schedule us.

 

[folione]

The pediatrician might be a useful route to go. My son was diagnosed via sweat test at the hospital with the CF clinic - but when we called to make his 1st appointment the front desk person making appointments said the soonest available was 2 weeks later. When we told the pediatrician, he said the desk person clearly had no clue so he called and talked to the head of the clinic and our appointment was for the next morning.

 

[Ratatosk]

Just seems rather odd, because didn't you meet with these people prior to Abby's birth? Just keep pushing and asking questions.

 

[ejwiegert]

Yes! I did go visit them before Abby was born. Maybe I should have set-up her appointment then!

I finally got a call back this evening to set-up her appointment. We are going on September 12. After consulting with the doctor and the RN that I have been emailing/communicating with, since she is not symptomatic they felt the 12th was soon enough. I was told that if anything did seem off or if our pediatrician feels it is necessary, we'll up the first appointment date.

Thank you all for your rallying behind me!

Em