probably overreacting but i gotta ask

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ChastensDad

New member
ok. i think ive learned about as much on this website lately than i have getting overwhelmed by the doctors, nurses, dietitians, and RT's. so ill ask this question. is the Pulmonologist CF clinic doctors all we need for taking care of our 2 year old with CF? i was thinking maybe she should see a endocrinologist, ENT, (ok i forgot the name for now but ) the intestinal doctor, and anymore that might need to be. ive known for 2 years now and it just seems there is alot more out there than i can learn about. thanks for the help thats coming.

Shane
 
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nobody

New member
For now, The CF clinic doctors should be all you need. They are well versed on the varied complications that arise due to CF. Later, when your little one reaches adulthood is when the other disciplines are needed. I didn't need an endocrynologist etc. until I was 34!

-steve
 
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anonymous

New member
At my son's clinic, Children's Medical Center of Dallas, he sees every Dr. involved with CF. The Psychology specialist comes in, then the resp. tech, nutritionist, social worker, etc... And he can see the gastroenterologist or ENT whenever it's needed (they are right down the hall). I strongly disagree with steves comment on not needing to see those Dr.s until your son is older. My son has been seeing a gastroenterologist, ENT, and Allergist, since he was diagnosed three years ago, at the age of 18months. He does not see them as frequently as his Pulmonologist but they do play an important role in his care. His GI doctor knew more about enzymes and the effects of CF on the digestive system. His ENT decided when my son needed sinus surgery. His Pulmonologist is amazing and we absolutly love him, he is not arrogant and if he is not 100% sure with any of the questions I have he will send me to someone who does.

You are not overreacting, you are being a good parent who wants to learn more about your child's disease. Good luck!
 
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anonymous

New member
YOur CF docs should have access to the expertise of other docs and will put you in touch when they are needed. BUT you do need to make sure to mention non-cf related health issues to the doc on your own to make sure this happens. As long as you are at an acredited CF clinic this should be fine for now.
Debbie
24 w/ CF
 
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Emily65Roses

New member
I didn't start seeing an ENT until I had nasal polyps at age 5. I didn't see a dietician until mid-teens. I haven't started seeing a cardiologist yet (I think that may start at my appointment in June). I've never seen an intestine doctor (though that's probably who my parents dealt with for my meconium ileus at 2 days old).

I would take it one doc at a time. CF docs should be plenty for now. Just add the specialists as new problems arise. That's just my opinion.
 
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NoDayButToday

New member
A CF doctor should be plenty sufficient for now. Most of the other specialists you mentioned (with the exception of maybe a GI doctor), CF patients usually take them on because of complications that arise as CF progresses. It is always a good idea to mention non CF issues to your CF doc, especially if you also have a pediatrician (as some CF clinics like their patients to have).
 
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anonymous

New member
This MAY be ok for now. But way to go for advocating for your child. It's people like you, who keep on thier toes about CF stuff, what else should/could we be doing that helps lift the expectations of hospital staff, to look at the whole picture. As well as, the whole CF'er. I got so tired of my dr only dealing with my #'s and nothing else, so I left the hosptial, left everything I knew and made a huge change. All of which made me happier in the end and gave me a lot of confidence in myself to do what I thought was right.
Good luck and keep up the good work!
kelli
 
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