thought he had celiacs, found out he had CF

[brematt]

Wow! Thanks for the advice about having my daughter tested. I've been sucked into the trap of assuming she doesn't have cf because she's barely ever been sick. Ironic that I'd fall into that trap when my son went undx for 11 years! I'll talk to the CF dr. next visit.
As far as dealing with peds, we've decided to leave the one we've had for 1 month. He questioned my son's diagnois b/c he had more GI symptoms than lung ones. I actually had to explain to him that there is variation of lung function among CF patients. I'm currently looking for someone who will trust my judgement and include me in decision making re: illness. I know when my son is sick! Luckily the CF clinic in Spokane (3 hrs away) told me if I had any problems I could call them.

 

[brematt]

Wow! Thanks for the advice about having my daughter tested. I've been sucked into the trap of assuming she doesn't have cf because she's barely ever been sick. Ironic that I'd fall into that trap when my son went undx for 11 years! I'll talk to the CF dr. next visit.
As far as dealing with peds, we've decided to leave the one we've had for 1 month. He questioned my son's diagnois b/c he had more GI symptoms than lung ones. I actually had to explain to him that there is variation of lung function among CF patients. I'm currently looking for someone who will trust my judgement and include me in decision making re: illness. I know when my son is sick! Luckily the CF clinic in Spokane (3 hrs away) told me if I had any problems I could call them.

 

[Alyssa]

If Spokane is 3 hours away... which direction from there are you? Are you near Seattle? I know Children's in Seattle is used to working with people from all over the state. Once you are established with them, and need something over the phone, they would most likely accommodate you when possible.

 

[Alyssa]

If Spokane is 3 hours away... which direction from there are you? Are you near Seattle? I know Children's in Seattle is used to working with people from all over the state. Once you are established with them, and need something over the phone, they would most likely accommodate you when possible.

 

[Alyssa]

If Spokane is 3 hours away... which direction from there are you? Are you near Seattle? I know Children's in Seattle is used to working with people from all over the state. Once you are established with them, and need something over the phone, they would most likely accommodate you when possible.

 

[ddawes27]

Brematt.......Ask your CF clinician which MD's in your area they suggest, or have experience with. As for me (I am a nurse) My CF clinician has never dealt with my son's pediatrician. But my son loves his pediatrician, for me, she is the one who initiated the episode by seeing a polyp deep in his nose (where he trusts her to look). I think she is the best. Anyways,
Also......As a nurse........I need to tell you that when you take your child to the doctor with your own diagnosis in mind.........you will only give your MD the symptoms you have been thinking about which will cause him to be "pidgeon- holed into believing what you believe. Never take your child to the Md with ideas.........Tell them symptoms and let their education decide what to do...........that is what they are for.

 

[ddawes27]

Brematt.......Ask your CF clinician which MD's in your area they suggest, or have experience with. As for me (I am a nurse) My CF clinician has never dealt with my son's pediatrician. But my son loves his pediatrician, for me, she is the one who initiated the episode by seeing a polyp deep in his nose (where he trusts her to look). I think she is the best. Anyways,
Also......As a nurse........I need to tell you that when you take your child to the doctor with your own diagnosis in mind.........you will only give your MD the symptoms you have been thinking about which will cause him to be "pidgeon- holed into believing what you believe. Never take your child to the Md with ideas.........Tell them symptoms and let their education decide what to do...........that is what they are for.

 

[ddawes27]

Brematt.......Ask your CF clinician which MD's in your area they suggest, or have experience with. As for me (I am a nurse) My CF clinician has never dealt with my son's pediatrician. But my son loves his pediatrician, for me, she is the one who initiated the episode by seeing a polyp deep in his nose (where he trusts her to look). I think she is the best. Anyways,
Also......As a nurse........I need to tell you that when you take your child to the doctor with your own diagnosis in mind.........you will only give your MD the symptoms you have been thinking about which will cause him to be "pidgeon- holed into believing what you believe. Never take your child to the Md with ideas.........Tell them symptoms and let their education decide what to do...........that is what they are for.