Frustrated

F

farmfamily

New member
You would think that after 13 years of this I'd get use to it, but I'm not. I'm so frustrated. Does anybody else get frustrated that they can't ever second guess the doctor's at clinic visits? We had clinic yesterday (250 mile one way trip). I don't know how many times we gone up with the kids thinking they doing fine and we're blown away when they don't agree and suggest hospitalization for a tune up. Yesterday we went up and for the last several weeks we've been concerned about our 13 year old; recurrent respiratory infections, lots of coughing and headaches. He has dragged for 2 weeks now. We had x-rays and full volume PFT's done. When it came time to see the Dr I felt like all they did was go through the motions and check off all the boxes. They were so proud of his weight gain and growth but none of the issues we where concerned with were even addressed. PFT's weren't great but they made all kinds of excuses. Meantime I'm walking a fine line, my teenager is really getting mad at me because the more I tell the Dr's about how he's been feeling he says "I'm wanting him in the hospital". But I want the Dr's to have all the information possible.
Does anyone else deal with this? It's seems to me as long as they're growing they're fine no matter that he's coughing his toes up!!!

Terri
Mom to 3 17/no CF, 13w/cf, 9w/cf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
F

farmfamily

New member
You would think that after 13 years of this I'd get use to it, but I'm not. I'm so frustrated. Does anybody else get frustrated that they can't ever second guess the doctor's at clinic visits? We had clinic yesterday (250 mile one way trip). I don't know how many times we gone up with the kids thinking they doing fine and we're blown away when they don't agree and suggest hospitalization for a tune up. Yesterday we went up and for the last several weeks we've been concerned about our 13 year old; recurrent respiratory infections, lots of coughing and headaches. He has dragged for 2 weeks now. We had x-rays and full volume PFT's done. When it came time to see the Dr I felt like all they did was go through the motions and check off all the boxes. They were so proud of his weight gain and growth but none of the issues we where concerned with were even addressed. PFT's weren't great but they made all kinds of excuses. Meantime I'm walking a fine line, my teenager is really getting mad at me because the more I tell the Dr's about how he's been feeling he says "I'm wanting him in the hospital". But I want the Dr's to have all the information possible.
Does anyone else deal with this? It's seems to me as long as they're growing they're fine no matter that he's coughing his toes up!!!

Terri
Mom to 3 17/no CF, 13w/cf, 9w/cf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
A

anonymous

New member
We go to a local nonaccredited CF clinic and we get the same treatment. When DS was a few months old he was coughing so hard he'd vomit up his formula. When I took him to the local CF clinic I was told "that's what cfers do, they cough" and the projectile vomiting was just "spit up". DH and I were fighting about it 'cuz he thought I was depressed, looking for attention and wanted DS to be sick 'cuz he believed what the doctor was telling him 'cuz he was a CF doctor. Well we go to the accreditted CF clinic 4 hours drive away and the doctor yells at us -- culture report showed DS has cultured a nasty bug and had bronchitis!! And didn't we know he could've ended up in the hospital if we hadn't taken this seriously -- prescribed Tobi, Septra and told us if things didn't clear up in two weeks he'd try Cipro. It's just so aggravating when we're treated like idiots when we KNOW something isn't quite right.
 
A

anonymous

New member
We go to a local nonaccredited CF clinic and we get the same treatment. When DS was a few months old he was coughing so hard he'd vomit up his formula. When I took him to the local CF clinic I was told "that's what cfers do, they cough" and the projectile vomiting was just "spit up". DH and I were fighting about it 'cuz he thought I was depressed, looking for attention and wanted DS to be sick 'cuz he believed what the doctor was telling him 'cuz he was a CF doctor. Well we go to the accreditted CF clinic 4 hours drive away and the doctor yells at us -- culture report showed DS has cultured a nasty bug and had bronchitis!! And didn't we know he could've ended up in the hospital if we hadn't taken this seriously -- prescribed Tobi, Septra and told us if things didn't clear up in two weeks he'd try Cipro. It's just so aggravating when we're treated like idiots when we KNOW something isn't quite right.
 
E

Emily65Roses

New member
A lot of doctors have trouble with this, they go by numbers only. If his weight's up, and his PFTs are somewhat normal, then nothing else matters. You need to be almost rude (if necessary) to make sure your point gets across, or they won't listen. Doctors tend to enjoy thinking they're always right. You need to be your child's advocate and speak up and don't take no for an answer... otherwise, I might suggest trying to find another doctor.
 
E

Emily65Roses

New member
A lot of doctors have trouble with this, they go by numbers only. If his weight's up, and his PFTs are somewhat normal, then nothing else matters. You need to be almost rude (if necessary) to make sure your point gets across, or they won't listen. Doctors tend to enjoy thinking they're always right. You need to be your child's advocate and speak up and don't take no for an answer... otherwise, I might suggest trying to find another doctor.
 
J

JazzysMom

New member
I agree with Emily. Parents (especially new to the CF scene) dont want to be a thorn in the side of the doctor or office staff. Well DARN it......be that thorn. Be the biggest, sharpest thorn on the bush because it is how the rose gets protected. Love my anilagy! LOL!.....Seriously....A doctor is pressed for time, yes, we all know that, but that doesnt make it right that U dont push the issues that they seem to dismiss. If it concerns U ask, push until U feel comfortable with the responses. Just because someones weight or pfts are slipping doesnt mean they HAVE to go into the hospital. If it is caught early & monitored chances are good it can be taken care of at home. But if its left unaddressed there is a greater chance of major intervention. Logic dictates that. So what if you become known as "that pushy parent". At least U have a better chance of being the "pushy parent" of a 107 year old. Alright maybe not 107 because that would make U quite old also, but U get my point!
 
J

JazzysMom

New member
I agree with Emily. Parents (especially new to the CF scene) dont want to be a thorn in the side of the doctor or office staff. Well DARN it......be that thorn. Be the biggest, sharpest thorn on the bush because it is how the rose gets protected. Love my anilagy! LOL!.....Seriously....A doctor is pressed for time, yes, we all know that, but that doesnt make it right that U dont push the issues that they seem to dismiss. If it concerns U ask, push until U feel comfortable with the responses. Just because someones weight or pfts are slipping doesnt mean they HAVE to go into the hospital. If it is caught early & monitored chances are good it can be taken care of at home. But if its left unaddressed there is a greater chance of major intervention. Logic dictates that. So what if you become known as "that pushy parent". At least U have a better chance of being the "pushy parent" of a 107 year old. Alright maybe not 107 because that would make U quite old also, but U get my point!
 
E

Emily65Roses

New member
Keep in mind also... you are employing them, not the other way around. People tend to forget that sometimes with doctor/patient relationships. You have every right to complain if something is not going the way you think it should be.
 
E

Emily65Roses

New member
Keep in mind also... you are employing them, not the other way around. People tend to forget that sometimes with doctor/patient relationships. You have every right to complain if something is not going the way you think it should be.
 
A

anonymous

New member
My son was put on Cipro when he was younger--and he had a horrible reaction to it. My sons doctors are also a pain in the butt--we wanted to get my son the vest and they wouldn't prescribe it for him. So we went to the regular pediatricians office and they prescribed. That upset his CF doctors and they wrote my other doctor a letter wanting them to make us stop using it. So we had to send it back. Now my son is 3 yrs old, the size of a normal 4 yr old he is 39 lbs and 39 1/2 inches. They say he is too small and they dont make it for children his size. Any input?
 
A

anonymous

New member
My son was put on Cipro when he was younger--and he had a horrible reaction to it. My sons doctors are also a pain in the butt--we wanted to get my son the vest and they wouldn't prescribe it for him. So we went to the regular pediatricians office and they prescribed. That upset his CF doctors and they wrote my other doctor a letter wanting them to make us stop using it. So we had to send it back. Now my son is 3 yrs old, the size of a normal 4 yr old he is 39 lbs and 39 1/2 inches. They say he is too small and they dont make it for children his size. Any input?
 
A

anonymous

New member
Has anyone else had the issue of calling the regular doctor because your child is sick and they tell you to call the CF doctors and then the CF doctors tell you to call your pediatrician, and then you end up in the ER because no one wants to see them. The only time the CF doctors want to see them is for their research, they dont want sick kids in the doctors office.
 
A

anonymous

New member
Has anyone else had the issue of calling the regular doctor because your child is sick and they tell you to call the CF doctors and then the CF doctors tell you to call your pediatrician, and then you end up in the ER because no one wants to see them. The only time the CF doctors want to see them is for their research, they dont want sick kids in the doctors office.
 
A

anonymous

New member
As far as getting a new Dr is easier said than done. At least as far as the Cf Care center goes. As of now we travel 250 miles one way, the next closest; 500 miles!
 
A

anonymous

New member
As far as getting a new Dr is easier said than done. At least as far as the Cf Care center goes. As of now we travel 250 miles one way, the next closest; 500 miles!
 
J

jaybird

Guest
in response to 3 y.o. using a vest--we nagged our pulm dr. until he prescribed Derek the vest at 18 months old. he is 31" and 25 pounds and the vest works great.
 
J

jaybird

Guest
in response to 3 y.o. using a vest--we nagged our pulm dr. until he prescribed Derek the vest at 18 months old. he is 31" and 25 pounds and the vest works great.
 
You must log in or register to reply here.
Top