still waiting

worriedmom · Jun 7, 2007

Thanks so do we! that's not a bad idea about bringing it up to our attorney though. I never thought of that..this has all been happening so fast it seems but in another respect see, like forever..if that makes any sense. The doctors did want to order an GI series w/ small bowel test and I did ask if they could do a stool test first which they did agree to do. Alexis also has gallstones, which they have diagnosed genetic, and requires surgery..we have to go for a follow up CT scan of the abd and I asked if she could be sedated, as awful as it sounds she has become so uncooperative for tests lately I'm afraid she'll hurt herself by pulling out the IV for the contrast which has happened before. That was a fight to get him to agree to that because she's so small, he didn't want to sedate her. They are concerned about her weight loss, however she is still in the 20th%, so as long as she is maintaining he will address it at a later date. thank you for listening and for all your information..it has been very helpful. I will speak to my husband about contacting our attorney and see where that takes us. You have been more than helpful, even just to listen to me "vent".

worriedmom · Jun 7, 2007

Thanks so do we! that's not a bad idea about bringing it up to our attorney though. I never thought of that..this has all been happening so fast it seems but in another respect see, like forever..if that makes any sense. The doctors did want to order an GI series w/ small bowel test and I did ask if they could do a stool test first which they did agree to do. Alexis also has gallstones, which they have diagnosed genetic, and requires surgery..we have to go for a follow up CT scan of the abd and I asked if she could be sedated, as awful as it sounds she has become so uncooperative for tests lately I'm afraid she'll hurt herself by pulling out the IV for the contrast which has happened before. That was a fight to get him to agree to that because she's so small, he didn't want to sedate her. They are concerned about her weight loss, however she is still in the 20th%, so as long as she is maintaining he will address it at a later date. thank you for listening and for all your information..it has been very helpful. I will speak to my husband about contacting our attorney and see where that takes us. You have been more than helpful, even just to listen to me "vent".

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

NoExcuses · Jun 7, 2007

there is no good explanation for your physician to deny you an Ambry Amplified genetic test.

it doesn't cost him anything.

i think this experience is goin to be a lesson in being assertive. ask the doctor why not. push him. what's it to him? it's only blood....

don't leave the office until you get your order! THIS IS YOUR CHILD and no one has the child's best interest at heart more than yoU!

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jun 7, 2007

In the past when I've come back from an appointment, frustated because we spend $150+ for an office call only to be told "he has cf, coughing is what they do" or "it's just a virus". DH has reminded me to be assertive because we're the "customer". Irks me that we're PAYING for this abuse.

Learned the hard way, after the coughing incident -- turned out it was bronchitis, to go with my gut feeling and not to take no for an answer. If they don't cooperate at the local clinic, I get on the phone with our primary CF physician in the city and worst case scenario, we take a trip to see him 250 miles away -- haven't had to do that yet...

BTW, the test we requested -- doctor finally agreed to do it, but sent a med student to basically tell us that everything was fine, wouldn't let me see a copy of it, so I had to go to medical records and fill out a written request. Grrrr! Now after every doctor's appointment, lab, xray... I fill out a release of info form, so they send me the actual reports and I can pass the info on to our primary CF doctor in the City. The doctors' notes are always amusing with little comments/digs about how we won't go to the CF clinic locally because of our "germ" concerns <img src="i/expressions/face-icon-small-smile.gif" border="0">

Alyssa · Jun 8, 2007