about to go crazy!!

[sdelorenzo]

My nephew had been seeing a cf doctor from the age of two and was not diagnosed until the age of four. It took my daughter's diagnosis to get them to test my nephew. The doctor said he just didn't "look" like he had cf. Looking back he was very thin, chronic cough, and chronic constipation. You would think they would put two and two together. Your son needs more testing. Don't take no for an answer. Just politely "tell" them you want another sweat test and ambry. If you still can't get anywhere, you might need to head to another cf center, a pulmonologist not associated with the clinic and/of find a pediatrician that will get these tests accomplished. They sound valid.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf

 

[Karry]

Oh Heather, I'm sorry you haven't been able to get more testing. How frustrating! I hope you can get the Ambry test or a second sweat test done soon.

I had to beg our GI to run the genetic test on Lucas, he thinks it's pretty unlikely that he has CF. Now I have to just wait for the results.

Good luck and hugs to you.

Karry

 

[Karry]

Oh Heather, I'm sorry you haven't been able to get more testing. How frustrating! I hope you can get the Ambry test or a second sweat test done soon.

I had to beg our GI to run the genetic test on Lucas, he thinks it's pretty unlikely that he has CF. Now I have to just wait for the results.

Good luck and hugs to you.

Karry

 

[Karry]

Oh Heather, I'm sorry you haven't been able to get more testing. How frustrating! I hope you can get the Ambry test or a second sweat test done soon.

I had to beg our GI to run the genetic test on Lucas, he thinks it's pretty unlikely that he has CF. Now I have to just wait for the results.

Good luck and hugs to you.

Karry

 

[Nicole]

If you have the option can you go to a different CF center? We moved to CA in March 05 and took our son to UC Davis for 2 clinic visits. To be honest I knew halfway through the first visit that I was not going to be happy. We switched clinics and we now go to Stanford, which is great by the way. But there are many others to chose from in this area.

 

[Nicole]

If you have the option can you go to a different CF center? We moved to CA in March 05 and took our son to UC Davis for 2 clinic visits. To be honest I knew halfway through the first visit that I was not going to be happy. We switched clinics and we now go to Stanford, which is great by the way. But there are many others to chose from in this area.

 

[Nicole]

If you have the option can you go to a different CF center? We moved to CA in March 05 and took our son to UC Davis for 2 clinic visits. To be honest I knew halfway through the first visit that I was not going to be happy. We switched clinics and we now go to Stanford, which is great by the way. But there are many others to chose from in this area.

 

[Samsmom]

Good luck to everyone who is fighting for answers. It took 12 years of fighting for my daughter before we got a diagnosis. All I can say is DON'T GIVE UP!! If one doc. lets you down, find another. Somewhere out there is a doctor who cares about their patients and not just the dollars they make. Best of luck!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

Good luck to everyone who is fighting for answers. It took 12 years of fighting for my daughter before we got a diagnosis. All I can say is DON'T GIVE UP!! If one doc. lets you down, find another. Somewhere out there is a doctor who cares about their patients and not just the dollars they make. Best of luck!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

Good luck to everyone who is fighting for answers. It took 12 years of fighting for my daughter before we got a diagnosis. All I can say is DON'T GIVE UP!! If one doc. lets you down, find another. Somewhere out there is a doctor who cares about their patients and not just the dollars they make. Best of luck!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mommafirst]

gosh Heather I'm so sorry you are still getting the runaround!! I definitely agree with you that this needs to be pursued. Personally, I'd push to get the official CF center sweat tests done first. They aren't that expensive and won't be invasive to Kaiden. Once you do, you might have some real answers!!<br>
<br>
I know you feel like you are up against a brick wall, but please don't give up. You are doing what is in your son's best interest, and until you have sufficient evidence for a diagnosis or an all-clear, keep pushing!!! <br>
<br>
You asked for some sources, this page <a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pancinsuff.htm">pancreatic insufficiency</a> has a few links to some articles that might help you argue that his insufficiency can still be due to more rare mutations that don't appear on the basic 32 panel!!!!

 

[Mommafirst]

gosh Heather I'm so sorry you are still getting the runaround!! I definitely agree with you that this needs to be pursued. Personally, I'd push to get the official CF center sweat tests done first. They aren't that expensive and won't be invasive to Kaiden. Once you do, you might have some real answers!!<br>
<br>
I know you feel like you are up against a brick wall, but please don't give up. You are doing what is in your son's best interest, and until you have sufficient evidence for a diagnosis or an all-clear, keep pushing!!! <br>
<br>
You asked for some sources, this page <a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pancinsuff.htm">pancreatic insufficiency</a> has a few links to some articles that might help you argue that his insufficiency can still be due to more rare mutations that don't appear on the basic 32 panel!!!!

 

[Mommafirst]

gosh Heather I'm so sorry you are still getting the runaround!! I definitely agree with you that this needs to be pursued. Personally, I'd push to get the official CF center sweat tests done first. They aren't that expensive and won't be invasive to Kaiden. Once you do, you might have some real answers!!<br>
<br>
I know you feel like you are up against a brick wall, but please don't give up. You are doing what is in your son's best interest, and until you have sufficient evidence for a diagnosis or an all-clear, keep pushing!!! <br>
<br>
You asked for some sources, this page <a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/pancinsuff.htm">pancreatic insufficiency</a> has a few links to some articles that might help you argue that his insufficiency can still be due to more rare mutations that don't appear on the basic 32 panel!!!!

 

[amoo74]

Heather,

I really feel for you. I'm sorry you are having such trouble. I would for sure get a second opinion. Then if the doctor still can't give you the answer you think is right, I would ask him what he does think is wrong.

 

[amoo74]

Heather,

I really feel for you. I'm sorry you are having such trouble. I would for sure get a second opinion. Then if the doctor still can't give you the answer you think is right, I would ask him what he does think is wrong.

 

[amoo74]

Heather,

I really feel for you. I'm sorry you are having such trouble. I would for sure get a second opinion. Then if the doctor still can't give you the answer you think is right, I would ask him what he does think is wrong.

 

[julie]

When you have problems like this with your/the local CF accredited center, CONTACT your local CF chapter and/or the CF foundation. They deal with and get involved in situations like this and they (the doctor) should NOT be turning someone away with pancreatic insufficency and a "high on the low scale" sweat test result.

I'd call and ask to speak to the doctor who denied the referral at the CF center. Explain your concernsand state that you understand he may not have CF, but you want a test at an accredited CF center and also want some genetic testing to rule it out.

BE PUSHY!!!!!!!!!!!!!

 

[julie]

When you have problems like this with your/the local CF accredited center, CONTACT your local CF chapter and/or the CF foundation. They deal with and get involved in situations like this and they (the doctor) should NOT be turning someone away with pancreatic insufficency and a "high on the low scale" sweat test result.

I'd call and ask to speak to the doctor who denied the referral at the CF center. Explain your concernsand state that you understand he may not have CF, but you want a test at an accredited CF center and also want some genetic testing to rule it out.

BE PUSHY!!!!!!!!!!!!!

 

[julie]

When you have problems like this with your/the local CF accredited center, CONTACT your local CF chapter and/or the CF foundation. They deal with and get involved in situations like this and they (the doctor) should NOT be turning someone away with pancreatic insufficency and a "high on the low scale" sweat test result.

I'd call and ask to speak to the doctor who denied the referral at the CF center. Explain your concernsand state that you understand he may not have CF, but you want a test at an accredited CF center and also want some genetic testing to rule it out.

BE PUSHY!!!!!!!!!!!!!

 

[heatherrose415]

Thank you ALL SO VERY MUCH!!! You have no idea (actually you probably know all to well) how much these replies mean to me!!

I printed off DOZENS of research to help my argument if there is one with the Dr. And I think after talking to Nicole in PM, we are going to ask to stay at Stanford.

I will let you guys know how it goes!

THANKS!