Another damaging misdiagnosis...

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ReneeP

New member
After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then...

Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was convinced she had appendicitis. Her white blood count was 19,000. But the CT Scan didn't show anything. The ER dr admitted her for overnight observation but the pediatrician who came in the next morning blew it off and released her Saturday morning.

Monday I called our CF doctor who said I need to get Kacie back in ASAP. It sounds like her appendix had ruptured. The CF Center is 6 hours away so she didn't want me to risk driving that far. We went to the local dr who spoke to the CF doctor on the phone. After a long conversation, the local dr decided not to operate, but rather to wait it out. The CF dr told me she was very uncomfortable with that, but being that we are so far away, there is no choice.

So, we waited...and she got better. Or so we thought. From Tuesday until Thursday she was fine. Then last night she came to me screaming again. We ended up back in the ER this morning only to find out that her appendix had ruptured (a week or so ago based on the surgeon's opinion). So now she is laying in a hospital bed on IV antibiotics for the next 10 days. She is in so much pain. They removed the appendix and said she was full of infection...

It's so frustrating. She suffered so much needless pain...not to mention the risk she now has of infection... ARRGGG!
 
R

ReneeP

New member
After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then...

Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was convinced she had appendicitis. Her white blood count was 19,000. But the CT Scan didn't show anything. The ER dr admitted her for overnight observation but the pediatrician who came in the next morning blew it off and released her Saturday morning.

Monday I called our CF doctor who said I need to get Kacie back in ASAP. It sounds like her appendix had ruptured. The CF Center is 6 hours away so she didn't want me to risk driving that far. We went to the local dr who spoke to the CF doctor on the phone. After a long conversation, the local dr decided not to operate, but rather to wait it out. The CF dr told me she was very uncomfortable with that, but being that we are so far away, there is no choice.

So, we waited...and she got better. Or so we thought. From Tuesday until Thursday she was fine. Then last night she came to me screaming again. We ended up back in the ER this morning only to find out that her appendix had ruptured (a week or so ago based on the surgeon's opinion). So now she is laying in a hospital bed on IV antibiotics for the next 10 days. She is in so much pain. They removed the appendix and said she was full of infection...

It's so frustrating. She suffered so much needless pain...not to mention the risk she now has of infection... ARRGGG!
 
R

ReneeP

New member
After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then...

Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was convinced she had appendicitis. Her white blood count was 19,000. But the CT Scan didn't show anything. The ER dr admitted her for overnight observation but the pediatrician who came in the next morning blew it off and released her Saturday morning.

Monday I called our CF doctor who said I need to get Kacie back in ASAP. It sounds like her appendix had ruptured. The CF Center is 6 hours away so she didn't want me to risk driving that far. We went to the local dr who spoke to the CF doctor on the phone. After a long conversation, the local dr decided not to operate, but rather to wait it out. The CF dr told me she was very uncomfortable with that, but being that we are so far away, there is no choice.

So, we waited...and she got better. Or so we thought. From Tuesday until Thursday she was fine. Then last night she came to me screaming again. We ended up back in the ER this morning only to find out that her appendix had ruptured (a week or so ago based on the surgeon's opinion). So now she is laying in a hospital bed on IV antibiotics for the next 10 days. She is in so much pain. They removed the appendix and said she was full of infection...

It's so frustrating. She suffered so much needless pain...not to mention the risk she now has of infection... ARRGGG!
 
R

ReneeP

New member
After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then...

Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was convinced she had appendicitis. Her white blood count was 19,000. But the CT Scan didn't show anything. The ER dr admitted her for overnight observation but the pediatrician who came in the next morning blew it off and released her Saturday morning.

Monday I called our CF doctor who said I need to get Kacie back in ASAP. It sounds like her appendix had ruptured. The CF Center is 6 hours away so she didn't want me to risk driving that far. We went to the local dr who spoke to the CF doctor on the phone. After a long conversation, the local dr decided not to operate, but rather to wait it out. The CF dr told me she was very uncomfortable with that, but being that we are so far away, there is no choice.

So, we waited...and she got better. Or so we thought. From Tuesday until Thursday she was fine. Then last night she came to me screaming again. We ended up back in the ER this morning only to find out that her appendix had ruptured (a week or so ago based on the surgeon's opinion). So now she is laying in a hospital bed on IV antibiotics for the next 10 days. She is in so much pain. They removed the appendix and said she was full of infection...

It's so frustrating. She suffered so much needless pain...not to mention the risk she now has of infection... ARRGGG!
 
R

ReneeP

New member
After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then...
<br />
<br />Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was convinced she had appendicitis. Her white blood count was 19,000. But the CT Scan didn't show anything. The ER dr admitted her for overnight observation but the pediatrician who came in the next morning blew it off and released her Saturday morning.
<br />
<br />Monday I called our CF doctor who said I need to get Kacie back in ASAP. It sounds like her appendix had ruptured. The CF Center is 6 hours away so she didn't want me to risk driving that far. We went to the local dr who spoke to the CF doctor on the phone. After a long conversation, the local dr decided not to operate, but rather to wait it out. The CF dr told me she was very uncomfortable with that, but being that we are so far away, there is no choice.
<br />
<br />So, we waited...and she got better. Or so we thought. From Tuesday until Thursday she was fine. Then last night she came to me screaming again. We ended up back in the ER this morning only to find out that her appendix had ruptured (a week or so ago based on the surgeon's opinion). So now she is laying in a hospital bed on IV antibiotics for the next 10 days. She is in so much pain. They removed the appendix and said she was full of infection...
<br />
<br />It's so frustrating. She suffered so much needless pain...not to mention the risk she now has of infection... ARRGGG!
 
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robert321

New member
honestly this is somewhat not uncommon with cfers, the mucus everywhere kind of isolates the infection and the different bacterias when it ruptures so it shows different signs or something like that, there was a post about it a while back, one of the people was talking about how the dr was in doing some other surgury and found the shriveled up appendix where it had ruptured a long time ago
 
R

robert321

New member
honestly this is somewhat not uncommon with cfers, the mucus everywhere kind of isolates the infection and the different bacterias when it ruptures so it shows different signs or something like that, there was a post about it a while back, one of the people was talking about how the dr was in doing some other surgury and found the shriveled up appendix where it had ruptured a long time ago
 
R

robert321

New member
honestly this is somewhat not uncommon with cfers, the mucus everywhere kind of isolates the infection and the different bacterias when it ruptures so it shows different signs or something like that, there was a post about it a while back, one of the people was talking about how the dr was in doing some other surgury and found the shriveled up appendix where it had ruptured a long time ago
 
R

robert321

New member
honestly this is somewhat not uncommon with cfers, the mucus everywhere kind of isolates the infection and the different bacterias when it ruptures so it shows different signs or something like that, there was a post about it a while back, one of the people was talking about how the dr was in doing some other surgury and found the shriveled up appendix where it had ruptured a long time ago
 
R

robert321

New member
honestly this is somewhat not uncommon with cfers, the mucus everywhere kind of isolates the infection and the different bacterias when it ruptures so it shows different signs or something like that, there was a post about it a while back, one of the people was talking about how the dr was in doing some other surgury and found the shriveled up appendix where it had ruptured a long time ago
 
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TobysMom

New member
wow, i am so sorry for all of your troubles that you are going through!!

my son had a meconium ilius when he was born so they had to surgically remove it and luckily removed his appendix while they were inside his little itty bitty tummy.

I am glad they did that because I understood from the comment above mine, that it is common for the appendix to rupture in CFers?
 
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TobysMom

New member
wow, i am so sorry for all of your troubles that you are going through!!

my son had a meconium ilius when he was born so they had to surgically remove it and luckily removed his appendix while they were inside his little itty bitty tummy.

I am glad they did that because I understood from the comment above mine, that it is common for the appendix to rupture in CFers?
 
T

TobysMom

New member
wow, i am so sorry for all of your troubles that you are going through!!

my son had a meconium ilius when he was born so they had to surgically remove it and luckily removed his appendix while they were inside his little itty bitty tummy.

I am glad they did that because I understood from the comment above mine, that it is common for the appendix to rupture in CFers?
 
T

TobysMom

New member
wow, i am so sorry for all of your troubles that you are going through!!

my son had a meconium ilius when he was born so they had to surgically remove it and luckily removed his appendix while they were inside his little itty bitty tummy.

I am glad they did that because I understood from the comment above mine, that it is common for the appendix to rupture in CFers?
 
T

TobysMom

New member
wow, i am so sorry for all of your troubles that you are going through!!
<br />
<br />my son had a meconium ilius when he was born so they had to surgically remove it and luckily removed his appendix while they were inside his little itty bitty tummy.
<br />
<br />I am glad they did that because I understood from the comment above mine, that it is common for the appendix to rupture in CFers?
 
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