Max was diagnosed as a result of newborn screening, but we didn't get the official diagnosis until about 2 months later when the ambry results came back. When we were first contacted, I was a little hopeful that the high numbers just meant that he was a carrier since my husband had been told that he wasn't a carrier (we knew that I was). Well ... little did I know that he had only been tested for the 4 most common mutations (not that I knew that there was even more than 1). I can't tell you how many times I licked him (and then my 3 year old to compare) during the agonizing wait - each time realizing that he tasted quite salty!
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What age was your child at diagnosis?
- Thread starter MargaritaChic
- Start date
Max was diagnosed as a result of newborn screening, but we didn't get the official diagnosis until about 2 months later when the ambry results came back. When we were first contacted, I was a little hopeful that the high numbers just meant that he was a carrier since my husband had been told that he wasn't a carrier (we knew that I was). Well ... little did I know that he had only been tested for the 4 most common mutations (not that I knew that there was even more than 1). I can't tell you how many times I licked him (and then my 3 year old to compare) during the agonizing wait - each time realizing that he tasted quite salty!
Max was diagnosed as a result of newborn screening, but we didn't get the official diagnosis until about 2 months later when the ambry results came back. When we were first contacted, I was a little hopeful that the high numbers just meant that he was a carrier since my husband had been told that he wasn't a carrier (we knew that I was). Well ... little did I know that he had only been tested for the 4 most common mutations (not that I knew that there was even more than 1). I can't tell you how many times I licked him (and then my 3 year old to compare) during the agonizing wait - each time realizing that he tasted quite salty!
Max was diagnosed as a result of newborn screening, but we didn't get the official diagnosis until about 2 months later when the ambry results came back. When we were first contacted, I was a little hopeful that the high numbers just meant that he was a carrier since my husband had been told that he wasn't a carrier (we knew that I was). Well ... little did I know that he had only been tested for the 4 most common mutations (not that I knew that there was even more than 1). I can't tell you how many times I licked him (and then my 3 year old to compare) during the agonizing wait - each time realizing that he tasted quite salty!
Max was diagnosed as a result of newborn screening, but we didn't get the official diagnosis until about 2 months later when the ambry results came back. When we were first contacted, I was a little hopeful that the high numbers just meant that he was a carrier since my husband had been told that he wasn't a carrier (we knew that I was). Well ... little did I know that he had only been tested for the 4 most common mutations (not that I knew that there was even more than 1). I can't tell you how many times I licked him (and then my 3 year old to compare) during the agonizing wait - each time realizing that he tasted quite salty!
shimmereestar
New member
Ellie was diagnosed officially at 8.5 weeks old. She was treated as if she had it the previous three weeks. We were in the hospital for nine days running tests for failure to thrive (similar to your story carriepathy) Angela, it was similar for us. We knew my husband was a carrier, but I wasn't (so I thought). I licked Ellie countless times too.
shimmereestar
New member
Ellie was diagnosed officially at 8.5 weeks old. She was treated as if she had it the previous three weeks. We were in the hospital for nine days running tests for failure to thrive (similar to your story carriepathy) Angela, it was similar for us. We knew my husband was a carrier, but I wasn't (so I thought). I licked Ellie countless times too.
shimmereestar
New member
Ellie was diagnosed officially at 8.5 weeks old. She was treated as if she had it the previous three weeks. We were in the hospital for nine days running tests for failure to thrive (similar to your story carriepathy) Angela, it was similar for us. We knew my husband was a carrier, but I wasn't (so I thought). I licked Ellie countless times too.
shimmereestar
New member
Ellie was diagnosed officially at 8.5 weeks old. She was treated as if she had it the previous three weeks. We were in the hospital for nine days running tests for failure to thrive (similar to your story carriepathy) Angela, it was similar for us. We knew my husband was a carrier, but I wasn't (so I thought). I licked Ellie countless times too.
shimmereestar
New member
Ellie was diagnosed officially at 8.5 weeks old. She was treated as if she had it the previous three weeks. We were in the hospital for nine days running tests for failure to thrive (similar to your story carriepathy) Angela, it was similar for us. We knew my husband was a carrier, but I wasn't (so I thought). I licked Ellie countless times too.
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M
Mommafirst
Guest
Alyssa was born with a meconium plug (not illeus) and it tripped a concern of the doctors. She was diagnosed at 5 months after several borderline sweat tests and a long 8 week wait to get the Ambry back.
M
Mommafirst
Guest
Alyssa was born with a meconium plug (not illeus) and it tripped a concern of the doctors. She was diagnosed at 5 months after several borderline sweat tests and a long 8 week wait to get the Ambry back.
M
Mommafirst
Guest
Alyssa was born with a meconium plug (not illeus) and it tripped a concern of the doctors. She was diagnosed at 5 months after several borderline sweat tests and a long 8 week wait to get the Ambry back.
M
Mommafirst
Guest
Alyssa was born with a meconium plug (not illeus) and it tripped a concern of the doctors. She was diagnosed at 5 months after several borderline sweat tests and a long 8 week wait to get the Ambry back.
M
Mommafirst
Guest
Alyssa was born with a meconium plug (not illeus) and it tripped a concern of the doctors. She was diagnosed at 5 months after several borderline sweat tests and a long 8 week wait to get the Ambry back.
Emily was born with meconium illeus. For her first 4 days she ate normally, but passed only little bits of mucousy stool. They finally did abdominal x-rays on the 4th day and she was transferred to Children's Hospital. We started treating the cf that night (Enzymes, and CPT within the next day or two). She did not need surgery to resolve the MI. Two weeks later, the newborn screenig result confirmed what we already knew.
Emily was born with meconium illeus. For her first 4 days she ate normally, but passed only little bits of mucousy stool. They finally did abdominal x-rays on the 4th day and she was transferred to Children's Hospital. We started treating the cf that night (Enzymes, and CPT within the next day or two). She did not need surgery to resolve the MI. Two weeks later, the newborn screenig result confirmed what we already knew.
Emily was born with meconium illeus. For her first 4 days she ate normally, but passed only little bits of mucousy stool. They finally did abdominal x-rays on the 4th day and she was transferred to Children's Hospital. We started treating the cf that night (Enzymes, and CPT within the next day or two). She did not need surgery to resolve the MI. Two weeks later, the newborn screenig result confirmed what we already knew.
Emily was born with meconium illeus. For her first 4 days she ate normally, but passed only little bits of mucousy stool. They finally did abdominal x-rays on the 4th day and she was transferred to Children's Hospital. We started treating the cf that night (Enzymes, and CPT within the next day or two). She did not need surgery to resolve the MI. Two weeks later, the newborn screenig result confirmed what we already knew.
Emily was born with meconium illeus. For her first 4 days she ate normally, but passed only little bits of mucousy stool. They finally did abdominal x-rays on the 4th day and she was transferred to Children's Hospital. We started treating the cf that night (Enzymes, and CPT within the next day or two). She did not need surgery to resolve the MI. Two weeks later, the newborn screenig result confirmed what we already knew.