Seeking some advice

[JennifersHope]

Mayo does do a good job finding mutations if you get the full gene study done.. They have to look at the whole gene.. It took them a little over four weeks but they found my second mutation..

 

[MaeFlower]

Thanks for the info. Vivi's pediatrician called me this afternoon, she has "infiltrates" on her lungs for the 4th time since birth. She also had a c. diff test that did show a toxin, he wants to repeat a stool culture this week. I will keep you all posted. Please pray for Vivien that the Pulmonologist will have the complete panel tested. With no diagnosis of anything, some days I feel as if I'm chasing Unicorns.

 

[MaeFlower]

Thanks for the info. Vivi's pediatrician called me this afternoon, she has "infiltrates" on her lungs for the 4th time since birth. She also had a c. diff test that did show a toxin, he wants to repeat a stool culture this week. I will keep you all posted. Please pray for Vivien that the Pulmonologist will have the complete panel tested. With no diagnosis of anything, some days I feel as if I'm chasing Unicorns.

 

[MaeFlower]

Thanks for the info. Vivi's pediatrician called me this afternoon, she has "infiltrates" on her lungs for the 4th time since birth. She also had a c. diff test that did show a toxin, he wants to repeat a stool culture this week. I will keep you all posted. Please pray for Vivien that the Pulmonologist will have the complete panel tested. With no diagnosis of anything, some days I feel as if I'm chasing Unicorns.

 

[kitomd21]

I will be praying for you and your little one. It's so difficult to see them in the hospital...regardless of age. Our daughter was hospitalized at two-weeks-old. I hope you receive a more definitive cause and course of action soon. I will be thinking of you and Vivien.

 

[kitomd21]

I will be praying for you and your little one. It's so difficult to see them in the hospital...regardless of age. Our daughter was hospitalized at two-weeks-old. I hope you receive a more definitive cause and course of action soon. I will be thinking of you and Vivien.

 

[kitomd21]

I will be praying for you and your little one. It's so difficult to see them in the hospital...regardless of age. Our daughter was hospitalized at two-weeks-old. I hope you receive a more definitive cause and course of action soon. I will be thinking of you and Vivien.

 

[tarheel]

The beginning of your story- failure to thrive, jaundice, GERD- sounds like the beginnings of my story. I was below birth weight until I believe 3 months. My sweat test, however, was very high. I would keep pushing for the full pannel- I was almost diagnosed with biliary atresia (misspelling I think) before they did the sweat test. (The genetics test wasn't even available when I was diagnosed)

 

[tarheel]

The beginning of your story- failure to thrive, jaundice, GERD- sounds like the beginnings of my story. I was below birth weight until I believe 3 months. My sweat test, however, was very high. I would keep pushing for the full pannel- I was almost diagnosed with biliary atresia (misspelling I think) before they did the sweat test. (The genetics test wasn't even available when I was diagnosed)

 

[tarheel]

The beginning of your story- failure to thrive, jaundice, GERD- sounds like the beginnings of my story. I was below birth weight until I believe 3 months. My sweat test, however, was very high. I would keep pushing for the full pannel- I was almost diagnosed with biliary atresia (misspelling I think) before they did the sweat test. (The genetics test wasn't even available when I was diagnosed)