Seeking some advice

JennifersHope

New member
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

New member
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

New member
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

New member
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

New member
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

New member
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

New member
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.
 
T

tarheel

Guest
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)
 
T

tarheel

Guest
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)
 
T

tarheel

Guest
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)
 
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