2 children possible cf

grandmaoftwo

New member
Good Afternoon! My granddaughter is 6 years old and has been seen by several doctors and has had many tests. Originally they said she has CF. Then they changed and said her pancreas wasn't working right and she needed to take enzymes. After seeing another doctor 2 years later because she still wasn't gaining weight even with the enzymes, he said her pancreas was working fine and that she just had chronic growth delay syndrome. She had two episodes of rectal prolapse when she was 3, she has weighed only 31 pounds for the last two years, she now vomits on a monthly basis, she still has issues with constipation and she basically looks like she never eats although she does have a good appetite. Her sweat tests were positive, borderline and negative. Her genetic test was negative. We are taking her to yet another doctor who, based on what my daughter told him, believes she does have CF. Any thoughts or information would be greatly appreciated!!!
 

grandmaoftwo

New member
Good Afternoon! My granddaughter is 6 years old and has been seen by several doctors and has had many tests. Originally they said she has CF. Then they changed and said her pancreas wasn't working right and she needed to take enzymes. After seeing another doctor 2 years later because she still wasn't gaining weight even with the enzymes, he said her pancreas was working fine and that she just had chronic growth delay syndrome. She had two episodes of rectal prolapse when she was 3, she has weighed only 31 pounds for the last two years, she now vomits on a monthly basis, she still has issues with constipation and she basically looks like she never eats although she does have a good appetite. Her sweat tests were positive, borderline and negative. Her genetic test was negative. We are taking her to yet another doctor who, based on what my daughter told him, believes she does have CF. Any thoughts or information would be greatly appreciated!!!
 

JENNYC

New member
I would question which genetics test she had. If she just had a small panel test done, I think I would push to get the full genetics test done. If you look there is a forum started for Welcome Ambry Genetics and I think Steven would be able to help you with this. He is very good. If I were in limbo with my child I would want to know for sure that it is not CF. I had a lot of trouble getting someone to diagnose Abby and wish that I would have found this forum when she was little to get her the help that she needed. I went to dozens of doctors trying to find the answers that none of them could give me, now I know that I am my daughters best advocate. Good luck and I pray that you can find her and yall some relief!!!
 

JENNYC

New member
I would question which genetics test she had. If she just had a small panel test done, I think I would push to get the full genetics test done. If you look there is a forum started for Welcome Ambry Genetics and I think Steven would be able to help you with this. He is very good. If I were in limbo with my child I would want to know for sure that it is not CF. I had a lot of trouble getting someone to diagnose Abby and wish that I would have found this forum when she was little to get her the help that she needed. I went to dozens of doctors trying to find the answers that none of them could give me, now I know that I am my daughters best advocate. Good luck and I pray that you can find her and yall some relief!!!
 

grandmaoftwo

New member
I don't believe she had the full genetics test done. I will definitely look at other forum. Thank you very much for the info...appreciate it. Thanks for the prayers!!
 

grandmaoftwo

New member
I don't believe she had the full genetics test done. I will definitely look at other forum. Thank you very much for the info...appreciate it. Thanks for the prayers!!
 
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