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Just to update this post...my daughter is displaying more symptoms digestively than before. I am frustrated because her bowel symptoms match her deceased brother but yet no doctor will say yes or no. I just need answers. Ideas?
jana
DeltaF508 and p.Arg75Gln mutation is the mutation identified for my daughter Dakota who is 5yrs old. Does anyone else know this mutation? What are anyone's experience medically etc with this? I have posted for Ambry but no one has responded. Thank you!
Jana
My daughter's full gene squencing came back...but its confusing...
A little history is that we had a son (Xander) pass away at 14 months due to CF complications (he had DF508 and a 5t 12tg variant) we assumed since my daughter has shown CF ish symptoms hers would be the same (same parents) but...
My daughter's full gene squencing came back...but its confusing...
A little history is that we had a son (Xander) pass away at 14 months due to CF complications (he had DF508 and a 5t 12tg variant) we assumed since my daughter has shown CF ish symptoms hers would be the same (same parents) but...
I am not sure if anyone remembers me but I was active before we lost my infant son Xander but I withdrew away after his death (grief..ugh) but I find myself needing support because my daughter has been dealing with CF issues and I find myself worried so worried I am totally freaked out over...
We decided on Columbus Ohio and Dr. Allen as Dakota's doctor for her treatment. I am still very nervous to losing another child to this damn disease (sorry for the language but its really how I feel)
We decided on Columbus Ohio and Dr. Allen as Dakota's doctor for her treatment. I am still very nervous to losing another child to this damn disease (sorry for the language but its really how I feel)
We decided on Columbus Ohio and Dr. Allen as Dakota's doctor for her treatment. I am still very nervous to losing another child to this damn disease (sorry for the language but its really how I feel)
Ok CF family,
Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try...
Ok CF family,
Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have that) or 2) Try...
Ok CF family,
<br />
<br />Baby Xander went to Dayton Children's Hospital for his CF care prior to his death. Some of you know my distaste of his CF doctor from chats with me. Now Dakota diagnosis prompts us to decide to 1) return to Dayton for care (not under same doc because I won't have...
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