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Question
- Thread starter anonymous
- Start date
Purplelungs
New member
Not likely. Your son probably has the gene just not a common one that they didnt test for. I would go to a acredited CF center if you havent already. They can get you the facts on everything and give your grandbaby the right treatment. Some doctors are clueless when it comes to cf, even though they mean well they dont do to good with CF patient treatment.
Amanda
Amanda
Purplelungs
New member
that is really small.....please do get him to a cf center if you havent already. it would be best.
I will see if the place they are taking him is a CF center. Thanks. I worry about him so much being so small. I wonder if he is even going to make it. He is sooo thin, has no fat anywhere, no rear, his face is gaunt and tight. I really am in shock still the whole thing is so sad.
I dont know if this has already been recommended or not but you can look for a CF accredited center at www.cff.org. Please please do get him to an accredited center. And please keep us updated or come back as often as you need if you have additional questions or problems. there is likely somebody on this site who has already "been there, done that" and who can offer some assistance.
And to answer your question, I can't not say definitavely NO, the wife couldn't have passed two genes because there have been some strange debates about 2 mutations on the same chromosome sort of thing-but, it is very unlikely and I think that they should talk to a genetic counselor before drawing any conclusions or being satisified with the answer they were given. But that being said, things in life have a way of mutating and evolving (and yes I am a christian, evolution of things just seems to be obvious-lifeform, plants...) so this may be a new type of CF mutation-which throws a wrench in the works. But, I would definately have them talk to a genetic counselor. I myself am going to be seeing one in the next few weeks or so, and I plan to ask those questions-for curiosity's sake.
take care and please let us know how things go!
Julie (wife to Mark 24 w/CF)
And to answer your question, I can't not say definitavely NO, the wife couldn't have passed two genes because there have been some strange debates about 2 mutations on the same chromosome sort of thing-but, it is very unlikely and I think that they should talk to a genetic counselor before drawing any conclusions or being satisified with the answer they were given. But that being said, things in life have a way of mutating and evolving (and yes I am a christian, evolution of things just seems to be obvious-lifeform, plants...) so this may be a new type of CF mutation-which throws a wrench in the works. But, I would definately have them talk to a genetic counselor. I myself am going to be seeing one in the next few weeks or so, and I plan to ask those questions-for curiosity's sake.
take care and please let us know how things go!
Julie (wife to Mark 24 w/CF)
NoDayButToday
New member
I would advise getting the entire family (your son, daughter in law, and little grandson) tested with the Ambry genetics test. It is expensive, but in this case I would hope insurance would cover it. It tests for many mutations (something like 96% of them), and will give you a definitive answer to many things. Good luck; I hope your grandson chubbies up!