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CF Parent 2
At this point in time, we don't know if either parent is showing any symptoms. We also don't know what type of screening either had to discover their mutations. It is important that they understand that it is still possible that either or both of them could have CF. When people...
Her question was "could my son have CF and could something have been missed on the newborn screening". The answer is HELL YES. 32 out of almost 2000 and making a decision based upon that??
The world is full of Doctors who cant spell CYSTIC FIBROSIS much less DX or treat it. I would "PUSH"...
Love:
This Mom is 28, many of us are Dx well after the age of 28. She talks about a "simple blood screen", I believe that she should be fully informed and not be mislead as to the "quality" of the testing that has been done.
FYI the test was done in 2007 in Florida.
As you know, I don't...
It is important to understand that there are almost 2000 known mutations, any two will cause CF. It is also important to understand that there are many levels of CF screenings. Newborn screenings are usually ONLY for the most common 32 mutations. More extensive testing is ONLY for the most...
I have been told, by a few CF specialists, that a small amount of blood is normal. If it gets to the quantity of 8 oz, you should go to the ER where your CF Clinic is located.
Bill
When us CFers cough and swallow mucus, even in our sleep, it goes into the stomach, mixes with food and goes into the colon. This becomes a glue like substance and sticks to the colon walls.
Start taking Miralax daily. Have the next Doctor that the sees order a belly x-ray.
Bill
Call his CF Center and ask for an appointment ASAP. His fecal test only shows that he is digesting fats. He may have a bowel obstruction and/or bacterial overgrowth.
Bill
Liveinhope:
If both parents have ONLY one mutation (D508) then the answer to your question is yes. If, however, one, or both, parents have a second mutation, then the landscape changes. There are almost 2000 known mutations and unless you and your spouse have each has a FULL CYSTIC FIBROSIS...
100% PI simply means that I my pancreas does not produce any enzymes.
Your story is very common among us who were dx later in life. Much healthier after the dx.
Bill
Some Sales Managers talk about the FAB method of sales. Features, Advantages & Benefits. I might try Facts, Advantages & Benefits. You are having this problem (pain, discomfort, etc) Surgery will make the problem go away. Then you will feel great, like all of your friends.
Good luck,
Bill
cheerful:
No not at all. A little over two years ago when I changed my care to Boston Children's Hospital, they announced that they would be closing the clinic for several days. It seems that Mayo Clinic's handling of CF patients was considered superior to Boston Children's. The reason for...
He has many patients who require an airline to bring them to Boston. I have been reading your posts for awhile and I would, strongly, advise you to drive or take the train but visit him at least once.
Bill
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