Granddaughter diagnosed with CF - Cystic Fibrosis Message Board

jazzinnan · 07-05-2005, 10:59 AM

My granddaughter was born on April 17th and diagnosed with CF. One question I have which has not been answered yet is does the disease always go to the lungs?

Jazzinnan

Ratatosk · 07-06-2005, 08:45 AM

Unfortunately CF is a progressive disease. Eventually it will affect the lungs. Some people in the beginning have more problems with digestion, sinuses, etc. The key is keeping the lungs healthy and keeping infections away. DS's doctor explained to us that these children are born with healthy lungs, but over time with infections and that thick nasty mucus, scaring occurs, the scilia in the lungs doesn't work as well or gets damaged. This is why it's so important to do Chest Physiotherapy (CPT) at the get go even if there aren't any symptoms.

We do CPT three times a day with a nebulizer to keep things moving. More if DS doesn't feel well.

jazzinnan · 07-07-2005, 11:27 AM

My daughter and her husband still do not believe that she has CF. They also have a 3 year old son who they know they should test but just can't go there yet. They're still convinced that she was miss-diagnosed since we've seen no sign of this diesase in the family. I guess it all still too new to all of us yet.

cfmommy · 07-07-2005, 02:29 PM

DS is two years old and was diagnosed at birth because of meconium illeus causing a bowel obstruction. Was like a kick in the gut. No family history. All we knew about CF is what we saw on tv on those horrible movie of the week or medical drama. I cried for months!

I kept hoping the doctors were wrong too and ds did pass a sweat test with flying colors; however, two genetic blood tests say otherwise. Most people aren't as "fortunate" as we were to find out immediately that our child has cf -- usually it's after several bouts with pneumonia, upper respiratory problems, etc that parents find out and sometimes by then it's too late -- lung damage occurs.

Our doctor also told us that the lungs aren't usually affected right away. In any event there's a whole grieving process that your family is going to have to go through -- anger, denial...

dannysmom · 07-07-2005, 09:30 PM

Our 3rd child was diagnosed with CF at birth last June. We have 2 other kids and eveyone recommended that we get them tested. At that time we could not even consider doing it. There was no way we could handle another diagnosis at that time. After about 6 months we decided to get them tested, bad news is they did a cheek swab and dind't get enough cells for a result. Next we went for a blood test, they put it in the wrong tubes and sent it to the wrong lab, so no result from that either. We are military and recently moved to a new duty station so we have not been able to get them tested again. We will eventually, but just let your daughter and son-in-law have a little bit of time for things to settle. Best of luck to you and your family!