Hi! I have a ds that is 2 and diagnosed with cf at birth. My brothers little girl (my niece) just turned 4. So this is the problem: The first year of her life she was on albuterol treatments...I dont really know why because they didn't tell us why. Then for a couple of years if she got really sick then she would have to use her albuterol inhaler. As a baby she was always small and petite but never sickly looking. Now she seems tall to me and has picked up her weight some. Well now this winter she has had sinus troubles alot. She is actually now immune to an antibiotic (can't remember which one). The doctor told them that her sinuses are just so full. So now they are taking her adnoids and tonsils out next week. She does cough alot but it does't sound junky. So my questions is do you think she needs to be tested for cf? What about her weight doing better now....isn't that a good sign that she probably does not have cf? So what do you all think?
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What Do You Think????
- Thread starter anonymous
- Start date
Given that your child has CF I think your niece should be tested. Weight issues arent always apparent in CFers or right away. My real weight struggles didnt start until later in life. I was just recently looking at pics from high school & I look so "plump" tho I didnt weigh that much more than now, but evidently enough. Anyway given your nieces problems are her lifetime it most certainly couldnt hurt to have her tested. If in doubt, rule it out is what my doctors always say. Especially with a family history of it!
She should definitly get tested. Knowing is always better than not knowing. My niece is 12 and I suspect she has it (constant respiratory problems, underweight, stinky poop as an infant, etc...) Her mom refuses to get her tested, I've brought it up several times and she just blows me off. I have a new niece, 4 months old, and I hope she gets tested. She doesn't have symptoms, but for peace of mind I would do it anyway.
Yes, I think it is very reasonable that you talk to your brother about testing his child for CF -- sure seems like some red flag symptoms to me! The weight gain issue should not stop you from pursuing testing. People with CF can have far fewer symptoms than she is presenting -- I think she really should be tested especially with some of the lung issues going on -- seems like they should also be aware of possible CF during surgeries (anesthesia)
Yes, I too think your niece should be tested but be prepared for lots of family tension. I have been after my brother for 7 years to have his daughter tested. She exhibits many symptoms but he and his wife prefer to keep their heads buried in the sand. There is also a family history on his wife's side but they can't handle even the thought of their daughter having CF. They no longer talk to me because I recently took a firm stand and insisted she be tested, implying they were not doing what was best for their daughter. I only took that step because my suggestions were being ignored for far too long and someone had to speak up on behalf of this innocent child. At least now every time they hear her cough my words are probably ringing in their ears and I hope that they eventually, before too much damage is done have her tested and treated properly. I would bet my life that she has cf, that's how sure I am.
It is just so sad that so many people think that a medical issue such as this should be hidden or if it's not spoken about it won't exist. I understand that everyone has the right to privacy and to a point ignorance, but when does that ignorance become negligence. I'll tell you when...when your child has CF and you believe that their child who happens to spend time with yours might also have it. The possibility of cross contamination is just too big to be ignored. You most definately should ask if they would consider testing and make it clear that if she does have CF then your child could also be comprimising their childs health.
I also understand families can be complex and difficult at the best of times so tread as lightly as you feel necessary but it sounds like you have already tried. Any chance you have licked her lately to see if she tastes salty? <img src="i/expressions/face-icon-small-smile.gif" border="0">
I also understand families can be complex and difficult at the best of times so tread as lightly as you feel necessary but it sounds like you have already tried. Any chance you have licked her lately to see if she tastes salty? <img src="i/expressions/face-icon-small-smile.gif" border="0">
I can say that I do understand where they are coming from. (Though I don't agree!) When I was pregnant, we found out that we are both carriers for CF. We decided against amnio since I had a miscarried before, and decided to find out when he was born. Well, I put it off for a couple months because he seemed fine and I just wanted to have a "normal" baby. By the two month mark he really started to decline on the growth charts and my ped. recommended the sweat test. It was positive and it was a very sad day for us. But the point of this is, the unknown was so much worse than the known. Our first clinic visit was so positive and our son has been doing fantastic since then. I feel sick to my stomach that he ever went through those first two months without enzymes. He is happy, and healthy right now, and his CF doctors are so encouraging and positive about the future. Our friends and family have been great too. They don't treat our son any differently, and for that I am grateful. So while I can understand where they are coming from, it really is so much better just knowing. Then you can move on, and see that CF is just a part of who your child is, not their entire being by any means. And believe me, I am the last person I would have ever thought could be positive about this.
Carrie
Carrie
When we found out ds had CF, we were in shock. Going thru all the stages of grief -- anger, denial, yadda yadda yadda. It was hard to explain something to people that we ourselves didn't quite understand either -- there were so many unknowns -- was he going to live, be healthy, lead a normal life, what changes would we be making in our lives and I KNEW the minute we started telling people, they'd be asking the same questions that would be running thru our minds. Add to that the looks of pity from other and me not being able to explain without bursting into tears, making others feel horrible. Liza
My nephew was diagnosed with cf at age four a few weeks after my infant daughter's diagnosis. He had been on occassional breathing treatments and had on/off constipation problems. He had never had any serious problems that led to cf testing until my daughter's diagnosis. Four of my other neices/nephews were ested from different siblings to make sure. It doesn't hurt to test.