Baby may have CF-question about possibility

anonymous

New member
We have 4-month old twins, a boy and a girl. They are our only children. Our little girl has had breathing difficulty which was initially diagnosed as stridor. She makes a wheezing sound when she breathes and her chest heaves up and down. Not always, but very often. She has had x-rays and a "swallow study" done to see if there were any cysts in her esophagus, and they came out normal. Stridor is supposed to be relatively harmless and go away on its own in a few months.

She also has had difficulty keeping formula down and was throwing up a lot. The stuff that came out was kind of a think, mucusy version of the formula. Not really what I'd call vomit, but a large volume - far more than normal spit-up. She has been taking Reglan and the vomiting has stopped.

She has also something called "wryneck" where she can't hold her head up very well. She's getting physical therapy for that.

Also, compared to her brother, she is small. They're about the same height/length, but he is nearly 14 lbs and she is less than 12 lbs. I know there is a difference between boys and girls in size and strength, but she seems frail compared to her brother. He is strong and flabby, and she is lean and fragile. She drinks less formula than her brother, but has about 24 oz per day, which is normal for her size.

She is out of sorts often, which we assume is because she doesn't feel well much of the time. She does sleep through the night and has several moments during the day when she is smiling and laughing and happy. But compared to her brother she is definitely the cranky one.

We recently took her to another pulmonary specialist, who said it seems like she has stridor, but he wants to have her tested for CF. Well, as we read through the symptoms, we get nervous because many of them do describe her. We can't get in for the sweat test until Wednesday, and are really anxious to have to wait so long. The more we read about CF, the more scared we get.

Now my question is, as I understand this, if our daughter has CF, wouldn't that mean our son has to have it, too? If two people who are CF carriers have children, wouldn't all of their children have CF? Even though I obviously don't want either of our babies to have any disease, I'm sort of hoping this is true because since our son doesn't really have any of the symptoms, that would seemingly make it less likely that our daughter has CF even though she does have some symptoms. I've tried to read as much as I can, but the info I've found doesn't address this.

Can anyone help me with this?

By the way, neither my wife nor myself know of anyone in our families who has had CF, though I understand that we could each still be carrying the gene.

I also want to say that I feel for anyone who has CF or has a loved one who does. There are so many terrible diseases that it's easy to hold them in the abstract and not really think about them when they don't affect your life, but when you find that your little baby may have such a disease, it really hits you hard and brings that reality crashing down around you.
 
S

SeasonsOfLove

Guest
Hi,

I just wanted to tell you that about a year after my daughter was diagnosed with CF, a childhood friend of mine and his wife were told to have their son tested for CF. However, their child did NOT have CF, just severe asthma.
So you have some reason to be hopeful until you get the test results.

Best of luck, Kathy
 

anonymous

New member
Hi there. I have a 2 year old with CF. Neither my husband or I have any family members that have CF. Yes, it is possible for one of your twins to have CF and not the other bc they are fraternal and not identical. When 2 CF Carriers have children, there is a 1 in 4 chance that each child will have CF. Obviously, identical twins share the same genetics which would mean either they both have it or they both don't...but this is not the case with fraternal twins bc they have different genetics so there would be a 1 in 4 chance for them both (if you both ARE carriers). I hope you can get the results soon after the test, I am sure you are very anxious. Please post back to us to let us know what you find out.

Big Hugs!
 

anonymous

New member
Some of what you shared sounds consistant w/ CF and some does not.
Alot of CF babies eat ALL THE TIME and never seem to get full. Their smelly stools aren't always "formed" for a lack of a better word and the baby's skin can "taste" salty.
Does any of this sound like symptoms that your baby has?
And what someone else said is true....one of your twins could have CF while the other does not.
We hope & pray for the best for you. Please keep us posted.
 

anonymous

New member
Thanks for your responses and the info.

I wouldn't say our daughter eats all the time and never gets full. She has less of an appetite than her brother. She just isn't developing like he has. She feeds much slower than he does. I think she has trouble sucking on the bottle because of her breathing difficulty.

I've read that about the stools, and both of the babies have large, loose smelly stools (to me, anyway). I can't tell much difference. (They certainly aren't small, well-formed and good smelling!)

My wife thinks our daughter's skin tastes saltier than our son's, but I'm not sure.

She does have the thin, flabby muscles, coughing, gagging, wheezing, upset stomach, etc.

We appreciate your concern.
 
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2sickkids

Guest
I know a lot of parents freak when they hear it may be cf. Try not to stress if your girl has it finding out sooner then later can helps in the long run. I had no family history yet I have a 2 year old and 9 month old with cf. Aslo my little cousin just found out his 3yr old had it and a cousin on the other side of my family is trying to get her doctor to test her kid. Her doctor's say no way cause her child is not (white). I am 23 and now all the doctors want me tested. Not all you kids will have it if you and your wife are carriers. If your girl does have it remember they are learning more about it every single day.
 
C

CFlat

Guest
Our son had similar symptoms as your daugther. We got him tested as a percaution because our little girl got dx w/cf just weeks after he was born. He would weeze, have abnormal breathing at night as well as spit out a full feeding. He tested out fine, and is just a carrier. But they did put him on Prevecid for Acid Reflux. He is doing much better, but he never failed to thrive like his sister.
Signs to check for.....
Check to see if their "poop" floats in the toilet. If so they are not absorbing enough nutrients (fatty stools). Common sign of cf.

Hope this helps
Chuck father to Avery 22-months w/cf and Rhett 4-month carrier
 

anonymous

New member
Hi, it's the thread starter here. We found out yesterday that our little girl does not have CF! We are obviously very happy and very relieved. Her problem is apparently just stridor, which is supposed to go away on it's own, and we are hopeful that it will.

Thanks to all of you for your advice and warm wishes. Our thoughts and prayers will be with you as well. This experience was certainly an eye-opener for us.
 

anonymous

New member
Congratulations!! I am glad you won't be with us (you know what I mean!) and am also glad that you were able to gain a little CF awareness too- please don't forget about all of us with CF in their lives!!!

Hope her stridor goes away quickly!!
Kelli
 
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