Hi, I was hoping you could answer a couple of questois for me about CF symptoms.1. I was interested to read about hands and feet "pruning" quickly when in water. I was just wondering how fast "quickly" is. Is it almost immediate? Does it take 2 or 3 minutes? Is it more like 10 minutes or more?2. I was also wondering if the skin tastes salty over the entire body, or just in one area. Also, does it pretty much always taste salty, or is is just when there has been sweating (physical activity, hot day...)I'm a paranoid new mama who read about salty skin and CF, so I licked my baby's head. She tasted salty. She only tastes very salty after crying a lot, or on hot days, and the rest of her body has only tasted salty on the one or two hot days we've had. My poor baby is being licked to death :lol:Thanks for your help!
A couple of questions
- Thread starter curious
- Start date
Hi, My daughter prunes up within the first few min. of being in the water. Sometimes she is salty other times she is not. Is there a reason that you think your baby might have CF? Is it in the family that you know of? Does she have any other symptoms? Ceck out our site http://groups.msn.com/teamRachelJane and see other symptoms and get more info about CF. I hope it's not CF but if it is, there is a lot of help out there and on the net Check out the links on my site.Andrea
I don't know why I'm so hung up on the possibility of CF. I just read the thing about salty skin, and when her head tasted salty, I panicked. Since I started reading about it, I've not been at all reassured. ~ She is almost 5 months old.~ We have no family history of CF on either side.~ She is gaining weight well. When I mentioned my concerns to our GP, he said this was a main indicator. She is a beautiful, pudgy little girl.~ I checked her "pruning" in the bath, and she was pruned up at about 10 min. Is this quickly??~ Her head is salty, but the rest of her really isn't. I also taste salty on my upper lip and chin, so I don't know how concerned to be about her tasting salty.~ She has just started sounding a bit wheezy in the past week, but there is asthma in the family. A diagnosis of asthma still wouldn't put my mind at ease, since it often accompanies CF from what I've read.~ Usually about once a day, she spits up some thick mucous. Maybe about one or two teaspoons worth. It's clear but mixed with breast milk, and she doesn't cough it up, she spits it up. This is the main thing that keeps bothering me.
From what you listed, I think your daughter sounds very healthy. I will address your questions to the best of my ability (ie. my own experience): pruning - My son usually prunes almost immediately, usually within a few minutes. In fact his fingers and toes get so "pruned" that they appear almost white at the tips. I have two daughters who do not have CF, they will eventually prune up, but it takes them a lot longer and the pruning is not as dramatic.weight gain - the fact that your daughter is gaining weight is a very good sign. For most people with CF (I think around 90%), the thick mucous that causes so much lung infection also blocks the duct leading from the pancreas to the stomach, thereby depriving them of natual enzymes that break down fat and protien. Without these enzymes, their bodies are unable to break down and absorb any nutrition at all. This is why so many babies with CF are diagnosed as "failure to thrive." Your GP is partially right in that GI problems are an indicator of CF; however it is merely just one of the many indicators of CF. It is worth noting that there are some people with CF who have full or partial pancreatic function. I think it is all dependent on which CF mutations they carry in their genes. My son was diagnosed based soley on GI problems; however, there are many other children who are diagnosed with little or no GI problems.wheezing - keep in mind that babies often make funny sounds. We actualy nicknamed my oldest daugher (who doesn't have CF) "Taz" for the first few months of her life because she was so noisy and squeaky, she actually sounded like that Warner Brothers cartoon character "the tazmanian devil." If she really is wheezing and having trouble breathing, it could be asthma and you definitely should talk to your pediatrican about it. She also could be developing her first cold.clear mucous - I think that your daughter spitting up clear mucous is fairly normal - at least my two daughers (who are perfectly healthy) did a lot of spitting up and it looked the same as you describe your daughter's spit up. I think I would worry more if she was in fact coughing up mucous.salty skin - I don't know what to tell you about the salty skin. Personally, I notice that my son tastes salty from time to time, but not always. Some parents have diagnosed their children purely by "salty kisses;" however, I think all of us taste salty from time to time. I definitely would discuss this with your doctor. If you have good medical insurance, I definitely would push for a sweat test. If nothing else, it will ease your mind and erase any fears that you might have. I want to emphasize that I am not saying this because I think your daughter might have CF; I am saying this because I wish that I had pushed more and been more aggressive with my doctors when we were trying to figure out what was going on with our son. I think that you have every right to be reassured that your daughter is healthy. Also, I don't think that you are a "paranoid new mama," you just are concerned and want to make sure everything is just fine. I still remember those first few months of motherhood - it is a huge and daunting job. I know I wanted to make sure that I was doing everything right and that I was taking the best care of my son. You are not the first mom to think that she is "paranoid."Take care and good luck,Katrina - mother of Sean (5) w/cf, Carolyn (3.5) w/o cf, and Allison (1.5) w/o cf)I hope that are your fears are soon put to rest and I hope your daughter is healthy. Enjoy this special time in her life. They grow up so quickly 
Hi, It does sound like your little one is healthy, but mine didn't really start getting sick until she was about 6 months. Rachel thrived until she was 6 months old and she got a cold that we couldn't get rid of. Then she started loosing weight and having diarrhea all the time (malabsorbtion) So it's hard to really tell. Rachel did spit up way more than average because she had terrible Reflux-this is pretty common with CF.We had no idea that there was any CF in our family.The pruning for Rachel happens much more quickly-like 3 min or so.Rachel is salty all over when she is salty.If you really think that it's CF demand a sweat test just to be sure. Some people with CF do not have as many digestive problems as others. Some do fine with digestion and don't have weight issues. Others have fewer lung issues. Babies should spit up occasionally but if it happens a whole lot ask the doc about reflux.good luck to youAndrea
serendipity730
New member
Personally, it has always been my hands/fingers that have always tasted saltiest. But, if you are very concerned, speak to your doctor and maybe you could have your baby tested for CF. It couldn't hurt, and it would ease your mind! Good Luck!Mary 21 w/CFP.S. My family didn't have any history either, so that doesn't always mean you are safe.
W
woosky
Guest
hi,about the salt taste on the skin of my baby, it is very strong on all his body, and when he cries, after dry the tears, u can see a "salt mark". We don't have no relative w/ cf. to say the truth, i don't think we have so many cases of cf in my country, i have never heard about, but anyway i have the gens.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi!The pruning (like the others indicated) happens very quickly. I think I timed my daughter once first showing signs of pruning in 90 seconds. In 3-5 minutes she is full fledged "prune hands" after 10 minutes (when her sister first starts showing signs) her fingers and feet look horrible. I think it begins to bother her at this point. AS a side bar... We are going to the beach where salt water is present. I wonder if she will prune up when exposed to salt water. (No, I dont plan to put a few boxes of salt in her bath to see if that works!)Best wishes! I too hope it is not CFDon P
Curious,Your Baby Girl sound healty but you can never be too sure. I would have her check out.My story is My mom asked my Dr when I was a baby about the salty skin and the dr replied she didn't hat to worry about it I was to fat. (I was not fat but I was a healthy pudgy baby). About 9 months of age I started having chronic pneumonia. A sweat test was then done and I was diagnosed with CF. The up side is i was a breast fead baby. My family feels that this is why I was so "healthy" weight wise. Up until I was 24, I was on the uper end of average on height and weight. Since I have went down some but that is my own fault for neglecting my care for work.Also, There is diffrent mutations of CF that causes it to affect everyone diffrently. Some may have only digestive problem, some may have only lung problems, some may appear to have only a very mild case.I would suggest you have your DR to test your daugther. 1) to aleive your fears if she does not have it 2) to start laying a good foundation for care if she does. That way treatments will be a way of life for her as she grow up and she will be less likely to think as much of it. As opposed to a sudden change of what she is used to....