CF Symptoms in Infants

[cottonvine]

hi. ill start this from the beginning. we are seeking CF testing for my 3 week old DD. she didnt pass meconium in the first 24 almost 48 hours after being born (even then she had to be stimulated). she had tests done and she didnt have meconium ileus... we dont know whether she had a meconium plug or not..

fast forward to now and she still rarely ever poops on her own. she almost always has to be stimulated. she is not constipated in the sense of too hard poop she just doesnt seem to be able to push stool out on her own very well.. we thought maybe she had hirschsprungs disease but that test came back negative...

so my question is what are the symptoms for CF infants as far as the digestive and pooping end of the disease... we are waiting to hear back about an appointment to get her tested for CF.

any comments greatly appreciated.

 

[anonymous]

My son was dx. with cf when he was only a week old. Fortunately, we reside in a state that screens for CF with the newborn screening tests they do. Our son never had to deal with not passing his meconioum, thankfully. Some of his symptoms were several bulky loose stools a day (5 - 7), which were very greasy in appearance. He also had somewhat of a salty taste when you would kiss him. Good luck with your daughter.

Jodi, mom to tucker w/cf

 

[anonymous]

SE ARE WAITING ON TEST FROM THE DR TO DETERMINE IF OUR GRANDSON HAS CF AS well.Sorry for caps at first just don't feel like retyping.he is 6 weeks old and was in the hospital about a week ago.dehydrated and now he is still loosing weight and can't take milk formula.he had an upper gi bec they thought he had a blockage at first.i don't know about the meconuim.If it wasn't passed what then (if you know) i am with you waiting.we must hang in there right!!!

 

[EmilysMom]

The obvious ones are loose bulky foul smelling stools and the salty tasting kiss. A HUGE appetite with little weight gain, failure to thrive is what they used to call it. Every CF child is different but definitely have testing done for piece of mind but be sure to have someone do the tesing who knows what they are doing. You can always get a false negative if an idiot is reading the results. A CF center is the best place to have testing done always! Hang in there!

 

[anonymous]

My son wasn't diagnosed until 3 years old. Looking back, there were some clues to CF. I don't know how much this will help since your baby is so small. I do remember from infancy, my son seemed rather colicky at times. I am sure now that it was his stomach aching from not being able to digest his formula properly. I would give him Mylicon (infant gas drops) pretty regularly (and definitely every night before I put him to bed). I could hear the gas bubbles in his belly. At several months old he had a very bloated belly (flat in the morning, but bloated once he ate). Also, his digestive issues became more apparent when he was much older than your baby - like almost a year old, when he started solids. That's when he had those foul, bulky BMs. When I say bulky, I mean they were running out of his diaper 3-4 times a day.
Your baby is so small it may be difficult to recognize CF symtoms right now (IF it were to be CF). However, she did have one obvious symptom which SHOULD prompt the doctors to test for CF - the fact that she didn't pass meconium in the first 24 hours of life. I don't necessarily think your daughter has CF, but the doctors need to rule it out for the previous mentions fact alone. It is possible they are waiting because the 2 main tests for CF probably won't work for your daughter right now. There is the DNA test which requires an amount of blood that they probably can't draw from her right now. The sweat test is the most accurate test, but your daughter has to be about 4 months old (I think) to be able to produce enough sweat for the test to be accurate.
Keep an eye on your baby to make sure she doesn't develop a fever. Babies that young should not have fevers over 100.5F (rectal). Also, if she seems to have labored or extremely rapid breathing. In either of these cases, contact your doctor right away. My son developed pnemonia at 2 days old (as a result of ingesting his meconium during delivery - we didn't think it odd at all).
Make sure your doctors do a CF test as soon as possible. I hope it is not CF and that you discover the issue relatively quickly.

By the way - my son NEVER had any problems POOPING <img src="i/expressions/face-icon-small-smile.gif" border="0"> He never needed to be stimulated.

 

[cottonvine]

thank you so much to those of you that replied <img src="i/expressions/face-icon-small-smile.gif" border="0">
i had a message on my answering machine today that she is scheduled for a sweat test in mid january. she will be 2 months old at that time. other than the not passing meconnium she doesnt have any other symptoms (that im aware of). she is thriving. she regained her birth weight before she was even 2 weeks old. so thats a positive sign. she is still gaining though she hasnt gotten any longer. not surprised on that though since shes destined to be short like her parents.
as far as the pooping issue... she is taking in 1oz of baby prune juice a day and she still will not poop on her own! i just dont get it. she tries and tries and NOTHING! she poops on her own about once every 5 days. the rest of the time she has to be stimulated. the prune juice is really doin the works on her poop so i dont understand why she isnt passing it. they tested her for hirschsprungs disease (came back negative) and did all sorts of xrays.. there isnt a blockage so we are still stumped. she goes into the gastro doctor at the end of this month. im hoping with all i have that she just has some sort of pooping issue that will work itself out. i admire everyone here that has to go through CF whether it be themselves or their children. i dont know how yall do it. i am so scared of the unknown. i wanted her to get the CF test as soon as possible and now im dreading it. there are some very strong people on this board. (((hugs))).

 

[anonymous]

I don't want to hand out false hope, but I really think your baby DOES NOT have CF. Your gastro doctor will probably be able to help you out. But it is very good that they are doing the sweat test - that way you can move on to finding the real problem. Good luck - keep us posted!

 

[anonymous]

It will be good to rule out CF if that's not what the diagnosis is. Usually, though, with CF you have the opposite problem--a lot of loose, greasy stools & not being able to keep things down or gain weight. Keep us posted<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi,when my grandson was born they the doctors found that his stomach was starting to extend and did some ultra sounds on him but they did not see why his stomach was extending so they sent him to Luthern General hopital in Chicago.There they did some more tests on him and found that he did indeed have some blockage,then they spoke to all the family members well meaning the grandparents and parents asking us about the possibility of cf.well I knew my sister was diagnoised at about 35yrs,boy by this time I felt it was all my fault that my grandson was born with this terrible diease,until the gene doctor said that it took two carriers to have the child come out with the diease.Anyway he went into surgery right away to fix his intestines,which were a big mess.He had ruptured 40% of his intestines because of the meconuim his duodenum and jejunum were a mess.The doctors told us by finding this mess with his intestines that it was a deffinte yes to the cf.It is a lot of work but one I can say for sure I would not change him for anything in this world,because he is the sweets 3 year old in this world we do have our ups and downs with him but thats ok we have learned to deal with it.But you will notice lots of bm's very foul smelling and greasy.At times it can be very runny,especialy when he won't take his enzymes what goes in comes right back out in a matter minutes or he will get real bloated and sever pain in his tummy.We have finally convinced him if you don't take your med you will get a tummy ache and you don't want that do you? so he'll take them.But rest a sure if he test positive you have came to the right place for help,understanding,compassion.Good luck .