My ds is 6 months old and not growing well. First of all I had severe polyhydraminos with the pg. After ds was born he appeared perfectly normal but a little small. He started at the 25th percentile, at 4 months dropped to the 5th, and now at 6m he is in the 3rd (weighing 13.5 lbs) He is just so tiny. I am breastfeeding on demand, about every 2hrs. He seems satisfied and is pottying regularly, so I am sure he is getting enough to eat. He doesnt really cough much but does have an occasional dry cough. And he has frequent large mucousy stools at almost every diaper change. I am not sure he has CF but something is seriously wrong, he should be growing! Please help
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Does this sound like CF?
- Thread starter anonymous
- Start date
Hello. My name is Stephen Ratajack, i am 16 and have CF. What you need to do is take ds to his primary pediatrician, and tell that Dr. that you suspect CF. The Dr. may run an exam, or schedule an appoitment with a CF doctor. They will run tests on him, and one popular test, called the sweat test. People with CF have very salty sweat. After the results come back, they will know if he has CF. Another thing, does ds go to the bathroom alot. Thats is also another sign. Most people with CF don't digest food very well. I was diagonosed with CF at 5 months old. The growth scale being low is also a sign. Mine was in the 15 percent range until 2 years ago, and now its up to 25. Anyway, this does sound like CF, and i advise you do the suggested information in my first few sentences. GET DS TO A DOCTOR!If you have any other questions email me at, Hellieger1@Hotmail.com.
Hi, I am the mom of a cf child who will be 4 this summer. She was 3 lbs14oz at birth and had a tough time gaining weight. She ate every 1 1/2 - 2 hrs and cried a lot. I tried breastfeeding but she didn't gain so we tried formula. I'm not sure it made a difference with her weight but she ate less frequently and I was able to get some much needed rest. I also had a difficult pregnancy and never recovered from that because she needed so much attention. I knew she had a lot of stools but only after she was admitted to the hospital with failure to thrive did I realize that it was as much as 15 times per day. I know how terribly helpless you must feel right now. Try and keep track of her stools and rate them small to large.Our pediatrician admitted her with failure to thrive at 6 weeks with the thought that it may be a milk allergy. She was tiny (5 lbs at 2 months old) and no respiratory symptoms. After 2 weeks we did the sweat test and it came back positive. It was the best thing that could have happened because we were finally able to help her. It was then that I realized she was crying because of stomach pain because she couldn't digest.I know it is tough when you know in your heart something is wrong but you don't know what. Insist with the dr. that he be tested. We saw several dr's and went to emergency twice but kept being sent back home. I wish I had insisted more.Sometimes we know best as parents. Write down everything you can about how much he eats, how often and about his diapers and bring it with you to the dr. If it isn't CF they may be able to use this information to find out if there is something wrong. I wish you the best of luck.
Hi there, My DS has CF and was diagnoised at 1 month. Please call your pediatrician tomm and insist that you be soon TODAY! Bring with you, your list of concerns and a diaper filled with stool so the Dr can see exactly what you mean. My pediatrician actually asks that we bring in a "fresh" diaper every time we go. I know it sounds gross but put it in a ziplock, trust me they will not be grossed out. Also when the CF screen can be drawn today, I know that Quest labatory does the extended CF screen. Quest is in the states but I do not know where you are. The only "Gold" standard test is the sweat test so inquire about that as well. I know how scared you are and just remember that you are never alone. I wish you the best.
Thank you all for your reply's. My ds has a dr appt on thur. morning. I am going to discuss it with her then. My ds does have very frequent stools. I will keep track today and see exactly how many. They are shiny, bright orange and watery/ mucousy. I dont think my other kids had stools like this. Most but not all of them seem large. Its like he has these explosions that usually leak out of his diaper onto his clothes. What is the sweat test? How is it performed? And yes I am I am in the states.Thanks again,Melissa
A sweat test is quick and painless. They will just give him an injection of something to bring up his body temperature. They wrap a coil around his arm to collect sweat. They asked us to keep our baby wrapped in blankets but she was small. They collect the sweat and test it. A high sweat content usually means CF. If your child is hot and sweaty you may be able to taste the salt when you kiss him.Let us know how things work out. This is a great place for support if the test is positive.
Melissa, The shiny, yellow stools you are speaking about indicate undigested fats (malabsorption) - a sign of cf. It can be described as if you poured a little cooking oil in the diaper. My daughter was diagnosed at five weeks of age. She did not gain any weight until she was started on enzymes at six weeks of age. I was secretly afraid she would die without a diagnosis, so cf ended up giving us the medications and treatments she needed. Don't let your pediatrician talk you out of a sweat test/genetic testing because cf does not run in your family. About 80% of the families diagnosed with cf did not have family history. Here are some websites to check-out.http://www3.nbnet.nb.ca/normap/CF.htmhttp://www.cff.org/living_with_cf/sweat_testing.cfmKeep us updated. Hope you get some answers soon. Sharon, mom to Sophia, 2 and Jack, 7 months both with cf
Thank you all for your reply's. I took ds to the ped. this am and she said she was very concerned about his weight. I didnt mention my suspitions( wish I would have). She thinks he has milk allergies and if he would just eat more solid foods then he would gain weight. OK! And she said the stools were not normal but that was probably from not eating enough solid foods too. She didnt even ask to see him for a weight check soon. I also noticed on another thread other moms also had high fluid levels.
Opp's got kicked off! Anyway I noticed other moms also had high amniotic fluid levels too. I had severe polyhydraminos when pg. Nobody checked to see if my son was ok. He appeared normal at birth so they assumed he was fine. I am just frustrated! There has to be a reason for him not growing well even if it isnt CF. Shouldnt my ped be more concerned?Sharon I couldnt pull up the websites you posted.
I saw that you were not able to go to those links. E-mail me at sdelorenzo@sbcglobal.net and I will try to give you the links by e-mail. Hopefully that will work.I read about your doctor's visit today. My nephew was not diagnosed until he was four (a few week's after my daughter's diagnosis). His parents accepted his problems and his doctors in my opinion did not do their jobs. I quickly learned that doctors do not always know what they are talking about. My nephew was seem by a pediatric GI doctor who has quite a few cf patients in his practice. He never thought about testing my nephew, even though looking back he had the symptoms. I have learned to inform my children's doctors what I think needs to be done, based on what I have learned from research and speaking to other parents. The doctors and I are partners who are there to help my children. By no means are they perfect. I can't believe she was serious about eating more solids, so he would gain more weight. Babies up to six month old only need breastmilk/formula to meet their needs. Your son is taking too much milk to begin with (eating every two hours). Eating frequently like that is a symptom of cf. Every two hours for a six month old (regardless of breast feeding) is too much. My daughter seemed content with her milk intake before she was diagnosed too. The doctor had me pump and see how many ounces she was taking. He told me that she was eating plenty (actually too much) and she should be gaining weight on that amount. My daughter also had a milk allergy to formula that was diagnosed with an endoscopy, a procedure where they take a little bit of the intestines and run tests. She had projectile vomiting for months and refused to eat. I have read a lot about milk allergies. I am not sure it is even possible for a baby to have a milk allergy when breastfeeding that is so severe that the baby has trouble gaining weight when they are eating regularly. It is very possible that your son does not have cf. Most of the children who get sweat tests do not have cf. But you need answers for your son. TELL your child's doctor that you want to schedule a sweat test. If they won't listen, go to another doctor and don't look back. You need a pediatrician who listens and addresses your concerns. It might also be beneficial for you to see a pediatric GI doctor. Sharon, mom to Sophia, 2 and Jack, 7 months both with cf
Well we went back to the ped. today. She said the coughing is probably just allergies. He has started coughing more frequently but has no cold symptoms. And doesnt cough anything up. I told her about my concerns about his weight gain (he gained 7 oz in the last 3w). She said breast feed babies sometimes starve themselves and he just needs to eat more solid food. She refused to test him for cf or anyother digestive problem despite his stools. She said that is from not eating enough solid foods also. I have never heard of breast feed babies starving themselves! I really think he has a problem with malabsorption. I put a little of his stool in the toilet and I could see oil seperate from the stool. For the amount of time I spend feeding him he shouldnt be this small. Did you all have a hard time getting dr's to listen to you? I am just so frustrated. I really appriciate all of your support and advice. ThanksMelissa
Melissa-I have three children - my oldest son has CF. He was not diagnosed until he was almost two. We were always concerned about his weight, his eating, and his stools - but his doctors always seemed to have a reasonable excuse. From my experience, almost every mom I know has had a hard time getting doctors to listen to them about their concerns. Especially moms of childre of CF. Most people still think of CF as a "lung" disease. I think a lot of doctors don't know enough about the disease to know that CF is a complicated disease - there are over 1,000 mutations of the gene. And even children with the exact same mutations present the illness in different ways. Some have lung symptoms, some have GI, some have both.I brought my son's stools into his doctor for every check up between one year and two years. I always questioned her about his weight and his growth. We also worried about his stomach which seemed distended and bloated. Our doctor completely disregarded all of our concerns. It wasn't until we took Sean into see her partner that we started to make progress. The partner asked us questions and looked at his stools. Within five minutes, she told us that Sean was not absorbing food properly. She went on to say that there are many, many reasons for this. But she wanted us to bring him into the hospital for a sweat test. To make a long story short, he was diagnosed with CF within a few hours of his first test and "offically" diagnosed after his second the next day.I hope and pray that your son does not have CF. However, it certainly seems to me that your son is not digesting food properly and that your doctor does not seem concerned. I would ask for a second opinion - perferably within the same group - that way they will have your sons medical history and you will not have to waste time. Make a list of how often he eats, and for how long (both breast feeding, as well as any cereals, etc. that he might be eating). Also include the number and quality of his BMs. CF stools are pale, foul in odor, greasy, frothy, and huge.Again there are lots of reasons for malabsorption, but I hope you can convince your doctors to find a reason why. Keep on searching until you have your answers. Remember that doctors are only human too - they also make mistakes and/or overlook things. Trust your instincts - a mother really does know best.Good luck and please keep us posted. I will be thinking of you and your son.--Katrina Young, mother of Sean (almost 6 w/cf), Carolyn ( 4 1/2 w/o cf), and Allison (2 1/2 w/o cf)
Hi Melissa - I would ask if your dr. has any cf patients in the practice. Many peds are only exposed to cf during their residency and as a result miss the opportunity to dx. early if the child doesn't fit the exact protocol. Most ped. say that as long as the stool is not black or blood streaked - no action. Well as CF parents, we all know this should not be the case. If they have frequent, bulky, foul smelling, loose stools - something may be up - allergy, malabsorption... From your description of the stool, the frequency of such, his weight situation and your request for a sweat test - this should be enough for the dr. to at least refer you for a sweat test or refer you to a GI dr. There should be no harm in ruling it out - peace of mind for you. If you have an HMO, just fight for the referral. The dr's comment regarding solid food is messed up; esp. if they suspect an allergy! It might be worth considering changing dr's if his treatment plan doesn't sit well with you. I believe a mother's intuition is often the right direction to go. Best wishes and please let us know what you find out.Jo AnnMom to 6yr. old w/cf and 9 yr. old cf carrier
To all of you parents with questions re: your babies health:I was talking w/ my mom today about this posting & she said that you should get a second, third, fourth opinion until someone tests your babies for CF. She said she put up with this kind of stuff for 16 months w/ my sister until finally someone did the sweat test. If CF is the diagnosis, the sooner you know, the better. I would be firm, I know it's hard & you feel unloyal, etc, but your child's health & your peace of mind is much more important than offending a Dr.Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
melissa, i was reading your story and your story sounds like my sisters and Her doctor felt her baby was fine as well until she had a cold she could not kick I called my pediatrician and got her an appointment and my neice was diagnosed 4 hours later @ johnhopkins A sweat test is very simple and easy to have done I would not wait Its better to be safe then sorry, I hope for the best GL... Tonya
Melissa, You need to stick up for your son. Drs don't know every thing. I just finished a college research paper on CF and the most common mistake is thinking that there is a milk allergy. The symptoms are the same. You need to demand a CF test. Don't stop until you get what you ask for. Early diagnoses is extremely important in the future health of your child. I am not trying to scare you but this is a matter of life and death. Your child's life is in your hands. My boyfriend is 33 and he has CF. He has a lot of digestion problems nad still has weight problems. You really need to be firm on your need for testing. No child should live with the pain your son is in. Good luck. Try to get an appointment with a CF care center. They are listed on WWW.CFF.ORG. Also you can look up a lot of information in the Merck Manual. They also have a lot of info online (WWW.MERCKMANUAL.COM) just search for CF. I hope this helps. If you need anything my e-mail is ASander6@tampabay.rr.com.
<img src="i/expressions/heart.gif" border="0">My heart goes out to you...because I've been there. My DS was born at a healthy weight, no cough, no symptoms...except his stool. They were "moussy", extremely large, extremely frequent, with NO smell at all, and occasionally greasy. He gained weight fine (not as much as my daughter, though). Everyone pretty much thought I was crazy when I brought up CF. (they will back me up on this!) Nurses always asked "Is it in your family?" no. "Then I wouldn't worry". I had his stool tested b/c it had mucus and blood in it. It came back negative for a milk allergy and I was told to "ignore the symptoms". Finally on Thanksgiving '03 he had been crying b/c he was hot...and I licked his forehead...and it was salty. The Monday after I DEMANDED a test...even though the doctor didn't think it was necessary. A couple of weeks later, to my family's, doctor's, nurses's, even the "sweat test" technician's surprise, he came back positive for CF. Shortly after, he contracted RSV and at the hospital we got our second test back...again, positive.I pray that your son doesn't have this (and he very well may not) but PLEASE...you have to demand the test. My son is doing very well now and is now in the 90th percentile for height, weight, and head. (When he was born...he was in the 10-25th percentile.) We will be here for you no matter what the outcome may be...but don't be afraid to demand tests, treatments, info, anything for your son. I was timid at first, but I went with my heart and now I'm glad that my son is getting what he needs and we now have a new "family" at the hospital and through other CF families. Please let me know how things go! I will be praying for you!!!!
Hi There,I totally agree with the last mother, you have to demand the test.My son also was like the last child, his stools were very frequent but they weren't bulky or oily.He gained but it was not really acceptable and was considered "mild failure to thrive".Fortunately in my country we screen all newborns for CF, so after a few visits from my concerned midwife we got a call to say he had tested positive for CF.But it goes to show that CF can be so different for everyone and some people have very mild symptms and other quite prominent.I belive that no Dr has the right to deny you to test for CF.It is just so important to get a early diagnosis and begin treatment asap.I also had large amounts of amniotic fluid.I wish you all the best of luck, and I hope that this can be resolved soon so both your son and you can have some answers.Rebekah LambertMother to Matthew 12mths w/cf
Hi,I have a son who was diagnosed with CF at 3 mo. of age and I agree with the other mothers. You have to be persistent with the pediatrician. My son was 5lbs 6 oz at bith and he just kept loosing weight. Every week 1-2 times I would bring him in for a weight check and he just kept loosing weight till he finally droped down to 4lbs 15oz at 3 mo old. It took me 3 MONTHS to get this doctor to listen to me. He just kept asking me are u feeding him? I was very angry and said my child is eating 40 ounces a day and not gaining a thing. The doctor finally admitted him in to a hospital overnight for observation and did some tests. His nutriton level was dangerously low and every time i fed my child it came out within 1 hour. I told the nurse to tell the doctor that his formula was going straight through him and to notify him of his nutriotion level. She did and when she came back she said doctor says he can go home and come back in a week for a weight check. I was FURIOUS. Why would he send him home when he is not gaining weight. I took him to a different hospital later that evening and they sent directly to Cardinal Glennon where they diagnosed him within 1 day.The CF doctor there asked me what made me bring him there. And I told him my story and at the end he replied if you would have waited one more week he would have died from malnutrition. My son is now 2 wil be 3 in July but is doing fantastic. He is still small as far as weight goes but is doing great thanks to the wonderful doctors and nurses at Cardinal Glennon.