Does this sound like CF?

AbsintheSorrow

New member
This last post is a very good example. I never had this problem, because I was diagnosed pretty early. But, I do know how to fight with doctors for things. If you think you need something done, or tested, demand it. If your doctor won't do it, go see another. And another. And another, until, something is done. It's very important. Doctors think they know everything, and after 20 years of dealing with many... let me tell you, they don't. Who knows your child better than you??
 

carrieinbc

New member
hi, what are the actual symptoms of cf in a baby....do you know?My son is 1, constatly has yellow, very hard poop, foul smelling. He does not eat anything but a milk bottle but will take many in a day.He prolapsed the bowel at 5 months, has a constant nasal infection and is anemic.<img src="i/expressions/face-icon-small-frown.gif" border="0">
 

carrieinbc

New member
Hi Katrina Young, I was reading your posting to Melissa and I thought maybe you might have some information for me. What did your sons poop look like? My son is 1 but he does not have the loose stool everyone talks about, infact he is very constipated with horribly hard pasty yellow poops that smell so bad. The doctor thought CF and then did the sweat test and ruled it out as in the "grey area" I have been fighting and fighting but our medical system is so bad that I can't seem to get any where. We have considered going right to Vancouver Childrens hospital threw emergency but who knows what would happen. He screams and screams when he goes poop and it is terrifying! It smells so bad and blood tests show he has no protein and is anemic. I don't know if you have read my posting but he also prolapsed his bowel at 5 months, has chronic nasal infections and a distended belly. My great uncle had a daughter with cf that passed at the age of 17 in 1969. Apparently the cf was on his wifes side so doctors say it is not a hereditary factor?carrieinbc<img src="i/expressions/face-icon-small-confused.gif" border="0">
 

EmilysMom

New member
The last line of Emily's post is my battle cry...........Who knows your child better than you?If you think or know something is not right, push your doctors to test or search further for an answer. They don't always know what they are looking at and they need to look further. They sometimes have to be "pushed" a little harder for the right answer. Because CF is an orphan disease, it is not always the first one to come to mind and they don't always think of it right away as a possibility, so they need to be reminded it's out there and could be the answer. Good luck!
 

anonymous

New member
hey carrieinbcjust to let you know, you need to inherit 2 copies of the CF gene to actually have the disease. and you must get one copy from EACH of your parents. therefore if your great uncle and his wife had the child together (which is what i am assuming!) and she had CF, he must also be a carrier, therefore the gene runs in his family. this doesnt mean everyone in his family will carry the gene, it just means there is a chance. hope that helps a bit <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Can you help me, too? Like the mom who started this, my name is Melissa. My newest son will be 5 wks tomorrow. He weighed 7 lbs 8 ozs at birth, was down to 7 lbs 2 ozs when we left hosp, and gained NO weight for first 2 weeks. In hosp, they switched him to soy formula after 24 hrs because he was spitting up so much. (I can't breastfeed due to brst reduction surgery yrs ago.) He seemed to do better, but always acted like bowel movements were painful. Two weeks ago I called pediatrician b/c he'd started screaming w/ bowel movements, had some projectile vomiting and I noticed his belly button had suddenly become an "outie." Ped said he appeared to be pushing so hard he had herniated his navel and appeared to have slightly prolapsed rectum. She immediately referred us to pediatric gastroenterologist who took samples of tissue by doing a rectal scope. She was the one who mentioned CF, but said his stools were not consistent with CF. She said he has milk protein allergy and switched us to hypoallergenic formula. After a few days, I noticed he was spitting up more than ever. She now has him on Prilosec. Luckily, at his 1-month checkup last wk, he had finally hit 8 lbs. He has gone from having b.m. with about every other fdg to only about once a day now, but is screaming again as if in horrible pain and throwing up and spitting up more than ever. Coincidentally (?), for last week he has been congested and I have been suctioning LOTS of mucus from his nose. When he threw up today, I noticed large pieces of mucus amid the formula. His stools have never been greasy, and he did pass meconium w/in 24 hours of borth. What do you think? Is this just milk protein allergy and some reflux, or should I request CF testing? Both my other boys (ages 5 and 1) weighed over 8 lbs at birth and 10 lbs by the time they were 2 wks old. Having such a small boy who is obviously uncomfortable and not well is foreign and frightening territory to me. Any feedback would be welcome. Thank you.
 

anonymous

New member
My daughter has both cf and a milk protein allergy. She was diagnosed with cf at five-weeks of age. She had not gained weight up until that point when she was tested. She continued to projectile vomit until she was tested for a milk allergy at seven-months old. She stopped throwing up when we switched her to Nutramigen.It did take about 3 weeks for the vomiting to stop and the intestines to heal. What formula is your son taking? It is hard to know what is going on with your son. It definitely would not hurt to test your son for cf. He does have a few symptoms (rectal prolapse, slow weight gain, etc) as you mentioned. Most children who who show some symptoms and are tested for cf do not have the disease. It would put your mind to rest to know that you don't need to worry that he might have the disease. It also sounds like you have a good pediatrician who was willing to send you to a pediatric GI doctor.Sharon, mom to Sophia, almost three and Jack, 9 months both with cf
 

Drea

New member
Hi I wanted to reply to a few things here. Carrieinbc,It is not all that uncommon for kids with CF to be very constipated with really hard stools. Also the rectal prolapse is common in kids with undiagnosed CF. Chronic nasal infections are extremely common in CF kids. Has he been checked for nasal polyps? they are also common with CF kids. I do not understand how CF was ruled out if the tests results were in the "grey area" ????????? If that means that his numbers were between 40 and 60, I would insist on a genetic test. there is a good possibility that it could be CF with the prolapse, nasal infections and "indeterminate numbers" Mellissa My daughter was diagnosed at 9 months.My daughter spit up alot too at first. She also had 2 very hard stools in the hospital just after birth, after having passed the meconium. We were told she had an "immature digestive system" and she was put on pregestamil. (ironicly that is what the put CF babies on pretty routinely) When we tried to switch her to a milk based formula, she spit up even more, so we went to a soy based one. it was a bit less witht the soy. She ate a lot but she also spit up a lot still. She had some constipation during this time too. She gained weight pretty well until she was 6 months or so. That was when she also got her first cold. She coughed a lot and she started having the "classic" CF stools. We went back and forth to the docs a few times a week and Rachel seemed to be almost over the cold and then it would come back. finally she was diagnosed as having pneumonia. They also thought that she had allergies. Anyway, the doc put the weight loss, the pneumonia, the digestive problems and the throwing up all together and sent us for a sweat test. Rachel's numbers were very high, and there was no question that she had CF. her throwing up was actually reflux- also very common in kids with CF.I just wanted to point out that some kids have a few bumps in their weight gain and digestion, then seem to start to grow and adjust before they start to loose weight again. I really hope that neither of these babies has CF, because it is a hard thing to deal with, but if they do i hope that they are diagnosed early, since the earlier they are diagnosed the earlier they can get feeling better.Andrea
 

carrieinbc

New member
hi, i read about this protein allergy. Is is possible that a protein allergy could be what is happening to my son corbin? He has chronic Yellow constipatoin. I suspect cf and so do doctors although they have not got it together yet but I am thinking I might be able to help him by putting him on this Nutramigen formula.???My son is 13 months but he drinks alot of milk as he won't eat???carrieinbc
 

anonymous

New member
Sharon (and others),Thanks for the info. Sam has been on Nutramagin 2 wks as of tomorrow. As I mentioned, he is vomiting and spitting up more now than when he was on Isomil. I will keep in mind what you said, though, about it taking a few wks for vomiting to stop. He has been taking the Prilosec (1 cc twice a day) for 5 days now and I can't see that it is helping at all. If things don't improve in the next couple of weeks, I believe I will request testing for CF.melissa
 

anonymous

New member
Melissa-My DS was just diagnosed two weeks ago with CF at 19 mo of age, even after one hospital ruled it out last Fall. He was born at a normal weight with a huge appetite, but never grew. Trusting my instincts I insisted to my ignorant Dr that there was something wrong. 9 BM's a day and his constant cold just wasn't right and I knew it. The fact that you are here looking shows you know something isn't right too. My Dr sent me to a GI specialist who ruled out CF with a false negative sweat test. I insisted on yet another opinion, and was finally taken seriously with the next team of Dr's we met. DS tried another two sweat tests that didn't work so they did genetic bloodwork, which confirmed it. You will do your child no justice by ignoring your instincts. We since started DS on enzymes, doubled his zantac which stopped his vomitting!!, and an antibiotic for his lungs, which was obviously missed by all of the other Drs. and he has already gained 2 pounds! If you do go somewhere, I would check into going to a CF Clinic. Best Wishes! Cale's Mommy<img src="i/expressions/heart.gif" border="0">
 
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