Hi, My name is Melissa. I was the original poster of "does this sound like cf?" Anyway, I have a few ?'s My son still hasnt been tested yet. I think my ped. reasoning is our last name is hispanic and not a big risk factor. But our children are 3/4 cacausion. Also he is our 6th child and she figures we would have known by now if we carried that gene. I was wondering if we were carriers what would be the odd's of having a cf child? Is it possible to have 1 out of 6? My son is still staying in the 3rd percentile but has droped slightly in his weight gain. His bowl habbits have changed too. He doesnt poop all the time anymore and the bm's have firmed up a bit. He only goes once or twice a week now and gets gassy. He is still breast fed and on solids. (which havent helped him gain any weight) But now he is on solid food it smells like sour rotting food. It smells like when you leave a pot of food soaking and forget to wash it right away. Yuk! I have also noticed that what ever he eats comes out looking simmular to what it did when I fed it to him. It only looks like he is partially digesting it. He also coughs frequently be the dr blows it off as post nasal drip and allergy problems. Wich it could be. I am just frustrated! I know something is wrong but nobody takes me seriously. I am scared of him getting sick because he is so small. He cant afford to loose any weight. From everything I have read if a baby is under the 5th percentile dr should check to see if there is an underlying cause. It is called failure to thrive. I dont see how his ped is not concerned. Just becuase he looks healthy doesnt mean there could be a reason for the very slow weight gain. Sorry I just needed to vent!
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? about cf
- Thread starter anonymous
- Start date
Melissa,I'm sorry you are having a hard time with yours son's doc...I know it can be aggravating. I know a woman who is the youngest of 11......and she is the ONLY one with CF. The chances of having CF are 1 in 4 with EACH pregnancy...if you AND your husband are carriers. Both parents MUST be carriers. For each pregnancy as i said..there is a 25% chance of having a child with CF...a 25% of not having CF or being a carrier...and 50% chance of being a carrier of the CF gene. And you are right...it is more common in caucasian...BUT it has been seen in other races as well. You sound like a caring mother who wants the best for her children...Keep on the doctors. Good luck to you! Is there any way for you to have your son seen by a different doctor?Dea30 w/CF
Dear Melissa,This is difficult to explain but I will give it a shot. Every gene is a pair, you get one part of the gene from your mother and one part from your father. The CFTR gene is what causes Cystic Fibrosis. If one part of your CFTR gene is mutated and the other part is not then you are a CF carrier, same goes for your husband. Each egg will carrie one of these two parts and each sperm cell will carrie one of these two parts. If the egg and the sperm cell are both carrying the mutated part the CFTR gene then your child will have CF. If the egg is carrying the mutated part of the gene and the sperm cell is carrying the non-mutated part of the gene then the child is just a carrier. It is possible that your first five kids are just carriers, they were given one mutated gene and one non-mutated gene.So child number 6 could have been given both mutated genes.I hope this answers your question.P.S. I hope the your 6th child does not have cf, but if he/she does remeber you are still very lucky to have 5 other healthy kids. When I first started coming to this site I read a post about woman who had 5 kids 4 of them had CF and two of them have passed on.Dave 29 w/cf
Melissa, If you think your child needs to be tested, push the doctor! You have to be the advocate for your child. If your doctor continues to "poo-poo" your concerns, you need to find another doctor who will listen to you.We know families who have several kids who are healthy and one with CF. CF is a genetic lottery and you can never tell what is going to happen. I come from a very large family and my daughter is the first one among many brothers and sisters and many cousins to have CF.
Hi Melissa,First of all, Remind the doc that "Hispanic" names originated in SPAIN, a country in NORTHERN EUROPE!!!!!!!!!!!!!!!!!!!!!!!!! Just because your last name is not McSomething or MacSomething doesn't mean that you are not of European descent!!!!!!!!!!!!!!!! People in Spain DO get CF! Gosh, you would think that doctors would have to know SOMETHING about history, wouldn't you? I mean how the heck do they think that the Spanish language got from Europe to the Americas? Magic? or could it have something to do with the Spanish people coming from Europe? DUHHHH!!!!! Add that to the fact that the kids are at least 75% "caucasian" anyway! (people in Spain consider themselves caucasian too, so that % might just be a bit higher)Not testing for CF might be considered discrimnination. Doc's don't want to be told that they are doing it, but that is just what it is when a person who has some obvious symptoms presents and they choose not to test them on the basis of "culture" or "descent".OOOH, sorry didn't mean to freak out there, but it makes me mad! I am not of "Hispanic descent" but my neices and nephews, from my sisters, all have Spanish last names and their cousin has CF and they could very well be carriers. I'd hate for them to have this kind of issue because of their last name. If you are both carriers of a CF mutation, the chance for EACH child to have CF is only 1 in 4 so, it is quite possible for you both to be carriers and not have a single child with CF even though you have several kids! that makes a 75% chance of each kid NOT having CF even though you are both carriers.If your doc is not addressing your concerns, You need to change docs! You are right, when they fall that low on the growth charts it is called failure to thrive, (my daughter's doc caught Rachel's "failure to thrive" early and combined with the colds and pneumonia, she wanted the sweat test). The fact that he is losing weight even on solids and that his stools are more smelly are also red flags. Are they greasy? are there yellow stains in the diaper as well as stool? Kids with CF also have post nasal drip when they have sinus infections! MANY kids with CF also have asthma and allergies too. Tell the doc that you want a sweat test done right away. Sometimes they will do it just to "rule it out" and give you peace of mind.Andrea
Melissa,Trust in your mother's intuition & please get a second opinion, at a CF Center, if possible so they can test him for CF. Hopefully it's not CF, but talking to a second doctor may shed some light into why your son is having the digestive/coughing problems even if it's not CF.Your doctor doesn't need to know that you got a second opinion if you're worried about offending him.I have a friend that is at least part hispanic (or latino) that has CF, so it's not totally unrealistic that your son doesn't have CF just because he's part hispanic.Good luck & let us know if you find out anything!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi i agree with the cocern of your child the first thing i would do is find another dr. i don't know what state you live but there are some great dr's out there yes i ubderstand the stinky poop my 17 month old kills me when we have to change him, as far as the coloring of it and the mushyness this is a sign you must look to see if it's greasy that means the food is not breaking down properly and the child needs Creon if you need a cf dr you can call a childrens hosp to get info or call the foundation or come back to the forum and i'm sure someone will beable to helphope this helpsLisa mom of Jason 17 months with cf
AbsintheSorrow
New member
And just a sidenote... I know the percentages of Caucasians with CF are higher, but that doesn't mean other cultured-people don't get it too. I've met African Americans and Hispanics and whoever else have you with CF before. Just because it's less common doesn't mean it's impossible. Get tested!! <img src="i/expressions/rose.gif" border="0">
Melissa,with a maiden name like McDaniel, you must be at least part Irish, so yup, European! I hope no one took offense to the "McSomething or MacSomnething" comment. I was just meaning names that are typical of Europeans and being Irish and Scottish myself, I used my own heritage as an example. (No Mc or Mac in there but a few O'somethings) <img src="i/expressions/face-icon-small-smile.gif" border="0">Andrea
This is the first day that I found this sight. I would like to tell you that I know how you feel. I took my daughter to the doctor for a constant cough when she was only 6 weeks old and they said don't worry, gave me a bottle of vitamins and sent me on my way. She would get sick and I would take her to the dr and sometimes they would give me 3 prescriptions and send me on my way. When she was 9 mos old I had a doctor look at her hands and say, "Huh, she has clubbed fingernails?!" I aske what that was. He said that it was a sign of someone with a heart or respitory problem. He gave me the same old prescriptions and sent me on my way. I had state health insurance so I would go see another dr--same thing! I told each of them what that dr had said--they would look and say, "Well huh, she does!" And that would be all they would say. Oh well, after about 6 or 7 drs, I finally, by chance, took her to another. I was very sick BAD FLU and I guess she caught it. I had no insurance and no money so I had to tough it out. When she got sick I called her dr only to find that he had moved to another CITY and I had not been notified. They set me up with another dr in the group. Again the same old meds!!!!She seemed like she was going to get better and then she went WAY downhill. At her cousins little league ballgame the EMS had her on the ground when she went into a coughing fit and was choking!! I took her back to see the dr again---I couldn't remember if I had told him about the clubbed fingernails. I told him and he immediately looked at them. He grabbed her leg, jerked off her shoe and pulled off her sock and looked at her toes. He then left the room and came back with another dr. She asked me 3 questions and they sent me to a genetic specialist. My daughter was diagnosed 5 weeks later complete with DNA test and her first trip to her cf dr. She was 3 yrs 8 mos old---wt 19.5 lbs--hardly ANY hair and wore a size 12mo to 2T in clothes. She will be 13 in October and is now in the hospital for some treatments. This is the first IV's and hospitalization in 4 1/2 years. He said that she has MRSA in her lungs. Just wanted to let you know that there is a DR. somewhere that WILL HELP!! Keep your chin up. I also wanted to know if anyone else has dealt with MRSA? I know what it is etc., but how does it affect pwcf? Will this be the start of some problems to come?? Will this CAUSE problems over and over?? I am kinda lost. Any info would be appreciated.Jennifer 30, mother of Barbara "Barbie" wcf
AbsintheSorrow
New member
Jennifer, it changes from person to person. And the last thing I want is to freak you out, but I'm going to tell you the truth as far as I go. I got MRSA when I was 16. And since then I've been on IV meds for lung infections about twice a year. It's happened with other people too, that MRSA tends to weaken the system just enough for some other infections to creep in. That's not to say that it does that with everyone, but I'm not the only one from what I understand. So it may cause some more opportunistic infections to set up camp, but at the same time, it's not likely to kill her. As I sit here and type I'm hooked up to IV TOBI and I have a dose of Zosyn next. But it's not so bad. She may contract more stuff and have to go on IV meds a little more often, but it's not so bad. The worst part really is being allergic to the dressing that I put over my port and not being able to wash my own hair. Haha.
Thank you very much. I appreciate the honesty. I work 12hr swing shifts and this is the first time that she has ever had to stay for ANY period of time alone at the hospital. Her father is there now. He will leave in the morning very early and I will go there around noon. She does so well that other than her cough you'd never know that there was anything wrong with her. It kills her but she actually insists on running the mile in gym. She missed the "President's Fitness" thing by about 20 sec. It took her just over 11 minutes. I thought that was great! I just hope that she continues to do as well as she can. Thanks for telling me about the MRSA. Doctors have a way of giving you a 'round about answer, but I don't trust them to tell the truth or "give t to you straight". Have a good night. I think that I can sleep now. My wondering mind is more at ease.
Hi, I just wanted to update my original post. I called the cf center and talked to a woman. I told her my sons symptoms and she agreed he needed tested, and also to see a gi doctor. She said it sounds like even if it isnt cf he needs some enzyms because he isnt digesting properly. She also said if my dr wouldnt give me a referal they would find a way to get him tested with out one. So I called my ped. and she said "cf is one of the many things that can cause failure to thrive".( funny how whe just diagnosed that when he hasnt been thriving since 6-8w old) And she will not give me a referal because she wants to see him first. Which is fine, but I dont want her running the tests. I still want a referal. I would feel better having them done by the gi dr and the cf center. I am still not sure if she is going to give me one.Andrea, Yes there is yellow stains on his diapers as well as stools. I can see it when he has firmer stools, but if he has a runny diaper it usually looks like whatever food he ate. And it smells awful. So we go to the dr on friday morning. I hope I will finally get some answers. thank you all for your support.
Augustmoon
New member
So glad to hear that you're finally getting the help you (and your son) need! Definitely get the tests (sweat and genetic testing) done at a CF Center!!!! That's VERY important!! I'm sure you will feel 100% better once you find out the underlying cause of his symptoms...whether it's CF or not! I had to DEMAND my son's sweat test after all the nurses and doctors blew it off and thought I was the "paranoid mom"! Let us know! I'll be thinking of you!
hi,I am glad that the doc seems to be seeing reason, at least to some degree. There are other things that cause failure to thrive but combined with the other symptoms, there is at the very least something gsastro related going on. The yellow stool/stains are fat not being digested. Also the cause of the stinky stool. If the ped sends you to aGI doc instead of a CF center, the GI doc can also order a sweat test. Just make sure that iti is done at a CF center, not at your local hospital. the test can be tricky to administer. Sweat test values should be 40 or under to be normal. A positive CF sweat test is usually 60 or above. anything between 40 and 60 would be considered boarderline and warrants further testing (either by more sweat tests or by genetic testing) I really hope that it is not CF but if it is, it is best to get the diagnosis sooner, so you can begin helping your little one to feel better.Please keep us updated!Andrea
Hi, well we got back from the dr office and it didnt go to well. The first thing she told me was "well I can fix this problem, just start giving him formula". I am a bf my son and believe me I have tried to give him formula and he will not take it from me or anyone else. I have been working with a lactation consultant since my son was 4 months old. Wich assures me my supply isnt the issue. So I told the dr I was not going to push formula on my son the dr got all mad and said "fine then I have to do tests for failure to thrive, and he is too small for them yet". She wasnt going to test him for anything until I declined formula. And she also said I would have to go to a diffrent lactaion consultant, see a nutritionist, and go in for weekly weight checks. She made me feel like it is MY fault my son isnt growing, and assuming it is me without checking to see if there could be a diffrent cause. She said she see's failure to thrive all the time and it is usually the mom's fault only once every 3 yrs does she see a child that has a health problem. But she did finally give me a referal for the cf test and many more tests. The lab was in shock at how much blood she wanted from such a small baby. I guess they need 10cc. I think if he needs that much taken they should'nt do it all at once. The lab coulnt find a vein in his arms after digging. I told them to stop at I wasnt going to do the blood tests. It was awful. So after torturing my son the lab tells me I can take him to the hospital and have a ped. nurse do it, that the lab isnt used to taking blood on babies. Why the hell didnt they tell me that in the first place??? As you can tell it has been a bad day. I am taking my son for his tests and finding a new ped. They can send the results to the new dr!
Augustmoon
New member
Wow! You definitely need a new ped! That's absolutely ridiculous! What about a sweat test? It doesn't hurt AT ALL???? Why is she putting him through all of that when she can AT LEAST try the sweat test first????? If you are that frustrated (and I would be!) you could call that CF Center you called before and tell them your problem! I'm sure they could get something done for you! I'm in disbelief on what your ped. is putting you through! Let us know!
Amanda the ped. ordered the sweat test at the cf center. My sons appt is monday morning. I guess i forgot to mention that. I would think she would test him for cf and then move on with more tests later also. Not test him for everything all at once. It is just too much for him. So the sweat test doesnt hurt? I was told it would take about an hour. I am relieved he is finally getting tests done, and hopefully we will have some answers. Does it take long to get the results back?