We have a 2 1/2 year old little girl,and a few weeks ago CF was mentioned as a possibility by a friend with a child who has CF. She will be tested next week. Meanwhile I just wondered if any of these things sound familiar to anyone. From the time she started eating solid food the contents of her diaper never did seem right to me, it would be kind of orangeish-yellow runny with what I have always said looked like undigested food. I told the dr. but they always just kind of brushed it off enen now that she is potty trainedit is not as runny but the same color kind of fatty looking still with the undigested food, then when she was old enough to talk she always says her tummy hurts, and it looks like it would,it is so swollen all of the time. The dr. ordered an ultra sound and said she was fine,and that was it. Then last Oct she was hospitalized for pneumonia/? they never really were sure what she had, but she was very sick with respitory issues I think they had basically given up and said they had done everything they could and they didn't know why she was not getting any better. Then she just did get better( I like to think that the power of prayer was involved. She was released, but has never actually gotten better completly. They have tried everything for her respitory, it just doesn't really ever get all the way better.We brought CF up to the dr. she said it is probally not CF because while my child is fairly small she is not extremly small. Although in the past 12 months she has not grown period, height ,weight,shoe size nothing. We have to use military hospitals so we see so many different drs. that I don't think any of them have really gone out of their way to find out what is going on, untill know. We will see a pulmonologist , and GI dr. next week and have tha sweat test. Any advice would be great thanks.
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Doea any of this sound familiar?
- Thread starter anonymous
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dear anonymous, I am a grandmother of a 16 month old boy that is in the 1 percentile. He had that terrible flu that was killing babies at Christmastime and was hospitalized. I went to some of his Dr. visits and finally when I went with my daughter to take him with yet another ear infection...i mentioned something to the Dr. myself about his growth and constantly having respiratory problems. The Dr. started to brush it off and advise to continue the pediasure,etc. (mind you, this baby eats like there is no tomorrow!) Then, the Dr. took another glance at his growth chart & saw that he had completely fell off the chart (at 16 mos. he is only 16 pounds) and they ordered a stool sample to be run at Children's Hospital. After that, the Doctor called my daughter and informed her that the baby was not absorbing any fat...it is all going out in his stool and ordered a sweat test to rule out cystic fibrosis. Well...you can imagine what kind of week we have had...last Thursday, the 8th I took him to the Hospital for the test and asked everyone I knew to remember him in their prayers. Just Monday, we got the negative results. We still don't know what's wrong but because of our own personal encounter with a scare of cystic fibrosis, it has made us really aware of this frightening disease. We had told ourselves that if it was CF that we would just get informed and make the best of a bad situation..but i've got to tell you that it was a relief when the test came back negative. There is also something called Celiac that has a lot of the same symptoms as Cf...have you heard of that? Easter Sunday there was a really good special on CF that a friend of mine taped for us. It was really informative..if you didn't get a chance to watch..maybe someone could get it for you. "Boomer" Esiasonhosted the program on NBC (i'm pretty sure it was NBC). No matter what happens with my gandson, i will never forget our brush with CF and will try to stay involved. This is a senseless disease and scientists are so close to a cure. I wish you the best of luck with your child and will remember you in my prayers. Grandma from Ohio
The symptoms you describe do seem indicative of CF. Please let us know how the sweat test went. This is such a great place for support, should you need it.I truly believe in the power of prayer! I am a result of the power of prayer & our Mighty God's hand. When I was under 2 I was very, very sick & close to death. I know my parents prayed for me earnestly & here I am in my 30's still truckin' along =)I will say a prayer for you and your daughter. God Bless<img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, it does. Hi, I"m Liza. I have two daughters with CF. My oldest was diagnosed at age 3, one week before our youngest was born. She never had any respiratory infections though. She didn't have a failure to thrive, she grew and really there was no clue to CF. I am hispanic and my husband is caucasian. At that time, one more reason not to think CF. No one in the family history either. She had a "pot" belly and stinky poop. Yellow like you mentioned. She was my first, I never gave it much thought. What it should look like. I figured it was from breast feeding when she was a baby and just didn't think about it when she got older. She didn't complain of her tummy hurting like you child does. It was a stab in the dark when her peds doc decided to have her tested for CF. He highly doubted it but wanted to cover all the bases. We too are military, have been since forever. I know the often pain in the neck crud you have to deal with sometimes when it comes to trying to see the same doc. My husband is AF. Does your child go to peds provider or a Family Practice provider? Where are you stationed? You should not have had so much trouble getting them to cover all the possibilities. It doesn't matter if your child does look small or not. If there hasn't been an increase in growth or weight in a year then there is something going on and they shouldn't be blowing you off. We are a classic example of not fitting the "picture" of CF. No history of CF, no history of chronic or reaccuring respiratory infections, not a failure to thrive, and for the time (almost 14yrs ago) not causcasion. Yet her peds doc had her tested, not once but twice at two different hospitals. I just went back and reread your post. Your daughter is getting tested next week. Glad to see that someone is finally getting her a sweat test. It doesn't take long to get the results back. I hope that it isn't CF but if it is please let me know if there is anything I/we can help you with. Tri-Care has gotten pretty good to work with covering 100%. If you need help or advice on where to go next let us know. We've been through it all at many different bases from NC to AZ to Germany and back. We are currently staioned in NE. If she does have CF, you'll be able to take her to a CF clinic and request that she see just one peds doc at the base hospital/clinic. She has to have a primary care provider. I'll be thinking about you and your daughter. Liza
My husband is also AF. We are at Sheppard in TX. My daughter goes to the peds clinic, but now they seem to be at a total loss and have refered all of her care out to off base drs. which are all about 3hours away. At the peds clinic they just didn't seem to be willing to do much. If it is not obvious theydon't really do much digging. I actually brought up the idea of CF to the dr. and she was totally shocked and said that she does have the symptoms, but since she doesn't fail to thrive that couldn't be it. The only reason I brought it up is because we have a family member who is a doctor, and after spending a few days with her that was the first thing he suspected. It is just so frustrating my poor little girl is suffering and I can't seem to get her what she needs. I hope that seeing the civilian drs. will give us some answers.Of course we should be coming up on orders pretty soon, and you know how that is, like starting all over with the whole thing at the next base. Do you feel like once they knew what they were dealing with they were more helpful? Well thanks for your reply.
I hate to be the bearer of bad news to the first poster and to Grandma in Ohio (i hope your still out there). Just because one test says its negative, doesn't always mean its true. If its not a respectable cf clinic they can easily screw up the test results. Also sweat test are VERY VERY easy to be messed up. Also NEVER NEVER NEVER NEVER let any doctor tell you that they rule out CF just because your child "looks" healthy, isn't to small, or because they arn't failing to thrive. Many CF patients can thrive jsut fine, their pancrease works just fine and aborbs fast and nurtients fine. On another site there is a guy at 50 who was just diagnosed with cf at 30. They first tested him for CF in the 80s i believe and it was postive BUT the doctors said "oh the test is wrong your to healthy to have CF". Now the guy has so many health problems that could have been prevented had they treated him properly from the beining. Others on this site have been diagnosed late in life for nearly the same reasons. The doctors either said the child is thriving fine and automatically ruled out CF, they had a flase negative result only tested once and CF was ruled out for years, many other reasons all the while these people kept getting sicker, even accused of being lazy or hypocondriachs by family members, co-workers and even doctors. They finally got a CF diagnoses when they, just by chance and even on purpose, changed doctors. (incase i didn't mention this is more than one person i am talking about). So PLEASE PLEASE stay on doctors cases, even get second opinions. Just because they have a degree doesn't mean they know what CF is, and thats scary! and the truth!! Usually the only ones to know about CF is CF specialists, or pulmonologists (they only know the lung part most of the time). I am sorry to sound angry, but this does make me angry. I mean CF is the number one genetic killer and yet doctors who take care of us don't even know it, or because they have taht degree think they are to good to listen to patients (parents) sugestions. And yes there is another illness that has some sypmtoms like cf because there is no cilia (hairs in lungs) in the lungs to help get the mucous up, but I am not sure if it affects the digestive systems so I don't know much about it. But both of you ahve said the children have really bad poop, hungry all the time, poor in weight---this is probably one of the more prominate sypmtoms of cf, not everyone has it but the majority does. So don't let a doctor shove the suggestion off jsut because the child doesn't "seem" to much underweight. Please look more into testing the kids. Maybe even get a DNA test. I jsut don't want to see another child get undiagnosed and yet stay sick because of false testing or doctors not listening.me
Hi again. Ooooh Sheppard. I'm from Texas and never enjoyed the thought of being sent there. My husband was there for a year for PA phase one PA school. My girls and I stayed in Ft.Worth with my parents that year. Once you get a diagnosis, then you will not have trouble getting out to the civilian hospital to have your daughter seen at a CF clinic. There just isn't much out there in Wichita. Cook Children's Hosp. in Ft.Worth is where my girls were seen when we were in Ft.Worth. Good hospital and everyone was really helpful. That was about 13 yrs ago. Although the helpful part is still there. We were caught short on enzymes one time while visiting over Christmas and a quick call to them there, some even remembered us, and they were more than willing to get us a script. Are you expecting orders or is it just time? We have moved since diagnosis, 6 times. Three times being short tours, and one overseas. When you get your orders take a look at the CFF.org website (if it turns out that it is CF for your daughter). At the CF website you can see where all the clinics are through out the US and overseas. (our overseas clinic was in Maastricht, Netherlands) Anyhow, you can know in advance where your daughter will be seen. Hand carry a copy of any records from the civilian hosp./clinic and get a copy of her military records. We used to take them with us to the new clinic but after a couple of years stopped since everything was already in the civilian records. Not to mention they don't like you hand carrying your military records anymore. If it does turn out that she does have CF and you get orders, let us know where you are going. My husband might know who you should ask to see at your next assignment, or maybe be able to find out. So what does your husband do? Mine is and ENT PA. Hospital connections are a blessing sometimes. Liza
They are sending her to Oklahoma City to several diferent specialist. We are starting out with pulmonology since her respitory stuff seems to be the biggest issue. We are going there Thursday, and I think that is where she is having the sweat test. Then from there we are going to a GI doctor for her stomache stuff. It is a childrens hospital so I hope that and the fact that they are specialist will shed some light for us. My husband is an aircraft systems instructor right now and we are waiting to see if he will get an OTS date so we can find out where we are going and when. Seems like the rest of our life is on hold right now we are just trying to get our daughter better. Hopefully we will know more after Thursday. They say the results should be back that day, Have you found that to be true?
Yes. We got the results back really fast. My daughter had two tests done the week before our youngest was born. I find it strange that they'd send you to OKcity before Ft. Worth though. Ft.Worth is only two and a half hours away. I mentioned your situation to my husband and he asked who you had seen. He says he has a mind to call them up and tell them that your child needs a sweat chloride test. Then I told him that she was scheduled to have one done. He said you need to get that straightened out before you PCS. He still asked who you are seeing there and can check too with a friend there to see who he recommends as the best Peds doc to see. My husband also said to be sure and let us know know when you find out where you are going and he will check it out to see whom you should see at your next assignment. I tell ya, it helps to have him in the hospital. As for the rest of your life being on hold waiting and seeing about an OTS date. I know that story and can surely relate. It's hurry up and wait. It seems to come around every two and half years or so. We are currently in that state ourselves. We'll have been here two years in July. My husbands got 25yrs in and is holding out until June to put in his retirement papers. IF we can hold out that long. If you've been in a while you must know the story. All the buzz gong around about things changing, then not changing, then changing again. People being needed here, then there. I say, just let us sink into the back ground and let them forget about us for a few more months, just long enough to put in those papers then they can't move us. Our oldest daughter will be entering her senior year of HS in the fall and we want to stay put just long enough for her to graduate from this school. Our younger one will go through her freshman yr. here then move, just as our older one did her freshman yr. But I surely know the anticiipation of waiting to hear. I always thought, just tell me where we're going already then I can wait. We've enjoyed our military life though. Both my husband and I are lifetime military members. Born and raised in the military. And once you know what is going on with your daughter, they will take care of you and she will get what she needs. Feel confident in that. I know it has been frustrating getting the run around but hopefully they can get to the bottom of what is gong on with her and finally get a diagnosis. I trust you will be treated well at the children's hospital in OKcity. Please if you need anything let me know. I will do all that I can to help you out. After all these years we have learned how to handle Tri-Care. Take care and keep me posted. Liza
Just read your message regarding false negative sweat tests. My grandson had the negative sweat test but by no means are we finished testing him. We know something is wrong and will get to the bottom of it. we took him to Children's Hospital, Columbus, Ohio which is a very respectable hospital. In Nov 2002 there were selected by the CF Foundation for it's therapueutic development network..clinical trials. Theyhave about 10 pulmonary specialists on staff and we have a lot of faith in them. We have only got over the first hurdle with the negative sweat test. There are a couple of other diseases that present a littlelike cystic fibrosis and we will stay on his ped doctor until we find out what's going on. he is such a tiny little fella and at first the original doctors kept looking for an answer in his ancestry but there is NO ONE that small on either side.thanks for your info on false tests, i will pass that on to my daughter and will be praying for everyone else that's waiting for answers. gramdma from ohio
Hey there, just checking in on you to see if you got the results back from the sweat test for your daughter. Just wondering how you are doing out there and how things went in OKcity. I thought about you all last week wondering if she'd gotten her sweat test and how it turned out. Liza
We did have the sweat test done on Thursday, and it came back negitive.I knew that I would be hand carring the results so I thought I would be prepared for if they didn't tell me anything. So I looked up what the results meant the night before on the internet.The sites I found all said 40-60 was borderline and above 60 was positive. Our result came back at 60 so I was panicking all the way to OKC(we had the sweat test done in Lawton on the way). Then when we got there he said it was negative. What a relief. So now we are back to a mystery problem. We do know that she has some sort of infiltration(I think that is the word he used) in the upper lobe of her right lung. He said it was on all of the X-rays since October. We are doing another long course of steroids. We just did that but I guess he wants to try again using the mask on her nebulizer. We have always done blow by because she is 2 and doesn't do well with the mask. In the mean time she has gotten sick again with a nasty cough and a heavy wheezing. So we are going back to OKC to try to find out what is going on. We haven't even seen the GI doctor yet. Although the Pulmonologist gave her Prevacid, he wants to see if that helps her tummy pain, it hasn't yet, but it has only been a week. Well at least we know one thing that it is not. Thanks for the concern.
Thanks for keeping us updated on your daughter. I am confused about your post. Are you saying that your child's sweat test came back as 60? Did your child's doctors tell you 60 is negative for cf? Was she tested at a CF CENTER?? 60 is NOT negative for cf. It means that your child needs more testing. It also means your child might have cf. It means your child produces an abnormal amount of salt, an indication of cf. A "normal, no cf" score is MUCH lower (closer to 10-15). Your child could be tested tomorrow and score 61. Then that is a diagnosis. There is not much difference at all between 60 and 61. I really can't imagine a cf center telling someone a score of 60 is negative, move on, no cf. It just doesn't make sense. One thing I have learned from our families journey with cf these past three years (and four years prior to my nephew's diagnosis at four years old) is you CANNOT just rely on the doctors. You have to be proactive and often TELL them what you want done. You need to go to a cf center get the sweat test done again and ask for ambry genetic testing. You need answers!! I know how stressful all of this must be for you.Sharon, mom to Sophia, three in July and Jack, 8 months both with cf
Keep in mind that different kits for performing sweat testing can have different reference ranges. The cutoffs maybe based on different standards. Any positive result needs to be repeated. Sweat Chloride testing is a very precise procedure and really needs to be done at a lab that has a lot of experience-such as at a CF Center.
Yes her test was 60, but no it was not done at a CF center. It was just a hospital lab. Then we went to a pulmonologist and he was also totally unconcerned with the number,they said they don't worry untill the number is like 80 so I wonder if it is just a different reference range that they were using. Do you think that maybe that could be normal on some different test kits? I looked again on the internet and I found all of the same information about 40-60 being borderline, but I just figure the pulmonologist knows what he is talking about. I hope. A pulmonologist, he would know right? We are going back soon maybe I will ask him to clarify. The day we had the test done I was so relieved for him to say it was negitive that I just didn't even think to question it. Maybe I can call him. Thanks
I'm sorry that you're getting such conflicting information from the dr. BUT, in the US, 40-60 is considered borderline and warrants a 2nd test, over 60 is considered positive. Some of the milder mutations have lower sweat chloride values that fall in the "borderline" category of 40-60 and some even have "normal, under 40 values" although rare. I would NOT take that dr's opinion as fact. Is he a pediatric pulmonologist? Is he affiliated with a children's hospital? Just my personal opinion, but I would insist on having your daughter retested, preferably at a cf center, and I would also request the Ambry genetics test. That pulmonolgist is not doing his job in my opinion. It is still very possible that your dd does not have cf, but it's also possible that she does and until she gets the right care, she will continue to have health problems. Not all cf children are off the growth charts, many are just at the bottom, like your dd, some have very good growth. Please insist on more testing. If he won't do it, go elsewhere. Ask your pediatrician what his/her opinion is. Also, print off everything you can find from the CFF that states that 40-60 is borderline and requires further testing and anything over 60 is positive and confront the dr with it. If you call a cf center and tell them your child has a sweat chloride value of 60 with symptoms of cf, they may help you get the additional test. It's around $50 in the US, VERY cheap. Good luck and I hope it's a false alarm!!
Hi, It's me again. I have to say, I am not familiar with the numbers determining +, -, or borderline. We simply took what our pediatrician told us as fact. He had my daughter tested twice before accepting her test as positive. Here's my thought. Why not ask that you be sent to Wilford Hall in San Antonio. They have a CF center there. I know of a child that was sent to Wilford Hall from El Paso. Yes, there are closer CF centers to you, like Cook Childrens in Ft.Worth. I mentioned them before. Having never driven from Sheppard to San Antonio, I can't tell you how long a drive it would be but it's possible it could be covered. This child I mentioned, I think her trip to WH was covered by TriCare. Not positive but I seem to recall her mom saying that it was paid for. I thought at the time, kinda odd, but hey that's ok if they pay for the trip. Being that it's a military hosp. they may be more inclined to agree to sending you there for the test. I don't know, it was a thought. I know you just want to get an answer to what is going on with your daughter. Keep us posted and my husband mentioned to let us know if there is anything he might be able to do to help her get seen by the right docs. He knows a few people over there at Sheppard. Liza
<img src="i/expressions/face-icon-small-confused.gif" border="0"> My son has CF also but he was diagnosed when he was 3 weeks old. He was born with a bowel obstruction. He was airlifted from the hospital in Red Wing, MN to Children's hospital in St.Paul,MN. This was very scarry for me being a single mom and my first born child. But anyways The hospital continued to give my son liquid enemas to try to get him to poop. It took four tries to get the mucolious ilious to loosen up or my son was gonna have his bowel disconnected and a glostomy bag temporarily until they were able to reconnect his bowel. My son starting pooping 15 minutes before surgery was scheduled. He also had ecoli in his blood stream and c-dif in his poop. My son was at the hospital for two weeks. On the day he was discharged he got a blood test done to see if he had Cystic Fibrosis. They tried the sweat test at first on October 16 when my son was a day old but he didn't have enough sweat. The blood test would take two weeks to get the results back.They had to send them to Massachusettes. On November 10, I called to get the results but they would only disclose the results to my son pediatrician over the phone. So I received a phone call from his pediatrician while I was at work that night that my son had 2forms of the delta 508. Then from there we choose to see the cf center in MInnneapolis,Mn. This was a very difficult thing for me to deal with. So we admitted my son to Fairview University U of M campus. We were there for 5 days for cf teachings. From there on he was in and out of the hospital many times for reflex and not eating throwing up etc... He had a G J-tube put in after christmas. And that worked good for a couple of weeks until the tube continued to coil up into his stomach. So the the doctors tried that same tube to see if that was the best plan for him. And that coil a week later. So then they weren't sure what the best plan was for him. He had another sudamoinise infection in his flem again. He was in the hospital that time for 3 weeks before the doctors finally did anision surgery. That was the beat thing they could of every done. That is a surgery that prevents my son from being able to throw up. My son was discharged from the hospital that time on March 8, 2004 and he made it almost two months before he got an ear infection and amonia with a temperature of 103.5. And he is doing alot better now. As you can see me and my son have been through alot. And I thought I was alone until I starting reading some of the stories of other cases in a way like my son. It's alot of work but my son's worth every minute of it.If you want to respond our ee-mail address is Kayden@localnet.com
Hi everyone,I just needed some insight from any one in here that is familiar with cf. My son testeted positive at 60 at least the cf nurse and dr. told me he was positive. Then they ran a second sweat test that ended up at 31, and my daughters was 20, my question is how can there be such extremes? Also i personally had my son tested three years ago because he had symptoms of cf he came in at 43 then, that place which was not a cf clinic said he was negative so I let it go. Then two months ago my son almost died from severe necrotzing lobular pneumonia and because he wasn't responding to all there meds it took three weeks to cure him. Now they ran a DNA test and its been 4 weeks and they still don't have results they said maybe two more weeks is that a normal time frame? Also ,he is thank god at a very good childrens hospital and cff clinc I lucked out that they insisited on doing further testing on my son after he got out of the hospital. The pulmonologist their all four of them insisted on following him and testing him for cf even after I told him he was negative three years ago. They told me always have the sweat test done at a cf clinic. They were upset that my sons score of 43 wasn't followed up on back then. I'm just scared out of my mind right now and the waiting is literally breaking me. We have been through so much and they were even talking about removing his whole upper right lobe for a while and now we don't know what is going to happen. My sons symptoms, he always had diahrrea up until last year and still does on and off, when he was a baby it was always yellow or green now its green a lot. He has a constant bloated tummy, constant runny nose, and frequent cough attacks at night with mucous that gets stuck. We have had to take several trips to the er for him choking on coughing up phlem. He gets tired very easily, and is always borderline anemic. Now they found he has a heart murmur. He is 5 and has basically been sickly since he was born. Just to let you all know his symptoms, does any of this sound familiar to anyone ? It seems like when he eats it just goes straight through him. Anyways, please write and tell me your insight anyone. Thank you. Amber