Alot of what you are describing sounds suspiciously familiar.....Also know that you can always have a false negative sweat test but never a false positive. If the test is positive, it's positive. However, if it's negative, it doesn't necessarily mean negative. I would be sure to have your child tested at a CF Care Center where they know what they are doing and how to read the results accurately. Voracious appetites and low weight gain is a CF symptom.....bulky foul smelling stools that float another symptom...does your child taste salty when you kiss his/her forehead? There are actually so many different symptoms that can be in different children that I can't possibly name them all....every child is different and can show different ones.My daughter presented with a bowel obstruction at two days of age and that's how she was first tentatively diagnosed. We had to wait to have her sweat tested until she was the age of 6 months old and a certain weight. Keep in mind this was 20 years ago and the testing was VERY different than it is now. Not as good and not as quick!Don't let the doctors tell you "not CF" with a borderline sweat test number or because "your child looks healthy". You are going to have to be the best advocate for your child!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Doea any of this sound familiar?
- Thread starter anonymous
- Start date
AbsintheSorrow
New member
To add to what my mom said... "your child loks healthy," never go by that. I've been told dozens of times that until I tell people I have CF, they wouldn't have a clue because I look fine.
Emily, you are so right. No one knows my son, Grayson, has an illness unless we tell them. My son wasn't diagnosed with CF until he was seven years old! Fortunately, most of his problems are GI. He has always been in in the 75th percentile in height and the 50th percentile in weight. I actually mentioned CF to his first pediatrician when Grayson was just 7 months old because he tasted salty when I kissed him. Of course the doctor immediately dismissed my concerns because Grayson was not failing to thrive. After many doctors visits to find out why Gryason had constant diarrhea, oily bowel movements and a voracious appetite, we were finally referred to a pediatric GI specialist who did a sweat test to rule out CF. The sweat test came back at 91. We then had a sweat test performed at CF clinic, and the results again were high. But Grayson was so healthy the CF doctor insisted in DNA tests which confirmed the presence of the deltaf508 gene from me and his father. Grayson has actually been absent from school fewer days this year than his healthy stepbrother. Grayson plays soccer and baseball and has no physical restrictions. He takes 5 enzyme capsules with each meal and 4 with each snack, and he takes the ADEK vitamin twice daily. Parents, whatever you do, do not let a doctor dismiss your concerns because your child looks healthy.Best wishes,Michelle
Hi everyone, I agree with what everyone is saying about looking healthy but still being ill. My sons pediatrician didn't seem to do enough for him because half the time he has been healthy. Now we are still waiting on those DNA results, he did have a 60 on his sweat test and then he had a 31 its very strange. When I had him tested three years ago he was 45 on his sweat level but the main reason I had him tested was because his skin is very salty and he has chronic diarrhea and chronic cough sometimes really bad with mucous. He is doing better now that he recovered from his pneumonia but it took a long time and he is on a brochiodiolator spray and nasal sprays with steroids to keep his airways open and his sinuses but we still don't have the dna results after 4 weeks its getting very scary. He also has chronic runny nose and inflammation inside. Its strange how they can tell you he has cf positively and then say well he scored only 31 on his second test so now we don't know. Did anybody else have this on and off problem with diagnosis ? Amber
Amber, I am surprised it is taking so long to get your DNA results. It took about 10 days to get our results. Though my son doesn't have any pulmonary problems, we are having surgery this summer to remove nasal polyps which have filled both of his sinus cavities. He constantly wakes up in the mornings with a nasty, crusty nose. Nasal polyps are very common in people with CF, and they grow back, so more surgeries will be needed as Grayson grows. The DNA results will give you a definite diagnosis. Take care.Michelle
Michelle,Here is a little hopeful thought for the future. Emily had polyps removed when she was five and with regular visits to the ENT and some meds, she hasn't had to have polyp surgery again. They do often grow back, but sometimes a one time surgery can do it! Just a "light at the end of the tunnel" sort of thought for the day! <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Wow, that's really good news. The thought of surgery is giving me a lot of anxiety. Actually, I think it's the thought of the recovery period. Our ENT hasn't painted a very pretty picture with regards to the post-surgical irrigation schedule. We have purposefully postponed the procedure in order to let Grayson get out ouf schoool for the summer. How long should we expect for recovery...days, weeks?
I'm not sure how old Grayson is (I love the name by the way). Emily was 5, so they put her to sleep. I guess they normally don't put older people out for polyps, but little ones are scared, so it's easier just to put them out. Actually the hardest part for Emily was coming out of the anesthesia. She was scared and wanted apple juice and couldn't have any until she was wide awake. The doctor kept her right side packed for a day or two and when that was removed she was done. Recovery was really simple for her. (She has had about 8 or 9 operations now for different things ... I have lost track of how many, but she seems to recover fairly well) She gets CRANKY but that's expected! <img src="i/expressions/face-icon-small-blush.gif" border="0">)I hope it goes as well for Grayson!
I'm in the process of writing down my experiences as a child with symptoms very similar to those that many of you are reporting your children are having. I am 45 years old and have asthma and food intolerances. As a child I was at least 2 standard deviations below the mean for height and weight, was hospitalized at least 20 times by the time I was 8 years old and had the CF sweat test over and over again. I do not have CF. After seeing doctor after doctor after doctor I finally received help at the National Institutes of Health in Bethesda, MD. I am extremely allergic to eggs, nuts, grains (except corn), and dairy products. As long as I do not eat those foods I can function as a normal person. I cannot bake because grains in the air set off an asthma attack.My advice is keep trying until you find the right doctor and don't let any doctor tell you that you are causing the problem or that it is a mental problem. You are your child's best advocate. Keep a log of everything your child is eating and in contact with. You will soon find a trend that will help you identify the triggers.There is hope - I'm married, have a beautiful daughter and a great life as long as I don't eat the foods that are bad for me.Good luck - my prayers are with you!
Thanks for the great information. By the way, Grayson is seven and was just diagnosed last June. Our ENT tells us that Grayson has one of the most severe cases of polyps he has seen, so we are anxious. Grayson has had a couple of other outpatient surgeries, and he did not come out of the anesthesia very well. How long was Emily's surgery?
Michelle,Hi, thanks for writing me. I wish you all the luck with your sons polyp surgery. My son wakes up every morning with dry stuff under his nose. They put him on a nasal spry with steroid for his inflammation in it too. I hate how long it is taking for results on this DNA and we saw the dr. yesterday and he says it could take up to 10 weeks if necessary. I'm worried that they have found the genes and are having a hard time figuring out how severe his is. Sometimes you can be just a carrier and not have cf so I hope we don't get an inconclusive test after all this nerve racking waiting. It's hard because they are holding off treatment for him until results. Then they'll start with lung clean out and change his meds. Has anyone else had to wait this long for the blood DNA test for cf? I hate this wait. The not knowing is horrible.Amber
Hi Amber,is your son having any GI problems? Grayson's problems are all GI, and his doctor started him on enzymes before we received the DNA results. We live in Gulfport, MS and he sees doctors at a CF clinic in Mobile, AL. His blood samples were sent to a lab in Massachusetts. I am so sorry it is taking so long to get your results. I know the waiting is agonizing.
Hi Michelle, Thanks for writing me. Yes my son has chronic Diahrrea and has since he was born. He has been to the hospital several times from dehydration from severe diahrrea with vomiting of phlem/mucous and they always gave him immediate ivs with fluids. He has always had severe coughs with choking on mucous also but its in attack forms it goes away and a month or so later it comes and its horrible. i have always made him sleep slightly elevated from fear of choking in his sleep from his coughs. He has very salty skin and sweats profusely when he sleeps. His doctor has tried many forms of cough suppressants when he has these coughs and they never work. He also has a constant bloated tummy and gassiness with burping alot. He goes to the bathroom a lot per day. His tummy never goes down. Also he has always been anemic or right on the borderline and gets tired easily . Does that all soung familiar to you? When he had this past bout of pneumonia they did a bronchoscopy on him because he was solid in his lung and they could not believe the heavy mucous in his brochial tubes. She said she drained it and it would fill right back up. Thats when they decided to do the further testing on him. He almost died from the lobular pneumonia because the meds couldn't get control of the infection. He is only 5 years old and when he catches a cold he gets very ill. Amber
Hello,My daughter also had one of the most severe cases of polyps the ENT here at Children's Hosptial in Seattle had ever seen. Poor girl was miserable (as were her parents) and her nose was starting to change shape from the massive polyps growing inside Nothing we noticed, but her Dr. did. Her operation went well. They did NOT pack her nose after surgery. Taking the packing out is painful and can start the bleeding again. Our recovery time was maybe 5 days until she was completely up to speed and feeling fine. The worst part was when she woke up from surgery. The anastesia made her stomach upset. Other than that, it was fine. She's gotten used to nose sprays. The polys did start to grow back within 3 months or so or surgery, but then we signed the girls (both have CF) up for the Ibuprophen study and the polyps have not come back. It's been 5 years now. The girls are doing very well. Now 12 & 13 years of age.I hope this is helpful.Good luck.Debbie mother of 2 w/cf
This is Debbie again,Forgot to mention the daughter with polyps had a sweat chloride test result of around 60, the other daughter who had NO symptoms at the time was 120. Go figure, their DNA showed one of the most common Delta 501 or something like that and other type is very mild, I think it was E355.
Yes, Amber...all of those GI symptoms sound very familiar. Before the enzymes, Grayson would use the bathroom several times per day, and his stools were NEVER solid. His diarrhea was never so severe that he became dehydrated, but his stomach was continually bloated, and he constantly had gas. It was amazing to watch him eat. The child at 5 years could eat more than his father! He was hungry every hour. Of course, now we know that his body wasn't absorbing all those nutrients...they were literally being flushed down the toilet. Before taking enzymes, Grayson slept a lot. He could fall asleep anywhere. His GI Doctor (who diagnosed his CF) said he was borderline malnourished. The enzymes have changed all that. His bowel movements are mostly what you call "normal" now; while he still eats more than his healthy stepbrother, his appetite has decreased tremendously; he doesn't fall asleep all the time; and he doesn't have as much gas. He takes 5 capsules with each meal and 4 capsules with each snack.
Amber-first of all, i wouldn't make any decision about surgery until you have seen a CF center- not a pulmonologist-a CF doctor at a CF Center. i cannot emphasize this is enough!! This is also for the first mother with the 21/2 yr old...bottom line- if you have a child with cystic fibrosis it is going to change your life. possibly where you live, your job, and the amount of time you must travel to the hospital. that being said, as an adult with cf, Only cf centers can give you the care that you require for a proper diagnosis. Sweat tests are not the only way to determine cf, they dont always work for everyone. and as far as weight goes, you can never tell a child has cf by their weight neccesarily. as a child i was always fatter till i was 10. i can not emphasize enough the importance of these specialists. they work in conjuction with the cf foundation, who constantly is doing research..they are on the cutting edge of the cf world. adults with cf, granted if their cf is fairly stable, can sometimes get away with seeing a just a pulmonary doc. but the critical years of cf are when you are very young.. before the ages of 13-14. if your child can remain as well as possible while theyre little, it will prevent lung scarring, bowel damage, resistance to meds and so on. usually the level health a child with cf can have determines their succes as an adult, and gives them a better chance as an adult. the critical ages are very young, so therefore they require critical care. i would strongly suggest finding a cf center in one of the US's more major cities. even if you could stay there for a week or two, they could help you to find the best possible care in your state. but i firmly feel that only they should diagnose cystic fibrosis.
So you think that even the pulmonologist can miss CF? I worry because like I said before we had a sweat test come back at 60 and it was totally just brushed off. My daughter has since been put on so much medication, just as kind of like hit or miss medicine. Daily she currently takes Pulmocort,Foradil(sp?), and albuterol in her nebulizer, and she takes Zyrtes, Singulair, Rhinocort, and Prevacid. This is all without any diagnosis really, just let's see what works. We haven't even gotten to the GI doctor we will go next week, but my daughter suffers from constant tummy pain. She is almost 3 and can't even walk in the store, or to the mail box because her tummy hurts too bad. I am really hoping that the GI doctor will help. My husband is in the military so they will not send us to a CF clinic unless she is diagnosed by one of the specialists that she is seeing now. It took us 6 months just to get this far with them. The more I read the more scared I get that they will just miss it. I just want someone or something to make her feel better. Do the GI doctors usually test for CF too maybe I will bring up her 60 result and see if he will look again. Sorry I am just venting. I am so frustrated at this point.