Our son is in the process of being tested for Cystic Fibrosis, we had one sweat test come back borderline, and will have another one done next week, along with blood work. The doctors are not even using the term "to rule out " anymore. They say that with all of his symptoms collectivly it will most likley come back that he does have it. I say "but we had only a borderline test, don't those usually come back to be negitive?" But they say that since it was not done at a "Cystic Fibrosis clinic" the results may not be very accurate. What is the difference? Am I grasping at straws here? They are also testing him for Celiac disease, I can't find much information about that. Is it sometimes similar to Cystic Fibrosis? Just a few more questions, he has this huge tummy, so big that sometimes I can't dress him in his normal clothes it seems. I have not read anything about this in anything about Cystic Fibrosis, is this a common problem with Cystic Fibrosis? Also does any one know anything about Celiac disease, does it also effect the lungs and digestive system? Last question does anyone know what does "severe perihilar, peribronchial cuffing" means? I saw this written about her lung x-ray and I also overheard the doctor tell the other doctor and they don't tell me everything, I know they don't, and at this point I have gone way past paranoid. It's probally just nothing, and I am probally over reacting. Sorry to be so long with so many questions. Hope anybody can help. By the way this seems to be a really helpful sight.
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So many questions
- Thread starter anonymous
- Start date
Welcome. Hopefully I can answer a few of your questions. Yes, it does matter where the sweat test was preformed. I have read that up to 50% of the sweat tests preformed at local hospitals (not cf centers) are inaccurate. It has to do with proper training of the technicians and experience in preforming the sweat tests. Regarding celiac disease, my sister has two neices by marriage that have celiac disease. Also, my nephew was diagnosed with celiac before they found out that he had cf (he was tested for cf after my newborn's diagnosis three years ago). You would think I would have some info for you. But, all I know is that it is also a digestive disease. If controlled by diet, the quality of life is excellent. http://www.celiac.org/ is a good website it seems.Here is a link to some common symptoms of cystic fibrosis. http://www3.nbnet.nb.ca/normap/cfsymptoms.htmYes, abdominal distension (huge tummy) can be a sign of cf. I think it has to do with malabsorption that can be corrected with enzymes. One word of advice about doctors. Don't hesitate at all to stop and ask questions. Keep them in the room until you understand EVERYTHING that is being discussed. This is your child they are talking about. If you overhear them discussing your child and are confused ask for an explanation. I have learned is that doctors are not perfect and I am in charge of my children's care. Doctors are just there to give advice. No one cares more for your child or knows your child better than you. If you find a doctor that is unwilling to answer EVERY question you have, move on until you find one that is willing to discuss your child at a level you are pleased with.I don't know what "severe perihilar, peribronchial cuffing" means. I typed it into Google and it seems to be described in very confusing terms. Your best bet would be to ask a pulmonologist your child is seeing to explain it to you. I hope you find some answers soon for your son. I know this must be very confusing and frustrating. Your son and family will be in my prayers. I am praying for a negative sweat test!Sharon, mom to Sophia, almost three, and Jack, 9 months both precious (and both have cf)
Hi, I'm sorry you're going through this uncertain time. I hope you get some questions answered soon. If your son is diagnosed w/ CF and gets treatment for it, he will feel so much better and you will finally have an answer to alot of questions. Ultimately, we hope he doesn't get that diagnosis though!Celiac is similiar to CF, with the digestive symptoms & all, but as far as I know celiac is not a lung disease. Sometimes with severe digestive problems, Dr's suspect celiac or CF.As far as the distended tummy, I have CF & have always had this "wonderful" problem. I don't know if there is a 100% accurate explanation for this, but from my experience, when I have gas, my tummy is really out there. As a baby I nearly starved to death and it was suggested that I had a "pot belly" just like the people you see on TV in poor countries do from starvation. I always wondered if/when those people do get nourishment, if the pot belly goes down or not? I'm doing so much better now as far as being at a good weight, but still have my little tummy!Please keep us informed on the 2nd test result & we'll be sending up prayers on your family's behalf. This is a good place for you to come w/ any type of question.<img src="i/expressions/face-icon-small-smile.gif" border="0">
To prepare you, a borderline test is 40-60. If his test was on the high end you will most likely get a positive result. If it was on the low end it's more likely to go the other way. Common sense I know but I say this because pediatricians do not like to worry parents so will keep you dwelling on that borderline term. We do hope it is negative and will pray for that but just in case it's not, don't put off anything, make them see you as soon as possible and get the final diagnosis. The earlier treatment starts, the better. A distended belly is quite common with CF but could also be caused from a number of other things. The sooner you are seen at a CF Clinic, the better you'll feel and don't be shy with the doctors, ask questions and tell them you want to know EVERYTHING that is going on. You are in our prayers.
Perihilar and peribronchial cuffing are signs of lung damage. It refers to inflammation and/or scar tissue. It can be temporary from a severe asthma flare or respiratory illness (ie just inflammation) or permanent (ie scar tissue). Was your child sick at the time? Did it clear up? It's also frequently seen in cf patients, esp if scar tissue is the culprit. HTH.
Augustmoon
New member
Hello...I have a 9 month old son with CF. I am sorry that you are going through this...I remember how it was (since it was only a couple of months ago) to be where you are, and it's torture...not knowing is almost worse than the actual diagnosis. I am HOPING and PRAYING that the second tests come back negative! Regarding the first test (at a non-CF Center)...I had a friend who's son tested Positive (not Borderline...but Positive) for CF on his first sweat test at a hospital (non-CF Center). When he got his second test done at a CF Center, it was negative. I don't know all of the details of his respitory problems, but whatever it was, he apparently "grew out of it". So, I am guessing the tests at Non-CF Centers can go either way, unfortunately. Regarding the belly...it is a sign of CF, but it can also be hereditary. My son w/ CF has a pot belly, but so does my daughter (without CF), and so did I when I was young (and, okay, now too) and my husband. Believe me, I'm not trying to give false hope...but I'm just telling you what I know. Although I will pray that it's negative...If it's not, and he does have CF, we will all be here for you. It's not easy the first few weeks (or EVER for that matter) but life goes on. It's different, but it DOES go on. Please know that all of us know what you are feeling and going through!!! That's why we are here! Praying for your son,Amanda<img src="i/expressions/heart.gif" border="0">
Hi thanks for the replies. The peribronchial cuffing has been there at times when he was very sick in the hospital and when he was sick at home and even when he is not sick at all. I also know that their mainly concerned with the upper right lobe. He been clear of pnumonia for about the last 3 months now but that stuff is still there in his lungs. I asked if they thought it could be scarring and they just seem kind of reluctant to answere my questions about some things right now. Also now as if we're not already worried enough, last week we had some other lab tests done to test for Celiac disease(by the way that sight was very helpful)and some other things, they said that they would call with the results, but when they called they would not tell me anything, only that the doctor would discuss the results with us. I am afraid that is not what I wanted to hear. Anyways thanks again for the replies.
Augustmoon
New member
Whatever the outcome...we'll be here for you! If you'd like to email me, feel free (augustmoon0003@aol.com) Please let me know! I'll be praying for you!Amandamom to Ethan (9months w/cf) and Kenzie (almost 4 w/o CF)
Has your child been tested for reflux and/or aspiration? Children who aspirate into their lungs can have a lot of the same respiratory issues as your child (basically food/drink is swallowed incorrectly and enters the lungs or else reflux comes up and enters the lungs). A barium swallow study tests for direct aspiration and a ph probe will check for reflux. Also, it's possible for the chest x-rays to look really bad for a long period of time and then clear up. My dd never had a clear chest x-ray from 18 m thru 2-1/2 yrs but is now really healthy and her lungs are clear.