Hi. My son is 18 months old. He was tested for CF about 6 months ago and it was the highest # without needing to be retested. I was told when I was pregnant that he could have it b/c of white spots on his abdomen, although they did get smaller as I got closer to my due date. He has had chest congestion since he was born and no doctor seems worried but he has yet to outgrow it. Right now he has a croup cough after having a cold. When he gets a cold it seems to hang on forever. The only thing that I haven't noticed is the salty skin. He isn't an unhealthy weight but he does eat like crazy usually and is still only at the 10% mark according to his pediatrician. My first question is does anybody think it sounds like he could possibly have it, and if so, who do I go see who can find out for sure since his regular doctor thinks he's fine.Thanks for your help. I would love to get an email at mom2cayla@hotmail.comThanks,Jodi<img src="i/expressions/face-icon-small-sad.gif" border="0">
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does my son have CF?
- Thread starter anonymous
- Start date
Find out where the closest CF Clinic is in your state and make an appointment with them to test for CF. For your peace of mind it would be worth the time to have another CF test done. Good Luck. I will praying that your son doesn't have CF. Lucyjane <>< <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Jodi - Sorry to hear of your situation; very frustrating. I agree with the other post; find your local cf clinic and get him sweat tested there. My son was 18 months when he was diagnosed. He did not have all of the typical symptoms, so he was misdiagnosed for quite a while. If you have any other questions, I might be able to answer, please let me know. The only other signs might be: does he poop a lot? Is it light in color, smell extra foul and not very formed? When he gets a bath, does he prune up really fast? When he is congested, are his secretions usually really thick and sticky? Sorry, I know some of this is on the gross side. Some of the symptoms you list certainly could be cf symptoms; however they could also just be coincidental. What state do you live in? Do you know where your local center is? Take Care!
Thanks for responding, it's nice to get other symptoms to look for besides the usuals. He doesn't poop a huge amount but it really has gotten foul smelling, but not every time and it is light and not very formed recently. I haven't noticed him pruning up in the bath but he's not in very long usually. His secretions are very thick and sticky, especially right now. Thank you both for your responses, I'm going to go see where the closest cf clinic is right now.
Well I have a test scheduled for the 20th, two weeks from today. He had gotten a test last June and the test was 51. The CFF said that they would have restested him right away. Guess I'll have to wait and find out...the wait is the worst. Thanks again for your responses.Jodi
He's getting the test done at University Hospital in Denver b/c he could get in sooner but the results are going to a lady at the Children's Hospital in Denver. I got the #'s from the tollfree # of the CFF. I'll definitely let you know how it goes. Hopefully the two weeks will go by fast.Thanks,Jodi
I hope your two weeks do go by quickly. You mentioned that you got the hospital number from the CFF toll free directory, but then you mentioned that you are using one hospital b/c they could perform the test at a sooner date. I just wanted to make sure that your test is being done at a CF clinic and not a local hospital. I don't want to worry you anymore, but I personally know of three people who received false positives at a non CF clinic and then received (thankfully correct) negatives at a CF clinic. It think that is worth mentioning. If worse comes to worse, I personally would rather wait a little longer (which I know sounds so hard to do) and get correct results, than have a non-conclusive or inaccurate test and have to go through the anguish of retesting.Also about your two week wait - I am sure you have alreayd visited the CFF website (www.cff.org), they they have the phone numbers, as well as names of the directors of each clinic. I don't know who you already have talked to, but sometimes talking to the nurse clinician, the social worker, or the pulmonologist themselves can help you get a quicker test date. Plead your case to them - two weeks is a long time to wait for such an important test. I know when I called for my son's sweat test, I was given an appointment one week away. When my pediatrician called for me, she was able to get an appointment in two days. I think they save a few spots in their schedule for doctor referals, etc. I think it would definitely be worth a try.Also, when you do go for your test, make sure your child is well hydrated. Also don't use any soap or lotion on him the night before and the morning of the test. Finally, I just wanted to let you know that you are definitely doing the right thing. We did the same dance with our son's doctor. She kept saying that "he was fine - he was just a small person with a big appetite." I think pediatricians don't know enough about CF to accurately refer patients for testing. Our son fit some of the criteria, but not all. Because he wan't a perfect fit, she completely ignored all our questions and worries. We actually made an appointment with her partner and she immediately asked us to get him tested. Unfortunaely, we were right and our son did have CF. Of course, there are many children who have CF-like symptoms but do not have CF. I hope that is the case with your son. Please let us know the results. I wish you and your son lots of luck and health. Katrina (robertnkatrina@attbi.com)
Unfortunately, most of his symptoms sound like CF except for the non-salty part. Be sure to ask for a test at a CF center. You will get the most reliable results from them. Other hospitals can have a tendency to do them wrong and give inaccurate results. This message boardf ios always here...ask any questions you want and you will a huge amount of answers from others who are in your shoes.Barbara<img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">
Katrina,Thanks so much for your message. I'm getting the test done at a CF Care Center, which also happens to be a hospital I guess. It's listed on the CFF website and the lady at the CFF gave me the # to call. I hope that means I'm going to the right place. I actually am doing this all on my own. I did have to call his pediatrician to get the order for the test but the lady at the CFF said if he doesn't cooperate then she will talk to the doctor on our behalf. I think I will call her back on Monday and see what she can do to get us an earlier appointment, I hope she's willing to. I'll keep you posted. Thanks again so much for your encouraging words and very helpful tips. I pray he doesn't have it but it's nice to know there are other people going through the same thing if he does have it.Thanks again,Jodi
ellesmith~There are over 900 mutations and some have not yet been discovered so I would be hesitant to just believ that he only had asthma...you may want another test done. I guess both diseases aretreated fairly similar, but make sure that your child gets enzymes if needed and watch for other signs of illness that can be found in CFers just in case he has a mild rare case.
Ellesmith-If your insurance covers it - you can always have your son's results retested. Mistakes are rare, but they do happen. I would retest both the sweat test and the genetic test. Also, I have heard a lot of good things about a lab in Costa Mesa, CA called Ambrygen - their web site is www.ambrygen.com. They claim to test for all 1,000 known mutations. I don't know the cost involved, nor do I know if it is covered by insurance; but considering your situation it might be worth looking into. To answer your questions, our son had all the G.I. symptoms (loose, foul stools), swollen belly, lots of gas, etc. His sweat test scores were 115 and 120. However, keep in mind that a higher sweat test score does not mean more CF, nor does a lower score mean less CF. Basically anything over 60 should be considered CF. What are your son's symptoms? What doctors have you talked to? My understanding is that a child should be treated according to their symptoms, not necessarily their test results. I would ask your doctor why they "offically ruled out CF (despite a positive sweat test)" and why they are treating for just asthma. Remember that doctors are only people and they do make mistakes; also as a mother, you know your child best. If something doesn't feel right to you, it probally isn't. We followed our instincts and pushed for a sweat test. Sometimes doctors need a push in the right direction. I hope this helps and I hope you get answers to all your questions. Most importanly, I hope your son really does just have asthma. Please keep us posted.
Hi Jodi! As I was reading you message and all of the replies, I was just remembering what it felt like waiting for my daughters sweat test. It definitely wears on the nerves. I read everything I could get my hands on about CF and how it is passed down. By the time I got the results, I had myself "worked up into a tizzy!" The result was positive with a count of 121, I felt like it was a death sentence judging from everything I had read. But at the same time, I felt relief, relief that we finally knew what was wrong and we could start to tackle it. Now we knew what the enemy was and what could be done, rather than searching and trying alot of things that would eventually fail. I would not wish this disease on anyone, but I thank God that my daughter was born in the past decade, because of all of the new medication and equipment that is available to us today. Although there is no cure for cf (YET), there have been so many amazing advances over the past 9 years that the future is looking better every day for those with cf. If your son's test turns out to be positive, please take comfort in this.Praying with you and God Bless, Charlotte
Hi Jodi,My son was just diagnosed about 5 months ago (he's currently 9 months). It was a total shock to everyone, including the docs. However, I agree that as devastating as the dx was, it is a blessing to have a name to all of his symptoms so that we can start to treat appropriately. It won't be long before a cure is found and the treatments out there are so advanced that most kids (and adults) live relatively normal lifestyles. I would like to respond to your question of blue lips, hands and feet. Our little guy was on Oxygen support for about 6 weeks following a bout of pnemonia (before his cf dx) and that was one of the questions we were always asked - were his lips blue. I would see if you could get your child's oxygen levels tested. He might just need a bit of a "whiff" for awhile to get him back to normal levels. I'm sorry if this all sounds scary. I just totally understand what you must be going through. I was right there feeling just as crazy with questions and worry. I really hope that you get all of your answers and that you feel better about working through this all. I wish you strength.....Salima