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Could this be CF? Please give me your thoughts

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Posted 11/22/2006 2:47 AM (GMT 0)
     Hi all! I just found this board and really needs some help. My daughter is 4 years old and has suffered chronic sinus infections for 2 years (since she started preschool). I just had a CF test done (blood work, not the sweat test) and I'm really nervous waiting for the results. I would like to give you all some history and tell me what you think (please be honest).

     I'm a stay-at-home mom and my daughter was always pretty healthy as a baby. As soon as she started being exposed to other kids and germs her problems began. A few weeks into preschool 2 years ago is when all this began and it's been downhill ever since. She has been to 3 ENT's, had 3 CT scans, had her adenoids removed and sinuses flushed, and of course enough antibiotics and steroids to sink a ship. And she still is no better. She's been on Nasonex and Singulair and does seem to get some relief but not a lot. She will start out with a runny nose and within a day or two it's awful, really thick, yellow snot. Then it will go into her chest. She'll get a really phlegmy cough and sometimes coughs so much at night in bed she'll throw up. She has had to be on Albuterol a few times because of her wheezing. This will all last a couple of weeks. She will then clear up but get it all again a week or two later. She's been in school 2 months and has already missed a month. But the thing that makes me think it's not CF is that she doesn't have these problems in the summer- it's only when she's in school. She doesn't taste like salt and doesn't have the club fingers but her toes do kind of look clubby (if you know what I mean). Her toes are fat and the nail grows down onto her toe. Her weight and growth is fine. My OB/GYN tested me for CF when I was pregnant and I was negative as a carrier so I didn't get her tested sooner. But the allergist said my blood test could have missed something so wanted me to go ahead and have her tested. She was negative for all her allergy testing. So at this point no one knows why she keeps getting sick. Her immune system was checked and it's fine as well. I know that it is standard procedure for ENT's to test for CF when a patient has chronic sinus problems- and that the test is usually negative. But of course I'm worried. I have a relative that works with CF kids at Children's in ATL. I was talking to her about this and she admitted she had wondered over the past couple of years if my daughter possibly had it. Oh, and I also wanted to mention, she used to have horrible constipation- to the point she would lay on the floor and scream. But I don't give her milk anymore and it seems to have gotten better. Also, there's no family history of CF on my husbands side and I'm adopted so I don't know about mine. I guess that's about it. Thank you for reading this far. I also wanted to ask...is the blood test fairly accurate? If it comes back negative is that a certainty? I appreciate any thoughts or opinions or advice.

Ann

Posted 11/22/2006 2:27 PM (GMT 0)
Hi Ann,

I can understand you being worried.

Wait for the sweat test results. Usually they dont take long at all. If it is done in the hospital you should know within 24 hours at the most.

Whatever the results are, have them do the test again. The next step would be to have the genetic mutation analysis. They should be able to swab the inside of your daughter's cheek for cells for that test. You might wait a week for that one.
alan
Posted 11/22/2006 3:54 PM (GMT 0)
Thanks for the reply. She didn't have a sweat test, she had blood work done. Is the blood test accurate? If anyone else has any thoughts please, please, please let me know. Even if it's bad I'd still like to hear them. I'd like to know so just in case they come back positive I'm not unprepared.
Posted 11/24/2006 5:22 AM (GMT 0)
If the blood test is the CF panel, in should pick up the mtation as long as it is one of th more common ones, like the delta F508 genotype.

If you get a negative, you should still get the sweat test because the blood test may miss the mutation that you carry. To date, there has been a thousand CF mutations identified, but most of the rare ones are not tested for yet.

alan
Posted 11/28/2006 11:36 PM (GMT 0)

Absolutely, ask for the sweat test.  Demand it.  My son is 13 years old and was diagnosed with CF at the age of five weeks.  I am still thankful for our pediatrician that immediately tested him for CF. 

My son has had three sinus surgeries.  Oxicillin is a nebulized medicine (antibiotic) that seems to be his only relief between surgeries.  His constipation has been a LONG battle. 

Most people who are familiar with CF can spot a CF patient a mile away.  If your educated friend suspects, please do not stop with the blood test.  Costs is the only reason why doctors have began ordering this blood test instead of the sweat test.  Good luck!

Posted 12/1/2006 3:55 AM (GMT 0)

Thanks for the replies. I have one more question. As I said before my daughters toes look kind of clubby but not her fingers. I was thinking the other night and remembered how when we go to the store alot of times she will tell me her legs are tired. Or even sometimes on walks. I haven't paid too much attention because I figured this was her way of saying she was bored and wanted to go home. But now that I think about it maybe they are tired. Would this be an indication of anything? It's been 3 weeks since the blood test and I'm STILL waiting for the results! I hope it won't be too much longer- wish I'd just done the sweat test.

I was wondering if anyone can tell me why more people haven't replied to this post. I see alot of people have looked at it and it seems like there are alot of knowledgable members here so I really thought more people would respond. Is it that no one wants to scare me? Or that I'm new here? Do you all get tired of people like me asking "Is this CF or not?" Not trying to be rude.... I'm just a mom looking for answers.

Ann

Posted 12/2/2006 3:47 PM (GMT 0)

Hello Ann and welcome to Healing Well!  Sounds like you have a lot on your plate right now.  CF can present in so many different ways.  The doctor looks at the whole spectrum of symptoms and test results to come to a diagnosis.  It sounds like that is what they are doing, eliminating other causes.  I know how frustrating it can be waiting and waiting for results and having more tests.

As for the blood DNA workup, my son's mutations have not been found as of yet (he had 2 different labs do a workup) last year.  His pulmo is not concerned right now in finding his mutations as there are more being discovered every day.  My son had two positive sweat tests and several other symptoms that lead to his diagnosis.  I will say this, I pushed for testing from his pediatrician.  I knew as a mother that something "wasn't right", trust your instincts and be your child's advocate and voice.

Wait for the blood test results and in the mean time, yes, demand a sweat test (make sure it is done at an accredited CF center/hospital).  Oh, my son is the same way with his legs being tired, I too wonder if it real or just his way of wanting to go home (he is my homebody and hates shopping, unless it's for him :)

Good luck and keep us posted.

Posted 12/2/2006 7:07 PM (GMT 0)

I took my dd to the ENT (not the dr that ordered the CF test). I told her I was waiting for results and told her about her toes and her legs getting tired. She said, "she doesn't look like she has CF. And club toes/fingers usually don't show up into the disease is pretty far along. So I would be very surprised if she has it." Is this true? Can drs look at a patient and tell. Is it possible to have clubs toes without club fingers and also without having severe symptoms or knowing she has CF? Thank you again for the replies.

Ann

Posted 12/22/2006 2:05 PM (GMT 0)
Hi Ann, did you get the results of the blood test?  Clubbing is, I believe, more noticeable in cf people when the oxygen levels in the blood  are low.

Hope you have heard news.

Sea 2

Posted 12/23/2006 3:32 AM (GMT 0)
Thank you for the info. I did hear this past Monday from the doctor. The test (blood test) came back negative. Although I'm very happy to hear this I just wonder if it's 100% accurate. I wonder if I should push for a sweat test. My daughter has been doing well with her sinus issues lately but recently the whole family got sick. Tonight she was running around playing for quite awhile and after we left she started coughing in the car. She coughed so hard she started gagging. She also seems to be out of breath after playing (running around) more than what I would expect is normal for a 4 year old. Maybe it's just asthma. Maybe she just needs an inhaler. I just don't know. I feel like if I push for a sweat test I'm just beating a dead horse since we've already received a negative result from the blood test. Any thoughts? I'm just not sure where to go from here.
Posted 12/24/2006 10:56 AM (GMT 0)

Hi Ann,

I am sorry you are still unsure.  I wish you luck in your pursuit of an answer.  There would be no harm in asking for a sweat test as it is a short harmless procedure.  Sorry your family have been unweell.  Hope you have a good Christmas.

Posted 12/25/2006 3:51 AM (GMT 0)
I would get the sweat test also.  The reason is that the CF panel does not test for all the mutations.  It only picks up what they are specifially looking for, and thats the most common types.  You should ask which specific mutations were in the panel.  Remember, there are at least 1000 known genotypes.

I would say, that if the sweat test is negative, you are pretty safe at this point.

alan

Posted 12/29/2006 4:31 AM (GMT 0)
Hi Ann,

Absolutely press for the sweat test!! I also grew up with severe sinus problems, 7 sinus surgeries and "allergies" but not diagnosed with my CF until I was 25. I also don't look like I have CF, I was a chubby child and have always fought my weight to this day at 51. There are so many variables in the CF world, no two people are alike in their symptoms. If your Dr. won't administer the sweat test contact a CF center at www.cff.org who can better diagnose your daughter or rule CF out. Wouldn't you want to know for peace of mind if she has CF or not? Good luck! And keep us posted. =)
Posted 12/30/2006 10:55 PM (GMT 0)
Hi Ann. I'm new here too.

My 6yr old has had respitory problems since he was 6 weeks old. After his 2nd bout of being hospitalized for pneumonia in 7mths this year, his pedi dr referred us to Dallas' Children's Medical Center. We've been to the asthma/allergy/immunology, ent, and infectious disesase clinics. The ENT specialist is having us do a wait and see to see if we are taking his tonsils out. He had strep throat 4 times last year and once already this year. We go back there in March. The asthma clinic monitors his condition and we go back there in February. He also has a heart murmur which the cardiologist says is innocent and not a problem.

Garon's pedi dr had already run the full battery of blood tests to test his immune system before he refereed to Children's. All results were negative. He had also done the blood test for CF which was negative. The asthma clinic did a full allergy test and everything came back negative too. We also had s inus CT scan which came back negative too. Now, the infectious disease clinic is doing a full battery of other blood tests, including the immunlogy test again, along with others. They say he may just have sticky lungs and his 7 bouts of pneumonia may not be true pneumonia, just his lungs not fully inflating (not sure if that makes sense). He was healthy at his last visit so they did a chest x-ray to compare to when he is sick. (just a sidenote: he's had so many chest xrays that he discusses them with the techs). Anyway, they did the sweat test on Dec 20 and we are waiting for the results. The holidays have really messed up getting the results.

garon had trouble when he was a baby. We used the lactose free formula after several tries. When we added cereal and bananas he would get severe diaherrea, His dr at that timre said it was a stomach virus so we took him off cereal and bananas. As soon as we gave him them again he would get the diaherrea again. It took us 7mths to figure out he couldn't tolerate bananas. When he was in the hospital in April, he developed a large blister on his arm under the IV tape. The asthma clinic tested for a latex allergy which was negative too. GEEEZZ!! They did say that even if it is negative he could still have a local reaction.

Yesterday, I took the kids to the dentist for their checkups. She said he needed some work done but that with his medical history they couldn't handle it so we will be going to the dental clinic at Children's.

Ann, I'm sorry to vent my worries and take away from your worries. I guess what I am trying to say is that I can understand and worry along with you about our babies (I know they aren't babies but to us they are, right?)

Like the others have posted, I would really push for the sweat test.

Posted 1/2/2007 2:13 PM (GMT 0)
I know how you feel. It's hard to go through test after test and still not have any answers. Please let me know what the sweat test reveals.

Posted 1/20/2007 1:23 AM (GMT 0)
My son was eight, looked like a concentration camp victim, and we had fought for a year and a half to get someone to take his symptoms seriously before we found an allergist who sent him for the sweat test. I will always be grateful that she had the professional courage to say "I don't know what's wrong with him but we're going to find out." You are her mother. You know her better than anyone. Trust your instincts. Find someone who will take you seriously. SOMETHING is wrong. It's not O.K. for a four year old to complain of weakness and to cough 'til she gags. You are not a hypochondriac or some kind of nutcase. If it's not cf, GREAT! But it's SOMETHING. My son's cf physician told me one day that she knows there are more kids like my son out there, undiagnosed, sick, even dying of things like pneumonia because pediatricians and allergists can't bring themselves to think that they are actually seeing a case of cf. After all, if a child makes it to age four (or five, or six, or eight) without being diagnosed, they wouldn't be very typical cf patients would they? It makes the likelihood of a misdiagnosis even greater. Demand answers. You never have to see these doctors again, so if they think you're nuts who cares?
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