Hi, My 7 year old daughter has just seen a pulmonologists for the first time last week. She has had 3 pneumonias since December ( basically it has just never gone away). She developed severe food allergies when she was 7 months old (milk, beef, and pork), she had multiple ear infections from the time she was 4 months old, at age 3 she began coughing a lot at night mostly and was diagnosed with nocturnal asthma which seemed to improve with some meds only to come back after a few months at which point they took out her tonsils and adenoids. She stopped coughing at night but continued to have what we thought at the time were allergy related symptoms ( a lot of nasal congestion and coughing, sneezing). She was tested for environmental allergies at age 6 and found to have some and started undergoing allergy shots 2 twice a week. When winter came and she started getting respiratory stuff they wouldn't give her allergy shots because her lungs always sounded so bad. I took her chest x-rays to the pulmonologist and he said the one thing that was consistent in all of her x-rays wether she was sick or well was the fact that her diaphragm was flat ( in other words her lungs were always in a state of hyperinflation). He is treating her for reflux ( of which she has no outward symptoms) with prevacid once a day which hasn't seemed to help so far. He also ordered a CAT scan of her sinuses that I just got the report on today...it states that there is "extensive mucosal disease in the left maxillary sinus and the right sphenoid sinus and bilateral posterior ethmoid". He also ordered a sweat test that can't be done until April 6th in that particular lab. Does this scenario sound familiar to anyone? What do you think? By the way she has no GI symptoms...she does gain weight but has always been low on the growth scale. Thanks for your input. Signed, Nightingale.
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Awaiting a sweat test for my 7 year old
- Thread starter trishwhis
- Start date
Yes, very similiar except that my ds does not have cf. He, too, is very small for his age (despite being a large baby), has had multiple pneumonias, has asthma, environmental allergies, chronic sinusitis, silent reflux. Has had his tonsils & adenoids removed and sinus surgery (which didn't work). He's not even a carrier for cf. Your dd's symptoms definitely sound suspicious and getting a sweat test is the right thing to do. Just wanted to share my story because it is possible to have multiple drs think your child has cf only to find out they didn't (I know we're lucky)> Good luck and please update.
Nightingale, I'm the poster that responded previously. I noticed elsewhere that you asked about the sweat test. It's non-invasive, quick, not painful and you usually have the results back within 24 hrs, sometimes within hours. Also, just a question, but does your dd have nasal polyps?? They're indicative of cf and rare in a non-cf child. My ds does not have them but did have moderate to extensive mucosal disease in ALL sinus cavities , including total opacification of the left maxillary and sub-total opacification of the left ethmoid (total meaning completely filled, no air space remaining, and sub-total meaning only a few very small air pockets.) His sinus surgery was at age 4. He has needed a second surgery since about 9 months after the original but at this time we (drs and dh & I) want to wait until he's grown more. Anyway, I wanted to add one more thing. If your dd's sweat test is negative, you may want to ask for genetic testing through Ambry, esp if her sweat chloride value is 30 or above. One more thing, I'm assuming they'll refer her out to an ENT about possible surgery. If so, if he does perform surgery or does a nasal endoscopy and she turns up negative for cf, ask the ENT for a nasal biopsy AT THE TIME OF SURGERY to test for primary ciliary dyskinesia. It's a recessive genetic disease that while more rare than cf, causes very similiar problems with the lungs and sinuses plus the ears. (Kids with cf can get ear infections but as a general rule are not more predisposed to them; however, kids with pcd universally all have ear problems.) My ds was not tested for this at the time of his surgery and I didn't know to ASK. When the genetic testing came back negative on ds (sweat tested at 3, genetic test at 5), all of his drs (allergist, pulmonologist, 2 ENTs) all agreed that he needs the nasal biopsy but since it is invasive and requires the child to be put under, they're waiting til we do the next surgery. If you want more info on pcd, do a search on google for primary ciliary dyskinesia. His history sounds very similiar to your dd except that his respiratory problems started during infancy, including RSV, 3 pneumonias, 20+ ear infections, daily cough despite very aggressive asthma treatment (advair 500). Good luck, I hope the sweat test is negative!!
Thank you for the information...I have never heard of the other disease. She does not have polyps. I do remember quite clearly now (obviously I had put it to the back of my brain until all of this) that when she had her tonsils out the anesthesiologist commented on the fact that she had an unusual amount of mucus and secretions that he had to suction during the surgery. I really thought nothing of it at the time. But now I don't know. Do you think I can get the results from the lab after the sweat test or will I have to wait for the pulmonologist to call me? Thanks again so much for the info.
PCD is rare. And, like cf, the diagnosis is often missed. There are probably more people out there with it who don't even know they have it, just think they have atypical asthma, bronchiecstasis, chronic sinus disease, etc. The results are similiar to cf, thick sticky secretions get stuck in the sinuses, ears, and lungs and become infected. The same bugs that cause cfers problems cause problems with people w/PCD (pseudomonas, b cepacia, MRSA, etc). Treatment is similiar - airway clearance whether through the vest, flutter, manual cpt. Same or similiar meds are used except that enzymes aren't needed. Average lifespan tends to be longer and course of the disease is variable like with cf. The cause is different though. IN PCD the cilia don't function properly so instead of sweeping the secretions out of the sinuses, lungs, etc like it does in healthy people, the secretions just sit and become infected. Vs cf where the secretions themselves are stickier. When the ENT cleaned out our ds's sinus cavities, he had to forcibly scrape out the secretions and said they were the consistency of rubber cement. Prior to the surgery, he did not mention cf as a possibility (ds had had a very low neg sweat test, single digit). After the surgery, he really pushed for genetic testing despite the low neg sweat test because he said ds's sinus cavities looked like a cfer's sinus cavities. Turns out ds is not even a carrier. There's a group on Yahoo for pcd. You may join there to get more info.
On the sweat test, NO the lab won't give you the results. You'll have to get them from the dr. However, they'll usually fax the results to the dr. You can actually tell the lab to fax them to the dr. With ds1, the specialist that ordered the result gave us the answer the same day. His test was at 9 am, we had the answer at noon. Ds2 was also sweat tested at age 2 due to recurring pneumonias (5 in 1 yr). In his case, the pedi ordered the test, was out of the office the next day so we didn't get those results for 2 days. The waiting that time was horrible. Is your dd's test early in the am? If so, I'd call after lunch for the results. Sometimes if you push, they'll be more apt to give them to you sooner. Also, from our experience, specialists are much more likely to give results more timely. Good luck!
On the sweat test, NO the lab won't give you the results. You'll have to get them from the dr. However, they'll usually fax the results to the dr. You can actually tell the lab to fax them to the dr. With ds1, the specialist that ordered the result gave us the answer the same day. His test was at 9 am, we had the answer at noon. Ds2 was also sweat tested at age 2 due to recurring pneumonias (5 in 1 yr). In his case, the pedi ordered the test, was out of the office the next day so we didn't get those results for 2 days. The waiting that time was horrible. Is your dd's test early in the am? If so, I'd call after lunch for the results. Sometimes if you push, they'll be more apt to give them to you sooner. Also, from our experience, specialists are much more likely to give results more timely. Good luck!
Good Luck with the test on Wednesday!!!! I just wanted to respond to tell you that I am 33 years old and was diagnosed at 18. I, like your daughter had "allergies", "Asthma",respiratory infections and sinus sx and adenoids removed along w/ nasal polyps when I was 8 years old. I was always sick growing up but i guess they didn't think of CF b/c I had no digestive problems. I know now that it is very uncommon to find nasal polyps in children, except in those with CF. I wish I was diagnosed earlier to eliminate lung tissue scarring, get use to the treatments, and accept it as a way of life. It was very hard being diagnosed at that time in my life!(just starting collee and being on my own) I wish you LUCK and will keep you in my prayers!!!