Question:
My nephew who is almost 7 this spring has experienced many symptoms over the years. At age 2 he had a really bad case of croup and ended up in the hospital. Following this he has recurrent cases of pneumonia. The doctors later diagnosed him with asthma. then he started to wake in the night with stomach cramps and such. My sister in law took him to see naturalpath doctors who changed his diet etc. He seemed to get better for a few years but still had nebulizers with meds to alleviate his dry cough and such. She also put him on large doses of vitamins and digestive enzymes. He has a big appetite but rarely gains any weight he is in the 3rd percentile for his age. Around the age of 4 they had sent a nurse to their home to show her how to do chest therapy around that time she was told to see a pediatric specialist and was told to take the xrays with her but she never did go. She kept up with vitamins and such and he seemed ok. The other night she informed me that his bowel movements float in the toilet and they always sorta have but he does not ever get diarreaha its the opposite very large hard to pass stools
she also told me has has bad breath and he also sometimes gets stuffed up in his nose like he has a cold but it just stays in his nose. Now for the past 8 days he has been having exreme stomach pain that comes on worse mid afternoon and lasts untill bedtime she has taken him to the doctor and was told to come back in a few days it symptoms do not improve. I have mentioned this to her about Cf a few years back but she didn't belive that was it because there is no family history etc. So what I want to know from you guys out there is isnt is possible that all the meds he takes for asthma and the digestive enzymes he take help his symptoms which makes it look like he is ok. I think he needs to be tested. Doctors in the past I think have mentioned other things like celiac disease and just recently chrohns disease but It seems they never put the symptoms together I find it remarkable how often kids are diagnosed with asthma and allergies, and later it turns out to be CF. Any replies will be appreciated!
Answer:
I don't think that most people who find out their child has CF have a family history. When DS was first diagnosed, we all kept saying the same thing -- there's no family history and DH's dad comes from a huge family.
It's hard to sit by and see loved one's dealing with health problems like this and not want to get tested. Sometimes people are too afraid to find out the test results that they don't want to go through testing.
Answer:
As for my nephew, he had a sweat test and it came back negative. He was tested for celiac, also negative, was tested for lactose intolerant and it was negative. But he keeps on coughing and coughing and now they say it is his asthma again. So can the results be wrong and do they need a second opinion. How can you find out if the hospital in your area is CF accredited or not?
Answer:
Are there any Children's Hospital's in your area? If you happen to live near Omaha Nebraska I can give you the name of our CF/Pulmonary Specialist who is excellent. I'm in Texas but she just relocated to Omaha Nebraska. We are still looking for a replacement for her.
And yes there is another test for CF and it's a genetic test. They draw blood and send it to a lab, in our case it Ambry Genetics. In about 4 - 6 weeks you'll get a report stating if your child has tested positive or negative to CF. There are many different variations but the Genetic testing can tell you which strand you have if the test is positive. In our case the genetic test was negative too. Our doctor said the sweat test can miss about 2% of CF cases that is why she wanted the Genetic testing done. It would be worth asking about.
Good Luck.
Answer:
The Cystic Fibrosis Foundation has a list of accredited CF clinics. DS passed his sweattest with flying colors -- his was 35 -- not even borderline. However, his blood test(s) showed he had CF.