In 2010 my daughter had a bad case of pneumonia which ended up leaving some haze on her lung. She was okay for about 6 months then ended up getting sick again with ear and sinus infections. Since Septemer of 2010 for every month she has been into the dr and on an antibotic. She is now also being treated for asthma. The y have removed her adnoids but she is still getting reaccuring sinus and ear infections that end up with a cough which produces thick sticky phelgm. She also has a problem with her stools which she has had for a few years now. The are really big and end up clogging up are toliet. Right now she is back on antibotics with her daily asthma meds and nasonex. She has been tested for allergies and immune deficiency and both came back negitive. Her doctor told me to start asking family members about CF and immune problems. So far nooone in my family has ever had CF and really no immune problems. My grandmother did have cystic problems with her lung and had to have part of her lung removed a long time ago. Any help would be greatly appreciated she is only 5 and I would like to figure out what's wrong with her.
I would push for additional testing to figure out what's wrong with her as she does appear to have similar cf symptoms. As for family history, both DH & I have looked at geneology records that go back a lot of years and there haven't been any issues with lung problems, very young deaths....
I have a son with CF, hes 8 the sweat test game back neg. three times before the gentic test. skip the sweat and and request a gene test. CF isnt nothing to guess at. If you think she has sympotoms go for the sure thing. My opionion
I would push for genetic testing. There are over 1500 cf mutations and most doctors will do a sweat test first and then test for the 30-60 most common mutations.
DS was born with a bowel obstruction caused by meconium illeus. That extra thick mucus combined with pancreatic insuffiiency causes digestive issues. We have extensive geneology histories which go back centuries and NOBODY in our families has ever had cf.
DS' mucus is so thick his nose never runs. Just gets stuck in his sinuses and nasal passages. Your child sounds like she's got a number of cf like symptoms, so IMO -- be agressive and find out what's causing her health issues, so she can feel better due to treatment.
My 6 yr old has had bronchitus 25 times and Pneumonia 4 times. It happens at the drop of a hat. Even though he is six, he did weight 42lbs (finally!), however he was sick again badly and went down to 33lbs, even though he was eating...just more often during the day and smaller portions. He gets to the point where he coughs and can't stop. They diagnosed him with Asthma and mild allergies, but with my nursing background and of course the mother's gut feeling, I know that something else is up. He is consistently on long-acting broncodialators and chorticosteroids and every time he gets sick its massive antibiotics such as Cephalexin along with Prednisone. Even then it takes a couple of weeks to clear up, but never fully.
He had the sweat test today, but I'm still worried. I realize that it isn't a 100% test, but the thought of waiting for genetics out here is a horrid thought. My 12 yr old, whom is autistic, was on the waiting list for 2 years so that we could find out if he has Tuberous Sclerosis (positive) and Fragile X syndrome (still waiting!).
I would really like to hear other peoples opinion on this...not only so that I can calm myself down, but also so that I can get more viable information.
I'd be concerned as well based on symptoms. If not CF, then there's obviously something else going on here. Has your child ever had a respiratory (throat or sputum) to test for common CF bugs. Sometimes if they culture things like pseudomonas or steno. Maltophilia, that can be a sign for further testing.
IMO, keep pushing for answers, if anything to rule out cf
Well the sweat test came back at 60...they say it's borderline, but I want genetic tests and it's about a two year wait to get in to a genecist. The local chapter for CF was unhelpful and rather rude so I couldn't get any information from them.
I would try to find a doctor who will treat the symptoms -- treat as if he does have CF. Ask that they do a respiratory culture to see if any common CF bugs are growing. With DS, he has one done every 3-6 months and they determine what antibiotic the "bug" he's growing is sensitive to. Pseudomonas -- tobramycin and/or cipro. Steno. Maltophilia -- septra...
And with the borderline result, it wouldn't hurt to retake it. As for a geneticist --- ANYONE can collect blood and submit the test to the proper lab. In the states they have Ambry, Quest, Mayo to name a few that test for over 1500 mutations.
Just keep pushing for answers. I realize healthcare is different where you're located, but I have to remind myself from time to time that we're actually the customers, that we're paying for these tests and appointments.
We are in Canada. Here in Saskatchewan there is only one lab that deals with genetics and it's at the University Hospital in Saskatoon. I just took my 12 year old son after an almost 2 year wait to find out if he has Tuberous Sclerosis which was blood tests and a physical. Only certain lab techs are allowed to take these blood samples, as we were sent to the lab and as soon as they saw what it was for, they told us to sit and wait as the person whom can only do the drawing for genetics was unavailable at the time.
I'm thinking we are going to do another sweat test to determine what in the world is going on and get ourselves on the wait list. There really is nothing more that I can do at this point. I already have him on a high protein/high calorie diet to ensure some weight gain, but need to find out where to get the enzymes for him...too bad the local CF chapter are so vague and rude.