Hi there! Welcome to Healing well!
I'm going too give a go at explain some things of your post. Hope some of it helps! The best advice I can offer though, is speak too your child's paediatrition. Don't feel silly for asking the questions, as at the end of the doctors can't think of everything all at once, and it may be something they have missed, that could help your son.
There are milder forms of CF, as everyone acts differently too the CF gene, and also, yes it can effect some parts more than others. I know of some people with CF, who aren't affected by bowel problems, and don't need enzymes, some people only need 2 enzyme tablets with meals, some need 20.
Has your son been tested for CF, or had the guthrie heel prick at birth? The only way you will be able too know for sure whether or not your son has CF, is with a test. CF itself has a very wide range of symptoms, and just having a couple of similar ones doesn't exactly mean CF.
To my knowledge, constipation isn't particularly a symptom of CF. People with CF who do have digestion problems, have the problem of loose, greasy stools. This is because they cannot digest fat. The only time constipation comes into it, is when too many enzyme tablets have been taken, in my experiance.
Another common symptom of CF is salty skin. I believe that people with CF sweat 100% more salt than a normal person would.
CF does come with other complications too, but all would have to be tested and found by a doctor as they aren't visible.
I hope that your son starts too feel better soon, best wishes for you and your family!
Gem
Co-moderator in the: Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
imondeck
Regular Member
Joined : Apr 2006
Posts : 105
Posted 10/15/2007 6:38 PM (GMT -7)
Hello Eye2797! You got some good advice from Darkies Gem. I would definately have your son tested at an accredited CF center (sweat tested), there are other tests too. Fecal fat test, chest xrays, nasal potential difference test and genetic testing . Did your son happen to have nasal polyps with any of his sinus surgeries? Does he taste saltly or does his hands and feet prune easily when exposed to water?
Good luck and keep us posted! Hugs.
Sandra
"Measure your life by loss not gain, not by the wine drunk but by the wine poured, for love's strength stands in love's sacrifice and he who suffers most has much to give" -Goforth
Cystic Fibrosis Moderator
eye2797
New Member
Joined : Oct 2007
Posts : 6
Posted 10/15/2007 7:15 PM (GMT -7)
with his second surgery he had a large polyp removed in the sinus that you could see just by looking in his nose. Since than which was in janaury he has had polyps and than just today we are told he has little polyps starting. So he is now on nasal sprays. We just got off of antibiotics. I cant say he is salty, He does sweat a ton when he goes to sleep. I will watch his fingers and toes in the water.
His ENT we see, keeps telling us its allergies but a blood test done for allergies instead of all the needle sticks, he was very young. showed only some minor allergies nothing to be concerned about.
I just feel like I go in a cirle with this. I dont know who to talk too, how hard to push, what to say. I dont want to be like this overreacting mother, He was born at 24 weeks weighing only 1.7 pds. he is overall a normal child, but I will say he is sick most of the time.
His first 3 years of life he was always sick, mainly respitory, now he is sick mainly with sinus and cough stuff.
I just dont know what to think anymore. test for allergies, test for CF, someone mentioned getting an immune check
Krista
imondeck
Regular Member
Joined : Apr 2006
Posts : 105
Posted 10/16/2007 5:08 AM (GMT -7)
Hello Krista. The polyps should have been a big tip off to the ENT and doctor to do further testing. Demand to have your son tested at an accredited center. Hugs.
Sandra
"Measure your life by loss not gain, not by the wine drunk but by the wine poured, for love's strength stands in love's sacrifice and he who suffers most has much to give" -Goforth
Cystic Fibrosis Moderator
Posted 10/19/2007 5:05 PM (GMT -7)
Hey Krista, I'm Caitlin. I was dignosed with cf when I was 4 and I'm only 16 now, but reading everything you've been saying I would go ahead and at least mention cf to your son's doctors if not get him tested, I mean you can never be too safe and he definatly seems like he has a few symptoms. But what I was going to say involving his sinus problems, this wont help the infection, but have you ever heard of nose irrigation? I've had to have 3 sinus surgeries and I've also had polyps, but I started doing nose irrigation with an irrigation machine about a year ago and so far I haven't had to have another sinus surgery, and actually my sinus doctor has noticed a big difference and said I have no problems right now. So I just wanted to give you that small tip, I hope it helps and good luck with everything!
Caitlin
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