Cystic Fibrosis Question?
On Jun 23rd my 4yr old son had to put in the hospital due to an accute pancreatitis attack. He has been home for 2 weeks and still has diarrhea,belly pain,and bloating. We had him to his gastro doctor yesterday and he wants to check him for Cystic Fibrosis. He has no lung symptoms or anything but they really seem to be leaning towards this disease. Can someone give me some info and let me know if I have to to worry about this or not. Please any info would help.
thank you guys so much for your answers. I just always thought that you had to have breathing problems with this disease. I will check out these websites and keep updated.
Tagged with: Belly Pain • Cystic Fibrosis • Diarrhea
Filed under: Cystic Fibrosis
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There are GI aspects to CF as well as respiratory ones. Something to do with needing some enzymes. My cousin has CF and is mostly normal. She does have to do regular breathing treatments and take enzymes when she eats (especially dairy), but is otherwise normal. She’s almost 20.
Wow I learned about this desease in biology class, it’s pretty serious… Check it out… Google it.. or go to cystic fibrosis.com . it gives u symtoms which appear to be some that your child is having. Good Luck , Best of Wishes and I hope your child gets better
Wow! That must be a trial to go through. I don’t Know much about Cystic Fibrosis, but I do know that the chemicals in your home have alot to do with health problems…. I would be very happy to give you information about that. please give me a call, I would be glad to help you. 717-381-9453
Cystic Fibrosis is something to be worried about. It is life threatening the average lifespan of someone with this disease i believe now is 35 (it is cronic meaning it will never go away) but it depends on the severity sometimes cystic fibrosis is only in the pancreas or only in the lungs he will mightt just have it in his pancreas and then his lifespan will/should be longer than average so he migh need a feeding tube put in to get his caloric intake up so he can grow and gain weight. He may have CF they will probably do a sweat test they put a thing on his forearm and it causes him to sweat and then test to see how much salt is in it if it is high then he will has CF if it medium then he is considered borderline CF and special care is taken if the salt count is low then he doesn’t have CF. If he does have CF then he will have a number of expensive pills like enzymes if it is in the lungs then he will have to take nebulizer treaments and other procedures and drugs to treat his CF if you would like to fing out more search the cystic fibrosis foundation. God bless the little guy i hope he is ok and free of this awful disease.
try not to worry about the unknown.
htat’s easy for me to sya
My son has CF
after his Bronchoscopys etc, I try not to worry til I get the results.
Incidentally, there are different gene mutations with cf.
Joel has 2 copies of Delta F 508.
One copy from me and one from Daddy. Delta F 508 makes up for 75% of caucasians with CF, it is defined by, the body makes the excessive sticky mucus in all areas, the lungs, pancreatic duct, the salt glands and vas deferans in joel.
there are some gene mutations that only affect the lungs, theres some that only affect the Digestion, and appaarently theres a mutation in Italy? that only renders the men infertile so they don’t have the lung issues or digestive issues!
Another thing is, the Lung issues are the most progressive part.
It takes time before the Lungs become an issue, you cn’t put a number on that like, 2 years old or 5, but it depends on how many colds an flus they get, and whether they’re (trying to find the words, its late, im tired sorry)
EXPOSED to bacteria, meaning,bad bugs that affect CFers like Pseudomonas, a bug that really only cf people get , it grows in teh mucus in the lungs, and it takes strong antibiotics to kill it, after a few bouts it can become resistant to antibiotics. It is in the environment, in warm water, water tha accumulates aroudn the sink hole, compost heaps, onion skin, hospitls, CF patients can transmit it to each other!
It also appears in burns units, wounds, and ICU.
Chest infecitons , where bad bugs grow in the mucus, make you produce more mucus, you need dbl physio, twice a day, and becaus teh lungs work harder to breath they burn up more calories and lose weight.
this is like cf 101!
Digestion problems are one of the first signs of cf.
most babies born iwth cf have intestinal blockages.
THIS ISNT TO SAY YOUR CHILD HAS CF, just teaching you about CF
it blocks the salt glands, so when they sweat they cnatre absorb sodium.
so one trick is to lick their forehead. fi it is really slaty, chances are it coud be cf.
btu if they arent salty, doesnt mean they dont have cf.
they will do a blood test to check for enzyme count in blood, then they do a sweat test, scrape the skin and check the salt levels.
I have hear of several tests coming back negative before getting the eventual diagnosis, I wish you all the best.
Please keep us in the loop
about the digestive issues.
Mucus blocks the pancreatic duct, so your natural enzymes are trapped. So Joel and Pancreatic Insufficient Cfers take man made Enzymes.
as a baby the capsule is opened and the balls are poured on apple puree, Joel had this at still 8 weeks prematurity!
Then as they get to an age when tehy can swallow lumps, they swallow the capsule.
They start on a capsule that is taken, 1 per 4 grams of fat in food, so you meaure fat content in everything you make, then they progress to 1 capsule per 8g fat in food, and theres also ones taken with 20g fat in food.
with the first type 5,000 iu they can have up to 2 capsules per kg of body weight per day.
with the 2nd 10,000 iu, Joel is on these now, 1 capsule per kg of body weight.
Joel is now 18kg so his limit is 18 capsules per day.
yeah! 144g fat per day!
They do as your bodys natural enzymes would, travel to teh small intestine where they break down food and help the body absorb fat mostly and protein.
without these, all the fat in food passes straight through, making a greasy fould smelling oily poo, and without them, it is very hard fo a cfer to gain weight.
a cfer really cant get fat!
I am trying to explain this in as Laymans terms as possible.
Feel free to email me ans ask me anything!