Cystic Fibrosis

[Katie030711]

Hi, just wondering if anyone here has a child with cystic fibrosis? If so, when was it diagnosed, what were the warning signs and how has it impacted on your child's health/life?

I'm starting to think that DS may have a mild form of CF. He is 15 months old and has never had good weight gain (been classed as failure to thrive since 6/7 months old). He also has trouble breathing sometimes and has a persistent cough. He is otherwise happy and developing normally. Drs have never worried about his breathing/cough but they've always been concerned with his weight. we have a paed appt coming up in regards to his weight. He had the newborn screening test when he was born so surely it would have showed up in that though. I'm also quite thin and suffer from asthma so maybe he's just like me and I'm overreacting?

[Angiebear74]

I don't personally have a child with CF, but my sister-in-law and her DH are both carriers and have one CF child. She was diagnosed at 8 weeks after the newborn screening tests, but they knew something was very wrong from the week she was born. If your DS had CF you would certainly know by now, I think, especially if he had the tests.

With my neice she could not hold any food from day 1, so she was tiny and milk basically went in one end and out the other immediately. She is now 6 years old and takes medications daily and whenever she eats to help her body digest fats. She also has a few hospital visits a year to check her lungs. Thankfully for her she has the strain that doesn't impact the lung function as much as others, but it is still a factor. She mostly lives life like any other kid, you would be none the wiser if you saw her.

I would talk to your doc about any concerns you have, but as I said before, I think it would have been discovered by now if he had CF.

[AliG]

Hi my DD2 has CF was diagnosed at 16 months after been told she had FTT from about 8 months. The newborn screening can miss about 5-10% as it tests for the presence of enzymes. My DD is pancreatic sufficiant so wasnt picked up.
She is almost 3 now and other than food/feeding issues if very well. Has been on antibiotics till now from when she was diagnosed.
Can I ask what your sons poos are like as that can be an indicater as well.
Just ask if you want to know more and ask you GP if he can have a sweat test to rule it out

[beebs]

Has he been tested for coeliac? My sons pancreatic enzymes came back abnormal and we were given a 90% chance of it being CF, that was the longest few days of my life, waiting for the results. It ended up being negative, and it was coeliac. They can have very similar symptoms and coeliac is a lot more common. Good luck with it.

[Katie030711]

They are going to test for coeliac too so we'll see. Beebs how has your DS been with coeliacs? When was it diagnosed?
AliG thanks for that his poo is quite normal I think. They're going to do a blood test anyway so would CF be picked up in that or would it be better to get a sweat test as well?

[beebs]

Sounds ver similar to your little one, wan't putting on weight, he vomited all the time, pancreatic tests were funny, mucous pale poos, constant stuff on his chest, always had infections and colds etc, asthma etc. He is much better off the gluten. He was 18 months when he had his endo.

I think you need a sweat test, there is no other tests for CF I don't think.

Re coeliac, there are 300 associated symptoms with it, deffo have a read up. It really is far more common than we realise. They say about 1 in 110 people have it but only 20% are diagnosed, so there are 80% of coeliacs walking around not realising they have it.

[AliG]

Get the sweat test we must have rare genes and they cant be found with an ordinary blood test and all Australian clinics go by sweat test as the golden standard. I will add DD was tested for coeliacs first as thats what we all thought it was

[Katie030711]

Thanks heaps beebs and AliG. It all makes a lot more sense now! I'll definitely be asking for a sweat test on top of the blood test and hopefully we can get down to the bottom of his weight and respiratory issues. I'll make sure I post an update when we get results back

[AliG]

it comes back with the answer you want