Cystic Fibrosis

[Beanie The Wonder Horse]

Me and the Mrs had our first born on 15th October. A couple of days later he was rushed to Manchester for emergency surgery as he has a hole in his bowels and was fitted with a stoma.

He was discharged after a week but soon developed a nasty cough and was admitted to Stepping Hill with bronchilitis. On top of this he contracted an infection called pseudomonas. After being in for three and a bit weeks he came home but had to go back in on Thursday as his breathing had got worse and he's still there now.

The doctors are dancing around it and are understandably non committal but from what I've read everything is pointing toward cystic fibrosis. We get the definitive test results on 9th December.

I'm absolutely crest fallen and trying to stay positive. Some of the stuff I've read on-line was quite upbeat and suggested sufferers can live a relatively normal life albeit with current medicine they are unlikely to live past their 30's.

Just wondering if anyone has any experience of this illness and could possibly shed any light on what we might expect should the worst be confirmed as I need some help wrapping my head around it.

 

[BatBlue]

Me and the Mrs had our first born on 15th October. A couple of days later he was rushed to Manchester for emergency surgery as he has a hole in his bowels and was fitted with a stoma.

He was discharged after a week but soon developed a nasty cough and was admitted to Stepping Hill with bronchilitis. On top of this he contracted an infection called pseudomonas. After being in for three and a bit weeks he came home but had to go back in on Thursday as his breathing had got worse and he's still there now.

The doctors are dancing around it and are understandably non committal but from what I've read everything is pointing toward cystic fibrosis. We get the definitive test results on 9th December.

I'm absolutely crest fallen and trying to stay positive. Some of the stuff I've read on-line was quite upbeat and suggested sufferers can live a relatively normal life albeit with current medicine they are unlikely to live past their 30's.

Just wondering if anyone has any experience of this illness and could possibly shed any light on what we might expect should the worst be confirmed as I need some help wrapping my head around it.

I'm sorry to hear about these troubles your going through mate and I can't imagine the pain your going through. My sister in law has C.F and although it is a nasty disease people can lead a relatively normal life! she is now 19 and has medications and has to go into hospital every few weeks for observations but apart from that is a normal teenage girl, she has a boyfriend and goes out with her mates works two jobs etc.

 

[Celeste]

Hi, so sorry you have had such an awfully stressful start to new parenthood. A poorly baby is so difficult to deal with and such a terrible worry. Was your son tested for cf when he was born? Bronchiolitis is so common with new borns at this time of year, and often asthma type symptoms persist once the virus has gone. Pseudomonas infection, although common for cf patients, can be picked up by none cf patients too.

I have worked with adults and children with cf in the past, and met some of the most amazing people ever. The condition of course isn't curable but can be managed so well these days, and children quickly adapt to the daily regime of medications and Physio. If I can be of any help at all please don't hesitate to ask. Will be thinking of you all and hope your son is soon home again.

 

[MCFCTrick]

My ex wife remarried, and two of her children were born with CF. One lived til just 12, the other 20. However, a mate in London has it, and he is 44 now .... it all depends, and breakthroughs are being made all the time .... hang in there mate.

 

[Beanie The Wonder Horse]

Thanks for your replies, it's comforting to know that the disease isn't too debilitating and he will hopefully have the chance to lead a relatively normal life.

Celeste, he had a test done early on but he had to have a small transfusion as part of the operation so the results weren't reliable.

The hospital have said that brinchilitis is extremely common and the pseudomonas could be a result of being in various hospital wards. His stools have also gone very oily (he is on high protein milk so they said this could be a result of this). He is struggling to put on weight (been on nil by mouth at times so again, could be down to this) and his skin tastes salty to me (could be imagining this though as I'm convinced he has cf).

There is a perfectly reasonable explanation for most symptoms on their own but just seems to many coincidences for it to not be cf to me now.

Just heartbreaking to see what he is going through in the first 6 weeks of life and the thought that as he grows up he'll have to wrap his head round this and that most of the dreams I've had for him over the past 9 months will likely not have chance to materiallise.

Know there's a lot of conditions which are worse and would have a far bigger impact for him but it all just seems so unfair at the moment.

 

[Bill]

Thanks for your replies, it's comforting to know that the disease isn't too debilitating and he will hopefully have the chance to lead a relatively normal life.

Celeste, he had a test done early on but he had to have a small transfusion as part of the operation so the results weren't reliable.

The hospital have said that brinchilitis is extremely common and the pseudomonas could be a result of being in various hospital wards. His stools have also gone very oily (he is on high protein milk so they said this could be a result of this). He is struggling to put on weight (been on nil by mouth at times so again, could be down to this) and his skin tastes salty to me (could be imagining this though as I'm convinced he has cf).

There is a perfectly reasonable explanation for most symptoms on their own but just seems to many coincidences for it to not be cf to me now.

Just heartbreaking to see what he is going through in the first 6 weeks of life and the thought that as he grows up he'll have to wrap his head round this and that most of the dreams I've had for him over the past 9 months will likely not have chance to materiallise.

Know there's a lot of conditions which are worse and would have a far bigger impact for him but it all just seems so unfair at the moment.

feel for you and your little boy. can only wish you all the best.

 

[Innsbruckblue]

Lost 3 cousins to CF. None lived past the age of 20, and all really suffered from it, but I know there's been lots of progress in treatment in recent years.
Hopefully they'll continue to discover new treatments and a cure, and your young one will be one of those to benefit.

 

[Celeste]

You're right all of the symptoms make sense in isolation. Really hoping for a good result from his tests. Whatever happens you will all deal with it, and he will achieve things you didn't even dream of. He's already proving what an amazing fighting spirit he has. Best wishes to you all.

 

[TangerineSteve17]

I just want to echo Celeste's sentiments. He's obviously a tough little lad and whatever happens he's got his mum and dad there.

Hope you get positive results mate.

 

[Mankymeat FC]

Sorry to hear this about your boy. My son was born in August, and has been OK so far, but you never really know. My friends son was diagnosed autistic the other week, and for the first few years everyone thought he was pretty normal. He's probably never going to leave home and his Mum and Dad will still be looking after him when they are old and frail. Such a kick in the teeth. One thing I wouldn't do, is self diagnose from the internet. You can read all sorts of horror stories about this and that, but none of it is the truth until you've got a doctor sat in-front of you telling you what the score is.

I know a little lad who had a terrible start in life. He was born with a hole in his heart and had problems with his lungs. Was in hospital for months and they had the priest out at one stage. He is 5 years old now and is completely normal. Not on any meds and doesn't look any different from any of his pals that he mucks about with.

Stay strong and positive, he'll be okay.