Cystic Fibrosis-some experiences - please!
25 November 2005, 09:48 PM
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Cystic Fibrosis-some experiences - please!
Came back earlier from a doctor's appointment for my 2 year old son.
Basically, he is concerned that Ben is showing a number of symptoms indicative of CF, and is submiting him for sweat tests ASAP.
Has anyone had any experience of this condition - my first thoughts were to expect the worst. I'd really value some of your experiences with this condition/diagnosis.
Many thanks in advance,
Nev
Basically, he is concerned that Ben is showing a number of symptoms indicative of CF, and is submiting him for sweat tests ASAP.
Has anyone had any experience of this condition - my first thoughts were to expect the worst. I'd really value some of your experiences with this condition/diagnosis.
Many thanks in advance,
Nev
25 November 2005, 09:59 PM
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Originally Posted by shaggy1973
mate I have no idea about the condition, I cant even imagine what you and your family are going through. I am truly sorry you are having to post this tonight 
25 November 2005, 10:01 PM
#4
I have just found this.
http://www.cff.org/home/
I no nothing about it, but I have a spare hours or so, so I will have a good dig around for you. the above looks like a good starting point for you.
http://www.cff.org/home/
I no nothing about it, but I have a spare hours or so, so I will have a good dig around for you. the above looks like a good starting point for you.
25 November 2005, 10:07 PM
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Originally Posted by shaggy1973
I have just found this.
http://www.cff.org/home/
I no nothing about it, but I have a spare hours or so, so I will have a good dig around for you. the above looks like a good starting point for you.
http://www.cff.org/home/
I no nothing about it, but I have a spare hours or so, so I will have a good dig around for you. the above looks like a good starting point for you.
25 November 2005, 10:08 PM
#7
ok the two above are general websites that deal with cf, and look like they are there to help and give support and information, the bottom one from flicking through seems to be more informative.
to the point that they are very honest, I have found the link below.
I would personally suggest you do not read this until you have found out one way or another, I have just read it and I have no link to anyone with cf apart from yourself, its an upsetting read.
however its your choice, and it seems to be a straight answer.
http://www.cftrust.org.uk/scope/page...ust&pageid=107
to the point that they are very honest, I have found the link below.
I would personally suggest you do not read this until you have found out one way or another, I have just read it and I have no link to anyone with cf apart from yourself, its an upsetting read.
however its your choice, and it seems to be a straight answer.
http://www.cftrust.org.uk/scope/page...ust&pageid=107
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25 November 2005, 10:18 PM
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i carrie the cystic gene ,my sister is cystic she is 31 years old and was diagnosed at 11 months old.The lungs excrete thick sputum[phlegm]so children are normally a little chesty.They malabsorb so every thing they eat go straight through them,the sweat test is because they do sweat excesivly .Children are normally described as poor thrivers,you must ask your gp to get you to a hospital paedatrician or these test .any questions you want to ask i'll try to answer
25 November 2005, 10:18 PM
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to be honest it is pretty much as I thought.
It isn't cut and dried just yet as to whether Ben will be suffering from it - indeed, at least one of his symptoms may be explained through inheritance - Vikki (my partner) is asthmatic. We'll just have to wait for the sweat test to come through.
Thankyou so much for all your help - it really is nice to know that in this day and age there are still people that care enough to help others.
Cheers,
Nev
It isn't cut and dried just yet as to whether Ben will be suffering from it - indeed, at least one of his symptoms may be explained through inheritance - Vikki (my partner) is asthmatic. We'll just have to wait for the sweat test to come through.
Thankyou so much for all your help - it really is nice to know that in this day and age there are still people that care enough to help others.
Cheers,
Nev
25 November 2005, 10:26 PM
#10
I was about to say, there seems to be a LOT of unbiased information on the internet.
so the help and support will be there if you need it. (I really hope you dont need to look)
I am far from clued up on this disease, but after just 10 minutes of reading you can see that the life expectancy rates for this disease have increased by nearly 80% in just 45 years!
James
so the help and support will be there if you need it. (I really hope you dont need to look)
I am far from clued up on this disease, but after just 10 minutes of reading you can see that the life expectancy rates for this disease have increased by nearly 80% in just 45 years!
James
25 November 2005, 10:42 PM
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Originally Posted by PIXIEDUST
research into this illness has improved things no end and with talk about gene tharapy around the corner there is hope.I only wish you could see how well my sis is
that's good news! Really nice to know that there are people who live with it well!
I'm really trying to stay positive about the diagnosis, but when a consultant paedeatrician refers you urgently for tests, you can't help but worry.
26 November 2005, 08:44 AM
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A good friend's daughter aged 14 has CF but she has refused to let it interfere. As a result she is good at just about everything including most sports, acting and all things academic. We go skiing with them each year and she is always the first down the black runs. A nicer more positive kid you couldn't find. It's certainly a challenge but by no means all bad.
26 November 2005, 09:21 PM
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Thanks guys and girls! It has been really nice to know that there are people who have lived with this and led totally normal lives.
Last night wasn't at all nice - things feel better now, and a little less raw.
You don't know how much it has meant to me that there were people out there to talk to and offer advice - thank you all so much - will definitely keep you all updated!
Many thanks,
Nev (really ought to change that username - my real name is Tim!)
Last night wasn't at all nice - things feel better now, and a little less raw.
You don't know how much it has meant to me that there were people out there to talk to and offer advice - thank you all so much - will definitely keep you all updated!
Many thanks,
Nev (really ought to change that username - my real name is Tim!)
27 November 2005, 01:42 AM
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Nev
Probably not the best time for me to post, but I've been through the sweat test with our daughter, fortunately it wasn't CF.
I really can imagine what you are going through and like you researched everything available at the time.
All I can say say is that there a lot of other ailments that suggest the same symptoms as CF, as it happens ours had microplasma in the lungs - this was 6 months ago and we have been back in hospital since with another chest infection, which seems rife ATM.
Probably not the best time for me to post, but I've been through the sweat test with our daughter, fortunately it wasn't CF.
I really can imagine what you are going through and like you researched everything available at the time.
All I can say say is that there a lot of other ailments that suggest the same symptoms as CF, as it happens ours had microplasma in the lungs - this was 6 months ago and we have been back in hospital since with another chest infection, which seems rife ATM.
27 November 2005, 02:31 PM
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Originally Posted by Nev
I'd really value some of your experiences with this condition/diagnosis.
He used to go out drinking, clubbing, ******** everything in sight
and generally enjoying life. Only at times like when somebody leaving the college passed round a book for everybody to sign and make a few commemts in did it hit home. The last column in the book was "your lifeīs dreams" and whilst most of us were writing the usual old "get rich", "have a great job" etc he simply put "to live a long time".All a can say from knowing him is that itīs obviously something you live with 24/7, but is certainly not a sentance to lead a heavily restricted life. He used to come skiing, snowboarding etc with us and as posted earlier he was also the first to go flying down the black runs!
I often think that people take life for granted and donīt live it to the full because there is "always tomorrow". After meeting people like him for who tomorrow not coming may be sooner than the rest of us, you can appriciate why they lead such fuller lives. Even if he was to die 20 or 30 years before average I know he will have lead a better life in that time than most would who have those extra years.
I donīt know if what Iīve just written is a help or hinderance to you! Either way, good luck with your sonīs tests, and if they prove to be positive then donīt be despondant, he may just lead a better life because of it
Matt
27 November 2005, 03:07 PM
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Can't imagine what you are going through.
I really hope you find the strength to get through it whatever the outcome.
Sending lots of positive hugs to you and your family.
cath
I really hope you find the strength to get through it whatever the outcome.
Sending lots of positive hugs to you and your family.
cath
27 November 2005, 07:08 PM
#27
I had a cousin with CF, the illness can be nasty.
People with CF seem to have increasingly better lives which is great, although hard work at times.
When my cousin was diagnosed, everyone in the family was tested. I am the only carrier (of child bearing age). As I know this, I will plan carefully when I decide to have a child. It is a shame that most carriers only find out when the poorly baby arrives.
Hopefully it won't be CF, but if it is, there is plenty support about if you need it (and us).
People with CF seem to have increasingly better lives which is great, although hard work at times.
When my cousin was diagnosed, everyone in the family was tested. I am the only carrier (of child bearing age). As I know this, I will plan carefully when I decide to have a child. It is a shame that most carriers only find out when the poorly baby arrives.
Hopefully it won't be CF, but if it is, there is plenty support about if you need it (and us).
27 November 2005, 09:28 PM
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Originally Posted by Jay m A
Nev
Probably not the best time for me to post, but I've been through the sweat test with our daughter, fortunately it wasn't CF.
I really can imagine what you are going through and like you researched everything available at the time.
All I can say say is that there a lot of other ailments that suggest the same symptoms as CF, as it happens ours had microplasma in the lungs - this was 6 months ago and we have been back in hospital since with another chest infection, which seems rife ATM.
Probably not the best time for me to post, but I've been through the sweat test with our daughter, fortunately it wasn't CF.
I really can imagine what you are going through and like you researched everything available at the time.
All I can say say is that there a lot of other ailments that suggest the same symptoms as CF, as it happens ours had microplasma in the lungs - this was 6 months ago and we have been back in hospital since with another chest infection, which seems rife ATM.
Wish you, your daughter and family all the best,
Tim
27 November 2005, 09:36 PM
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Originally Posted by Cider boy
A good friend of mine has CF, got to know him back in the early 90's when we were at sixth form. He obviously had the problems with having to clear his lungs and so on, but seeing him day to day you really wouldnīt have known he had it!
He used to go out drinking, clubbing, ******** everything in sight and generally enjoying life. Only at times like when somebody leaving the college passed round a book for everybody to sign and make a few commemts in did it hit home. The last column in the book was "your lifeīs dreams" and whilst most of us were writing the usual old "get rich", "have a great job" etc he simply put "to live a long time".
All a can say from knowing him is that itīs obviously something you live with 24/7, but is certainly not a sentance to lead a heavily restricted life. He used to come skiing, snowboarding etc with us and as posted earlier he was also the first to go flying down the black runs!
I often think that people take life for granted and donīt live it to the full because there is "always tomorrow". After meeting people like him for who tomorrow not coming may be sooner than the rest of us, you can appriciate why they lead such fuller lives. Even if he was to die 20 or 30 years before average I know he will have lead a better life in that time than most would who have those extra years.
I donīt know if what Iīve just written is a help or hinderance to you! Either way, good luck with your sonīs tests, and if they prove to be positive then donīt be despondant, he may just lead a better life because of it
Matt
He used to go out drinking, clubbing, ******** everything in sight
and generally enjoying life. Only at times like when somebody leaving the college passed round a book for everybody to sign and make a few commemts in did it hit home. The last column in the book was "your lifeīs dreams" and whilst most of us were writing the usual old "get rich", "have a great job" etc he simply put "to live a long time".All a can say from knowing him is that itīs obviously something you live with 24/7, but is certainly not a sentance to lead a heavily restricted life. He used to come skiing, snowboarding etc with us and as posted earlier he was also the first to go flying down the black runs!
I often think that people take life for granted and donīt live it to the full because there is "always tomorrow". After meeting people like him for who tomorrow not coming may be sooner than the rest of us, you can appriciate why they lead such fuller lives. Even if he was to die 20 or 30 years before average I know he will have lead a better life in that time than most would who have those extra years.
I donīt know if what Iīve just written is a help or hinderance to you! Either way, good luck with your sonīs tests, and if they prove to be positive then donīt be despondant, he may just lead a better life because of it
Matt
Cheers,
Tim
27 November 2005, 09:41 PM
#30
Tim,
We had an epilepsy scare with our boy when he was 2 months old - such were the symptoms. Doing research on Google didn't bring any comfort as you are mostly faced with worst case scenarios. After a few visits to a neurologist, it turned out that he only had a bad case of reflux, which passed within a month.
Hope the eventual diagnosis in your case is similarly trivial.
Suresh
We had an epilepsy scare with our boy when he was 2 months old - such were the symptoms. Doing research on Google didn't bring any comfort as you are mostly faced with worst case scenarios. After a few visits to a neurologist, it turned out that he only had a bad case of reflux, which passed within a month.
Hope the eventual diagnosis in your case is similarly trivial.
Suresh