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- Thread starter Stusguys
- Start date
Mockingbird
New member
If he's six years old and has survived without medication until now, then he's probably really healty. =-) The doctors will probably set him up with some medication to help with his stools and breathing, and other than that I'm guessing he'll have an active, healthy childhood, like a lot of the rest of us. =-) Oh, and you'll probably have to change his diet a bit, but that';s no big deal. Most kids like high-calorie foods. If you have any questions don't be afraid to ask, and I know there are a lot of parents on here who can relate to what you're going though. Take care. =-)
Getting the initial CF diagnosis can be frightening and overwhelming. To a lot of parents its also so difficult because we do not have any knowledge about the disease. My first piece of advice is to educate yourself about CF. The Cystic Fibrosis Foundation is a good place to start. If you just search "CF" you may be reading some information that is very dated and often very scary! There is also a book by Dr. David Orenstein that is full of information.
I can tell you that CF affects everyone so differently. Some have a milder course, some have it very difficult. Some have more digestive problems, others more respiratory, others suffer in both areas. Keep that in mind when you are visiting and reading posts by others. You will soon learn to "read" your child's symptoms very clearly as time goes by.
Most likely, you will get an appointment with a local CF center and be introduced to the "team" - pulmonologist, respiratory therapist, nutritionist, social worker, nurses, gastroenterologist. It can be overwhelming, but you will be happy to see that you have a team of professionals on your side. Take notes, take prepared questions - I find the more informed I am, the more the team is willing to share information with me.
It will take some time to adjust to it all, but you will. Also, be there for all your child's questions and fears, reassure him, but also be honest and upfront about treatments and medications. With CF, preventative and aggressive care is so important in staying healthy. Good luck and welcome to the boards - there are a lot of caring and knowledgeable people here.
Maria (mother of three daughters, the youngest, Samantha w/cf)
I can tell you that CF affects everyone so differently. Some have a milder course, some have it very difficult. Some have more digestive problems, others more respiratory, others suffer in both areas. Keep that in mind when you are visiting and reading posts by others. You will soon learn to "read" your child's symptoms very clearly as time goes by.
Most likely, you will get an appointment with a local CF center and be introduced to the "team" - pulmonologist, respiratory therapist, nutritionist, social worker, nurses, gastroenterologist. It can be overwhelming, but you will be happy to see that you have a team of professionals on your side. Take notes, take prepared questions - I find the more informed I am, the more the team is willing to share information with me.
It will take some time to adjust to it all, but you will. Also, be there for all your child's questions and fears, reassure him, but also be honest and upfront about treatments and medications. With CF, preventative and aggressive care is so important in staying healthy. Good luck and welcome to the boards - there are a lot of caring and knowledgeable people here.
Maria (mother of three daughters, the youngest, Samantha w/cf)
As freightening as this seems right now, it's probably a small relief to finally have an explanation to the breathing issues & stool issues. These issues can now be treated and you'll notice improvement in these areas too. Hopefully your son will start to feel better w/treatment too.
Please feel free to ask any specific questions you may have and we'll try to help.
Please feel free to ask any specific questions you may have and we'll try to help.
Perhaps these questions seem silly, does it get progessively worse?
Do all boys have late puberty, My son is very active he plays all day. Will he be likely to play football, or even tennis through grade school and high school.
I have seen people posting messages on this board that have cf, but are 53, but it onset late. Is that age achievable with early onset?
Are there any organs that are not affected by cf?
Do all boys have late puberty, My son is very active he plays all day. Will he be likely to play football, or even tennis through grade school and high school.
I have seen people posting messages on this board that have cf, but are 53, but it onset late. Is that age achievable with early onset?
Are there any organs that are not affected by cf?
CF is a progressive disease, but the progression is often very slow. There can be also be bad years and good years. Winters can be difficult for some while others have problems in the summer. I believe everyone's quest in CF is to keep from having their lungs colonized by certain bacteria. There are many effective antibiotics to prevent this, with new ones coming down the pipeline all the time. Airway clearance is essential for healthy lungs and must be done everyday.
Since CF is genetic, people are born with it. The onset of symptoms varies. Your son's onset of symptoms is not necessarily early. My daughter's symptoms started right after birth with failure to thrive and by four months she was having respiratory problems. Many babies are diagnosed before their first birthday's because of their inability to gain weight, or persistent pneumonias.
Currently the median age of survival for CF is 35 years. This means that half of the people with CF live to 35 and half do not. This median age has been rising every year which is very encouraging.
I would encourage your son to continue with sports and exercise. It's a great workout for his lungs. I'm sure your doctors will agree. The important thing is to keep him hydrated at all times.
I'm not sure about the puberty issue in males. I know many males have reproductive problems - I'm sure others can help give you more info. Hope this helps, and no question is silly, ask away.
Maria (Sami's mom)
Since CF is genetic, people are born with it. The onset of symptoms varies. Your son's onset of symptoms is not necessarily early. My daughter's symptoms started right after birth with failure to thrive and by four months she was having respiratory problems. Many babies are diagnosed before their first birthday's because of their inability to gain weight, or persistent pneumonias.
Currently the median age of survival for CF is 35 years. This means that half of the people with CF live to 35 and half do not. This median age has been rising every year which is very encouraging.
I would encourage your son to continue with sports and exercise. It's a great workout for his lungs. I'm sure your doctors will agree. The important thing is to keep him hydrated at all times.
I'm not sure about the puberty issue in males. I know many males have reproductive problems - I'm sure others can help give you more info. Hope this helps, and no question is silly, ask away.
Maria (Sami's mom)
Purplelungs
New member
Yes its progressive but also unpredictable....meaning there is no way to tell how fast or slow it will get worse. Unpredictable for puberty as well...both male and female cfers can have late puberty...another one of those that some have it late and some dont....Its also a factor of if late puberty is in the family, were you a late bloomer or your wife? that sort of thing contributes. Whatelse that could cause late puberty is malnutrition. He can play football, soccer, tennis, track, cheerleading lol whatever he wants to do. I have a friend that played rugby, another tennis, went to school with a cfer in jr high that was in track and very good. I was just not athletic.
Yes reaching 50 is possible whether you show symptoms late or early. The oldest known cfer was around 73 when she passed away recently and she showed alot of symptoms from birth. I forgot when she was finally diagnosed but she already had kids when she found out. She had to have tube feedings from the time she was born for a good while, and had frequent pnuemonia...and other problems and lived to be 73. I am friends with people ranging from their teens to 50s...a grandmother with cf, several people who have had transplants, to some that show very mild symptoms. They are all doing great even though they have had very tough times. They all plan on living a long time too.
The organs, depends on how the cf affects a person. But yes eventually all organs are affected somehow. Sometimes its just the lungs, sometimes just the digestive organs, sometimes both. Over time with all the meds the liver and kidneys can be affected. Some people have problems with liver and kidneys sooner. Some people never have problems. I think really the only organ not affected would be the brain...but sometimes the phycological part affects that i guess you can say.
Im not trying to scare you but I wont lie either. Just one thing to keep in mind is that cf affects everyone differently, there are so many senarios. But that doesnt keep a person from doing what they like to do. Ok i guess it can at some point and time but while a person is still healthy enough and wants to they can go do all sorts of sports or whatever they want. People with cf still can live a happy normal life with friends, love life, sports or any activites. Sometimes its just harder to do.
Yes reaching 50 is possible whether you show symptoms late or early. The oldest known cfer was around 73 when she passed away recently and she showed alot of symptoms from birth. I forgot when she was finally diagnosed but she already had kids when she found out. She had to have tube feedings from the time she was born for a good while, and had frequent pnuemonia...and other problems and lived to be 73. I am friends with people ranging from their teens to 50s...a grandmother with cf, several people who have had transplants, to some that show very mild symptoms. They are all doing great even though they have had very tough times. They all plan on living a long time too.
The organs, depends on how the cf affects a person. But yes eventually all organs are affected somehow. Sometimes its just the lungs, sometimes just the digestive organs, sometimes both. Over time with all the meds the liver and kidneys can be affected. Some people have problems with liver and kidneys sooner. Some people never have problems. I think really the only organ not affected would be the brain...but sometimes the phycological part affects that i guess you can say.
Im not trying to scare you but I wont lie either. Just one thing to keep in mind is that cf affects everyone differently, there are so many senarios. But that doesnt keep a person from doing what they like to do. Ok i guess it can at some point and time but while a person is still healthy enough and wants to they can go do all sorts of sports or whatever they want. People with cf still can live a happy normal life with friends, love life, sports or any activites. Sometimes its just harder to do.
Purplelungs
New member
No problem. Eventually the shock will wear off and your family will get into a routine and it wont seem as bad as it does now. Sure scary still for the unknown and things that happen for the first time...But you will know how to handle it and know you have each other. I am very happy I am 22 and married for 3 years (no kids) i have a wonderful husband and a loveable doggy. We have our own house (work and working hard for it). Many people are going to college and fullfilling their dreams. I know of a cfer and his wife that started their own business. There is a cf that runs marathons, a lady that does the ironman thing. A another great friend of mine is a weightlifter, who has only 20% lung function and this dude is huge, he is engaged, finishing up college to do some smarty computer stuff...and is closing on his first house in a few weeks...he is 25. My friend thats on here is going to college she just got accepted to somewhere (sorry i forgot the school) in PA, has had a transplant...and she is just amazing to me. We are living with this disease and are breaking the median age every year...we live and are happier than people ever expect.
I just want to stress, as the above people have, how important sports/exercise is. The longer he keeps active the better, it can be one of the best things for people with CF. Most likely, especially through adolescence, he wont have any limitations as far as exercise, but rather should be encouraged in that area. good luck, no questions are stupid.
caitlin
caitlin
Everyone has posted what I would have told you about a diagnosis at this age means he is pretty healthy, exercise and activity is VERY important and if your son can stand running and other active sports- it is very important to encourage it.
Just a breif history on my relationship with CF... I am married to a 24 year old man with CF, who will be 25 in October. He was diagnosed at 18 months with failure to thrive (no weight gain, less than 25% for his age...) and lung infections. After his diagnos and appropriate medications and therapy, he gained weight and has been fairly healthy since then. In 2003 he started having more frequent lung infections (he previously had 2-3 from the time of his diagnosis until he was about 22, so they treated him with a new medication which seemed to make a difference. We also got a chest PT (airway clearance) vest from www.thevest.com. It realy cuts down on the time I spend doing manual chest clearance on him (use to be 1 hour in the morning, 1 hour in the evening) but now he uses the vest 2 times a day for 20 minutes and I don't even have to be home for him to do it. I would attribut his high health to his activities (he played soccer all throughout elementary, JR high and high school), medications (although as a teen he went through a 2-3 year rebellious "im not doing my meds" phase) and his WEIGHT. Maintaining his weight has been very important to him and I believe is directly related to his health as well. He eats all the time, even with the enzymes, drinks boost plus nutritional shakes (calories and protein are important, as is fat but if you take in enough calories/protein the fat will take care of it's self) and drinks weight gainer shakes. He is currently 192lbs and 6 feet tall, quite a feat for someone with CF. Also, in the last few years he has spend less time doing fat burning activities (i.e. running, soccer) and more time doing weight lifting to put on muscle (which weighs more) and therefore keep his weight at a healthy level.
Mark is a full time student and will graduate with his BA in May 2006 where he plans to work full time if his health can handle it, but at least part time.
We are planning for a family for a few years and are both very excited about having children. This is not a fact for every male with CF, but some males with CF are infertile. This does not mean they cannot have biological children, there are methods to extract sperm from the testicles. The "infertility" part just means they might not be able to get a woman pregnant naturally. I have actually created a CF website geared towards males who have CF and have male factor infertility. You can visit it at www.cysticfibrosismaleinfertility.com if you are interested. I am sure it is not at all a priority right now, but someone is sure to tell you that male infertilty may someday have a part in your sons life, and then leave you with no explanation. Many doctors do that to teen and young adult males and then leave them without any information about what they can do about it so when it comes time... you'll have the appropriate information.
I wish you the best and encourage you to utilize this site for support and just some friends who are going through or who have gone through what you are experienceing. As a wife to someone with CF, I can't always relate to everything a parent is posting as I am a wife, not a mother of a CFer. But all the same, there are different questions that I cna answer about an older CFer that a parent with a young CFer hasn't experienced yet.
Welcome to the site,
Just a breif history on my relationship with CF... I am married to a 24 year old man with CF, who will be 25 in October. He was diagnosed at 18 months with failure to thrive (no weight gain, less than 25% for his age...) and lung infections. After his diagnos and appropriate medications and therapy, he gained weight and has been fairly healthy since then. In 2003 he started having more frequent lung infections (he previously had 2-3 from the time of his diagnosis until he was about 22, so they treated him with a new medication which seemed to make a difference. We also got a chest PT (airway clearance) vest from www.thevest.com. It realy cuts down on the time I spend doing manual chest clearance on him (use to be 1 hour in the morning, 1 hour in the evening) but now he uses the vest 2 times a day for 20 minutes and I don't even have to be home for him to do it. I would attribut his high health to his activities (he played soccer all throughout elementary, JR high and high school), medications (although as a teen he went through a 2-3 year rebellious "im not doing my meds" phase) and his WEIGHT. Maintaining his weight has been very important to him and I believe is directly related to his health as well. He eats all the time, even with the enzymes, drinks boost plus nutritional shakes (calories and protein are important, as is fat but if you take in enough calories/protein the fat will take care of it's self) and drinks weight gainer shakes. He is currently 192lbs and 6 feet tall, quite a feat for someone with CF. Also, in the last few years he has spend less time doing fat burning activities (i.e. running, soccer) and more time doing weight lifting to put on muscle (which weighs more) and therefore keep his weight at a healthy level.
Mark is a full time student and will graduate with his BA in May 2006 where he plans to work full time if his health can handle it, but at least part time.
We are planning for a family for a few years and are both very excited about having children. This is not a fact for every male with CF, but some males with CF are infertile. This does not mean they cannot have biological children, there are methods to extract sperm from the testicles. The "infertility" part just means they might not be able to get a woman pregnant naturally. I have actually created a CF website geared towards males who have CF and have male factor infertility. You can visit it at www.cysticfibrosismaleinfertility.com if you are interested. I am sure it is not at all a priority right now, but someone is sure to tell you that male infertilty may someday have a part in your sons life, and then leave you with no explanation. Many doctors do that to teen and young adult males and then leave them without any information about what they can do about it so when it comes time... you'll have the appropriate information.
I wish you the best and encourage you to utilize this site for support and just some friends who are going through or who have gone through what you are experienceing. As a wife to someone with CF, I can't always relate to everything a parent is posting as I am a wife, not a mother of a CFer. But all the same, there are different questions that I cna answer about an older CFer that a parent with a young CFer hasn't experienced yet.
Welcome to the site,
The fact that your son was born in this day and age is SO on yours and his side. When i was diagnosed ( 3 years old) in 1968 the survival age was like 10 or something like that. My parents were told i wouldnt make it to 5. ( i was malnourished) It took a long time for them to finally diagnose me because noone really knew what cf was back then. I went on to play soccer, tennis, and did every single thing any other kid did. ( then again my cf was mild). I went on to get married and then divorced 6 years later, and now live on my own. I got b.cepacia about 8-1/2 years ago and it has changed things for me, but it didnt stop me from building my own muscle car ( which has been a dream of mine since i was a kid). I am now in a muscle car club, and compete in shows. keep in mind that nothing is impossible The survival age for a child born these days is 40. There are so many new treatments since i was a kid, and kids these days will benefit from all the knowledge about cf these days, where years ago there was very little. Cf IS unpredictable, but so is life in general.
We had our second test today and it was also a positve. Apparently our State started testing for cf after our first child was born. So our second child appears clear. I am starting to feel better (less like my world is falling apart) and starting to think how to plan for this.
I have insurance through my company, is most of the treatment and medicine usually covered by insurance?
Is there much that is considered experimental therefore not covered?
Once again, I cant tell you how much all of your feedback has meant to me.
I have insurance through my company, is most of the treatment and medicine usually covered by insurance?
Is there much that is considered experimental therefore not covered?
Once again, I cant tell you how much all of your feedback has meant to me.
Mockingbird
New member
Any insurance company can be iffy, as all insurance companies are always looking to weasel out of actually paying anything. =-) But every CF center I've been to has always been good about dealing with insurance companies; if nothing else, the doctor might write a nasty little letter telling them to stop being stupid. =-)
The cost of CF meds takes a little getting used to. Pulmazyme and Tobi easily cost more than $1,000 a month each. The cost of the vest runs over $15,000. Typical two week hospital IV stays (called "tune-ups") add up quickly too. We had a difficult time at first because our deductable was 30%. So, for example, our monthly share of Pulmazyme was costing us $400 out of pocket.
Now we have switched our prescription plan to be an even $40 deductable. The good news if you have a high deductable is that the drug companies offer endowment programs to help you cover costs (It's the LEAST they can do). Tobi has the Tobi Foundation and Genentech offers a similar program for Pulmazyme. The social worker at your CF clinic should be able to help you with all of this.
The most important thing I can tell you is to always make sure you are covered by insurance and NEVER let the insurance lapse. You may have trouble regaining any insurance coverage if that happens.
Maria (Sami's mom)
Now we have switched our prescription plan to be an even $40 deductable. The good news if you have a high deductable is that the drug companies offer endowment programs to help you cover costs (It's the LEAST they can do). Tobi has the Tobi Foundation and Genentech offers a similar program for Pulmazyme. The social worker at your CF clinic should be able to help you with all of this.
The most important thing I can tell you is to always make sure you are covered by insurance and NEVER let the insurance lapse. You may have trouble regaining any insurance coverage if that happens.
Maria (Sami's mom)