Teens, what to expect for the years ahead?

[FalseDisposition]

My son is 2 with cystic fibrosis. So far things have been pretty good health-wise. He did spend the first 4 months in and out of the hospital but he hasn't been in since. I just want to know what to expect for the years ahead. Thank you!

 

[ZCarr]

Do as much research as you can. Everyone's case is unique but I developed quite late. I turned 21 only three months ago and I'm only now under-going all the late-stage development both mentally and physically that one would experience in high school. I neglected my health for awhile though, so I'm sure that hampered my growth.

Do your best to take care of your child but also give them some independence and trust. If you baby them too long then they won't be able to handle things such as college or post high school life. I'm doing it now but my health has reached such a critical point that I'm sure I've impacted my life negatively.

I've done a LOT of good though and the disease has by no means hampered my faith nor my talents and brain development. It's more behavior things.

 

[msosnow]

Well, my daughter just turned 12, she was diagnosed at 2, so the last 10 years... all just an experience, everyone is diffrent, in those first 4 years it took some time to get all the medications right, and quite a few hospital stays, with IV antibiotics and now at 12 she knows when she is not feeling good, we up the treatments and I really try to get her on meds as soon as I here that cough, or runny nose. the last six years are good, she usually goes once a year sometimes 2 times a year to get the IV antibiotics, oral ones dont work so well anymore . My advice do what the Dr. orders medication wise, and keep a positive attitude, lots of patience, and lots of calls to dr. and nurses with questions cause there is always questions. Best thing I do is take it a day at a time and make the most of all those visits and hospital stays!
Michelle

 

[LittleLab4CF]

The children of parents who don't fear death will learn to love life.LL

 

[aspiringactress]

I'm thirteen years old, almost 14. Here's my view on it.
Your son will most likely be going to the doctors every three months to do a pulmonary function test (pft). These tests don't hurt, but they are extremely tiring for cf patients because it requires taking very big breaths and us cf kids don't normally take deep breaths because its hard for us.

He will also wonder things like "why me?" And "life is too hard to deal with.", so make sure you let him know he can talk to you whenever he needs to.

For the first little while, expect to go to the hospital for about two weeks at a time quite often. This is because he is young and doesn't know how to keep himself healthy on his own. Just be sure to teach him that if he takes good care of himself, he doesn't have to go in as often.

He will have to take many pills each day, so teaching him how to swallow them will make it easier for you and him.

Every cf child has 2 "mutations", or characteristics, that define how they will be treated in life. Almost every single child has different mutations that are deadly when they come in contact with other cf mutations (so keep your son away from other children with cf).

You have to make sure he eats A LOT and takes pancreatic enzymes with everything because cf pancreas' don't work the way they should and you don't digest properly without the enzymes. I am about 5' 1". I would be taller, around 5' 4", but I don't take my enzymes like I should. I'm supposed to weigh about 100 lbs, and I barely keep 87 lbs on me. The enzymes also help you from getting constipation. The give you this awful IV fluid called "golytely", which makes you poop. Well, let me just tell you, that is a misnomer.

I would love to give you a kids point of view whenever you need it, so email me!

megan.ashley.scott@gmail.com

 

[beautifulsoul]

You have so much time ahead of you considering your son is only 2. I wouldn't worry about anything right now if everything is working out smoothly. My parents raised me to live as close as I possibly could to others my age. I took dance classes for several years, I played soccer one year, I had slumber parties, went out with friends, etc...I do agree with littlelab4CF statement.

 

[nmw0615]

My parents raised me almost identically to how they raised my non-CF sister. The only differences were they made me take pills and do my therapy treatments. And even then, if I was having a sleepover with my friends, they let me have a night off from the vest treatments. I played soccer and volleyball until I was in high school. They never once treated me like I had a deadly disease. I didn't even realize CF was considered a disability until I was in my late teens. My parents always told me "You have CF, CF does not have you." I still listen to that advice to that day.

 

[DmT145]

These tests don't hurt, but they are extremely tiring for cf patients because it requires taking very big breaths and us cf kids don't normally take deep breaths because its hard for us.

Not necessarily

For the first little while, expect to go to the hospital for about two weeks at a time quite often. This is because he is young and doesn't know how to keep himself healthy on his own. Just be sure to teach him that if he takes good care of himself, he doesn't have to go in as often.

Also, not necessarily true.

Almost every single child has different mutations that are deadly when they come in contact with other cf mutations (so keep your son away from other children with cf).

No. People with CF often are carriers for dangerous bacteria and that is the reason for isolation from other people with CF. It has nothing to do with mutations.

. The give you this awful IV fluid called "golytely", which makes you poop. Well, let me just tell you, that is a misnomer.

Nope. Golytely is not an IV fluid, it's an oral fluid that pulls water into the intestines to loosen impacted stool.

 

[Emer76]

Each of us are different. Even with patients that have the same mutations our symptoms can be different. I know you worry, I myself I'm a mother of two . I'm 37, DD508, diagnosed at 3 months old(failure to thrive) ,one hospitalization during that first year. Not hospitalized again until I was nineteen although I had several threats by my doc. I think it is important to treat your child as normal as possible. I have three older brothers, (non cf) I never felt like I was treated differently from them. I was made to do chores, etc. just as they were and taught to be responsible especially for my treatments when I was old enough,percursor back then. ( unless I was sick and it was twice a day then and my parents would to it by hand. Got up at 5:30 every morning to do treatment,of course my mom was always making sure I was awake an didn't fall back to sleep as teenagers do. I didn't rebel against my treatments as some teenagers do and I think that had to do with my parents placing importance on taking care of myself. treatments first thing after waking up no exceptions. Of course I did spend the night with friends I just had to come by nine or ten to do cpt. Teach responsibility.

 

[Casey_Wilson]

I just turned twelve I was just diagnosed in 2010 but I have been in and out of the hospital so keep doing research and in the years to come they might find a cure and watch your Childs health.

 

[iefisherman]

As it has been said earlier, every case is different. The only thing you can do is deal with things as them come at you. I had a very normal teenage life, and really didn't feel bad enough for it to hold me back from anything untill my 20's. I'm 30 now, own a house, decent job, and get around fine. Prepare yourself for what could happen but hope for the best. Also let him be a kid, and dont over worry about little things in everyday life. My teenage years were a lot harder mentally than physically. Questions will come up as he gets older, Make sure you are preppared to answer them before he askes so you can help him deal instead of both of you having to deal at the same time. Things will be fine It will all fall into place.

 

[Gentrygirl]

My son has been pretty lucky. He's 16, has only been to the hospital for a broken arm from snowboarding. He stays really active, plays ultimate frisbee, skateboards, swims. His weight tends to be a challenge, at this point its mostly challenging because he's a teenager and keeps growing taller. Each time we catch up on weight, he grows again and then his proportions throw him back in to a yellow zone (cautionary for hospital stay). He keeps avoiding it, though. His lung function stays good, I think both because of his weight and exercise. Milk gets half and half added to it. Butter on everything I can add it to for him. Especially in the summer time, he has to really stay on top of keeping his salt intake up. When he loses the salt through exercise and doesn't replace it, he loses his appetite. It's his "normal", and if you can make it normal for everyone around him, then it helps the treatment routine. He's got a number of friends that are so used to sleepovers with the Vest, it's just a normal thing to them to. It even goes over to his friends houses with him, and even their parents think its normal. When someone new comes in to that circle, he lets them try it on. Once they feel its like massage, now it seems normal to them. I think having the people in his life that are close to him comfortable with it helps him not feel awkward about doing the treatments, so he is more likely to do it. He's gotten really sly about taking his pills in front of people without them ever knowing. I think he also doesn't know he has a "disability". I know not everyone has the same experience, and you won't know what's ahead of you until you are there. We feel very lucky that he's as healthy as he is. Important not to take that for granted- once you stop being diligent about treatment, decline can set in. Best of luck to you!

 

[Jonas Breßler]

Hey,

i am 21 years old and I am sutdying in a german university to become a history and english teacher. I grew up knowing that i have cf. But i was never treated different. I was allowed to play outside, go swiming and sailing and so on like my two brothers. I even walked 800 km through spain. I understand that you want to protect your baby, but if you want your child to enjoy life, you should never hold him back. I can say that i could die tomorrow and i would go willingly because i had a good life.
I still feel good with my 21 years, although i was better a few years ago. But my health is steadily declining. Make your kids live a perfect one. My parents sent me to vacations as often as i could so i could see the world before i have to die. Sounds a bit depressing but you never know... A boy from my hospital died of cf with 21 years..
And never treat your kid as if he is different or even handicapped!!!

best wishes,

jonas