Every case of CF is very very different. There's not really different kinds of CF "strands." I cannot stress this enough, each CF is SO VERY different. There's no real way to tell how "severe" he'll be until you watch him grow. If a doctor tells you he's got "mild" CF, don't listen. I know you'll want to listen and hang onto it, but try to understand this: CF is <u>progressive</u>. If your nephew is "mild" now, it doesn't mean anything for his life. He can be mild for another year and then go straight down hill. Not saying he will. He's young, he'll probably be relatively healthy for a while.
But I HATE when doctors tell new parents (who are still learning!!!) that their kid has a "mild, moderate, or severe" form of CF. Because none of that stays true. It's not like with cancer where there's one type worse than another, and one type is easier than another to beat. You cannot "beat" CF, and there really is no "one type" better or worse than another. CF is what it is, and it is progressive. So do yourself and everyone around you a favor, and ignore anyone who says anything about "mild" CF or anything like it. There's no point hanging onto "nice" words like that because it won't do anyone any good.
Having said that... CF is a lot better now than it was years ago. I was born in 84, before they had even discovered which gene caused CF. I was 5 when they discovered the CF gene in 89. There weren't even any good nebs to go on until I was 9. And despite that, I'm almost 23, with 70% of my lung function. That's pretty d*mn good. Your nephew will be doing even better. He's going to get proper health care right from the beginning (nebs, among other things), and he's going to keep his lung function for a long time. The life expectancy average goes up every year. When I was born, my parents were told not to expect to see me reach 18. I'm now 23, and the average is something like 35. By the time your nephew reaches that 35 mark, I imagine it'll be even higher.
The only piece or two of advice I have for new CF relatives is this: Don't treat the kid like a freak. Not saying you'd go out of your way to do that, but let me enlighten you a bit. There's a certain type of bacteria that CFers get called pseudomonas. It likes to live in wet areas, particularly baths, showers, pools, hot tubs, etc. A lot of new parents, as a result, like to shelter their kids. Don't let them go to pool parties, things like that. That's a useless way to handle it. Pseudomonas is EVERYWHERE. Sorry to have to tell you, but it is. And one way or another, your nephew will more than likely get a strand somewhere down the road. So why deprive him of things that every normal kid likes to do? Anyway, pseudomonas doesn't mean the end of the world. I've had 2 or 3 different strands now for almost 7 years, and I'm still here. I'm a college student, I go out, I have fun. I'm not some useless sick lump. I also have a worse bacteria called MRSA and I'm still functioning and doing well.
The other thing I would advise is not to be "germaphobes." A lot of new parents take this route too. And here's my two cents on that: Again, the kid already has a difficult life, do you really want to make him weirder by home-schooling him simply for the purpose of keeping him away from sick kids? Everyone needs an immune system. EVERYONE, and that includes CFers. I went to nursery school, I went to kindergarten, I went to public school my whole life, and I'm relatively healthy for someone my age born as far back as I was. I played in the back yard with dirt and worms and frogs. I had sleepovers. So not only is it unfair to wrap the kid in a bubble, but it doesn't help anything. He needs to build an immune system, same as any "normal" child.
So really... let him be a kid. Give him the meds he needs, make him see the doctor, but let him be a kid. Let him play with other kids, and get his hands dirty, and go swimming, and make mistakes, and learn lessons like any other kid. In other words: work the CF around his life.... don't work his life around the CF. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Feel free to come back and ask any other questions you like. If you ever want to contact me personally, feel free to do that. You can use the private message feature here (the little head with the talking bubble at the top right corner of every post), or you can email me. Emily65Roses@yahoo.com.
