quick question

[allie1]

My daughter will be 3 in October and she was just diagnosed with CF in June. We had her signed up to start preschool this fall but her doctor suggested we hold off for another year.

Anyway, I want to get her signed up for something this year and her PT suggested she do sports that are good for upper body strength. I'm thinking gymnastics would be perfect but I know it can be strenuous too. Does anyone have any personal experience with their children doing gymnastics or themselves and was it a positive or negative one? I want to make sure I am doing the right thing for her but I don't want to wear out her little body either. Thanks

Amy

 

[AbsintheSorrow]

Can I ask why your doctor suggested putting off preschool for another year??

 

[anonymous]

It would depend on why the dr. suggested holding off on preschool for another year. If it is because of the germ pool being too close to a pretty serious illness at diagnosis and wanting her to regain her health, then you might want to concentrate on something outside for the fall or maybe roller skating lessons at an indoor rink for preschoolers (something with not a lot of physical contact. I am not sure why else the dr. would tell you to hold off on preschool? Was it the cf dr. or the pediatric dr.? Preschool vs. any other indoor age appropriate activity is pretty similare in regards to exposure. Which is not nec. a bad thing if they are not in fragile health. My son was dx. at 18 mos. and his health took a good year to get back on track due to the degree of infection at the time of dx. He started preschool at three and his health has been pretty good. He is now six and will be starting full day first grade in a week.
Jo Ann - mom of 6yr old with cf and 9yr old w/ out cf - both boys

 

[allie1]

Since she was only diagnosed in June and she was going to be starting preschool this month, her CF doctor wanted her to get in a good routine of washing her hands by herself and not relying on a teacher to do it. Also, I think the doctor was thinking of me a little too b/c I have a newborn at home so I think she wanted me to see what our new routine (PT and enzymes) was going to be like before we started something new. I was thinking that with gymnastics, at least I would get to stay and watch the class and then make sure Allie washed her hands right afterwards. We're lucky b/c right now it's only digestive problems and no lung issues yet.

Amy

 

[anonymous]

Hey Amy, my daughter as well as yours has only had digestive problems no chest issues at all. She is four will be five in December. Anyway, she has always been in gymnastics and it is wonderful for her. I must be a bad parent because I am the worst hand washer and boy I don't think I"m careful about my daughters hand washing. Don't get me wrong, she goes to the washroom she washes her hands, but as far as school and gym and other activities, I try not to baby her too much. I think it has helped her amune system seeing as she has never even had the flu in all her 4.5 years. Mind you, I always have baby wipes in the car and she frequently washes her face and stuff just for moms sake more then anything. I think the more you shelter the more problems will arise. She started school when she was only three, turned four in December but she was still the youngest and that was really scary. She is so smart ( don't know where she gets that from) but exposer now will pay off. She will get used to infections and fight them off better I'm sure, my daughter is living proof. God help me if I'm wrong, but I truly think I'm teaching her right.

 

[AbsintheSorrow]

I agree with the last poster. She needs to build up an immune system to colds and regular stuff. In the end, it'll be better for her.

 

[anonymous]

My daughter just turned 4 and has been in gymnastics programs since she was a year old....diagnosed at 2 months. She will also be starting preschool next week . Being that your daughter was just diagnosed it may be best for you to keep her out of school...not for germs but just to get used to the idea. The first year after diagnosis is the hardest to deal with but at least now you can treat her and she will feel so much better. I agree that it is better to wait until you are both more comfortable with her condition before sending her out on her own. There are great books available for this age that will help her understand her condition in her own terms. Speak to your CF team or let me know and I can send you a list of titles.
Our daughter does gymnastics and ballet, which have both been great experiences for her, and she will continue them into the school year. We have had bad experiences with swimming pools for infections, especially indoor pools, so I personally do not recommend them....although others may disagree.
Your daughter will let you know what she can and can't do. Let her try what she wants, gymnastics or otherwise, and let her be her own person. We are fortunate that ours is asking for these things but it is not fair to force a child to do sports if they do not enjoy it.

Heather

 

[anonymous]

Heather,

What kinds of problems have you had with swimming pools, if you don't mind me asking? I was just about to sign my 4 year old up for swimming lessons this fall (in an indoor pool). He usually swims in the summer and it's almost always an outdoor pool. Maybe I need to do some more research. Thanks for any input! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[AbsintheSorrow]

I'm not sure I want to tell you this, but you'll find out from someone... swimming pools have been known to more paranoid parents to be a huge breeding ground for pseudomonas. And I'm sure this is true, but as I've said thousands of times.... Pseudomonas is everywhere. So if the kid wants to swim... let him/her swim!

 

[Liza]

Hi, my daughter now 17 was diagnosed at the age of 3 yrs 2months, just one week before our youngest was born. The adjustment to CF to me was a difficult one. All the things you need to learn etc. I can see where your CF doctor might suggest waiting another year for pre-school. Just seven weeks after diagnosis my husband was deployed so I packed up and went home to my parents. I put my daughter in ballet and she loved it. Mingling with other kids boosts their immune system. At the time of diagnosis she had mainly gastro problems too. She already knew to wash her hands after using the bathroom and before eating. 6 months later when we returned home she continued ballet, took swimming lessons, and later gymnastics. The important thing is physical activity. Swimming is great because it not only promotes upper body strength but strengthens the lungs when learning to swim under water. I say get her involved early in physical activity and keep her interested, whether it be organized or simply bouncing on a backyard trampoline or bike riding. If you find that gymnastics is too much for her you can always drop it but most likely, at her age, the 45 minutes or hour is going to pass quickly and she's going to have a blast. Don't keep her from things just because it might be too strenuous, let her at least try. My youngest now 14, also has CF, is a freshman cheerleader this year, has practice for an hour four days a week and has an hour long tumbling class one night a week. Both my girls have found activity that involves bouncing to be great PT. This is just our experience, if they can do it, let them.

Liza
(mom of 2 teen girls w/CF)

 

[allie1]

Hi Liza,

Thank you for your post. I'm very excited about getting Allie signed up for gymnastics and we'll just see what happens. I definitely don't want to be too paranoid about things but it's hard not to worry all the time. She was diagnosed the day after my new daughter was born(which was 2 months ago) so my situation sounds a little like yours. Luckily though, my newborn tested negative.

Amy

 

[anonymous]

The reason we stopped indoor swimming lessons was because everytime she goes to an indoor pool she gets bad ear infections, sinus infections or a chest cold. Parents continually put their kids in the pool when they are sick and indoor pools tend to be kept warm. Bacteria breeds in these environments and Ashley seems particularly suseptible to the pool she goes to. She still goes to lessons in the summer at an outdoor pool, but still got a bad double ear infection this summer and had to stop for 2 weeks.

We did not take her out because of pseudomonas. I am not a paranoid parent about it because I know she can get it from sitting in a bath. Ashley continues to do outdoor swimming lessons, because I think it is important the she know how to swim.

I have also heard that some indoor pools are cleaner than others. This is hard to keep track of but I got some good tips from the lifeguards at our local pool. If we put her in Winter lessons in the future it will be at a different pool which is supposed to be better maintained.

I hope this answers your question. I am in no way trying to deter parents from putting kids in swimming lessons because I think they are great. I actually tried 4 winters in a row but each time she is removed from the program. It may just be the pool we attended and you may have a positive experience, but I just wanted parents to be aware.

Heather

 

[anonymous]

Thanks, Heather. Good input. I feel pretty good about the pool I signed my kids up for, so hopefully we won't have too many problems. I'm sure it helps to do a little research before hand to see if the pool is properly chlorinated and kept up. It's such good exercise for him and he really enjoys it so we'll try to watch things closely. Thanks!

Carey

 

[anonymous]

My 14 yr. old CF son does great with swimming AS LONG as it's a pool that I know is clean. We have
a pool( live in Phoenix) and use a salt system and believe it is even good for him in that it also treats the
sinus areas with salt! We have had problems in the past when he swam one summer in relatives pond
back east......................................... before he was diagnoised he got bad infections from that.................
So if there is a chance to use a salt system in a pool as apposed to clorine it's great.
michelle, mother of 3, 1... 14 yr. old son w/cf<img src="i/expressions/rose.gif" border="0">

 

[AbsintheSorrow]

Just to clarify, Heather I wasn't calling you a paranoid parent. I was using the term fairly generally. And in response to Carey's question why you took her out of swimming lessons.

I really don't want to come off as rude or inappropriate, but I positively hate when parents avoid letting their kids do things they want because there's a chance they could get sicker. I understand taking little steps, but Carey has come off to me as the type that would avoid swimming lessons altogether because of the chance of culturing pseudomonas. Granted, I don't know her from Joe Shmo down the street, but that's the feeling I get from her. I could be totally wrong, and I know that. I just don't want to go unheard.

I see kids with CF on this site all the time, or parents that have young kids with CF that are being smothered. I hate the idea that parents would avoid altogether swimming, or putting kids in public school or whatever because they're sick. The more you exclude them, the more they will feel like a freak. And there's absolutely no reason for that. I just try to make it as obvious to parents as possible that.... Yes, your child is sick, and will likely die before his/her time. But the more you make their life difficult, the more you're taking away from them. It's hard enough growing up sick and having a short life riddled with medications and surgeries and hospital stays and treatments and therapies. All I'm saying is, AFTER all that crap, try to let the kid grow up as "normal" as possible. Their life is already going to be more difficult than anyone would wish on them... Just keep in mind you want to let the kids still be kids. I didn't intend on ranting and raving so long when I started this message... but I guess I have by now.

And that's why I answered the question that way.... not because of you, Heather.

 

[anonymous]

Emily,
I sometimes don't come across the way I want to. I was more trying to emphasize that I wasn't a paranoid parent and that I don't think people should be. I totally agree with your outlook and did not take it personally. As you could see from my email, even though I have had bad experiences I still tried it 4 winters in a row...I can be stubborn that way <img src="i/expressions/face-icon-small-happy.gif" border="0">

Heather

 

[HollyCatheryn]

I was in tumbling as a little kid and then went into gymnastics when I was school age. I think it was very good for me. Anything that gets her active and breathing heavy will help keep her lungs strong and clear of junk. If you get into it and feel she is too strained or that she is prone to injury, don't give up on athletics, just look at a different kind. For older kids, swimming is really good. Swimmers regularly have the highest pulmonary functions among athletes and it is easy on the joints, while toning the entire body. I personally had great experience with swimming and gymnastics. When I wa a swimmer, my PFT's (pulmonary function tests) went from a norm of 110% which is really good, to 145-149% which is unheard of. Good luck with your daughter. There are so many wonderful possibilities for kids and adults with CF now - it's a great time to be alive.

 

[anonymous]

Hi Emily,

I don't know you from Jo Schmo down the street either, but you come across having some major anger issues. I have never said anything personally offensive to you and I am my own kid's mom who knows what is best for him. In my son's short 4 years of life, he has been involved in more activities and socialization that I have room to write. So, get off my back, honey. It's getting really old!

Carey

 

[anonymous]

Amen, Carey!!! No offense, Emily. But someone has needed to say that to you for a loooooong time. We know what's best for our kids, so don't be so quick to judge or so quick to praise yourself. Enough is enough. Carey, you are doing a great job. Someday, if Emily is a parent, she'll see that being one can be a little harder than it looks. Keep up the good work.

Julie

 

[anonymous]

My son has been involved with swimming for a long time and I've always just made sure I felt good about the cleanliness of the pool. I'd be careful.

Tyler