We are relatively new to this site, but I was hoping someone could share experiences and opinions. Every year we go to the mnts for Memorial Day weekend. There is no running water or electricity and the cabin is not the cleanist place in the world (critters...). We assumed we wouyld have to give up this trip once we found our baby had cf. As it gets closer we are trying to think if there is a way to make this happen. I can use the opti chamber instead of the nebulizer and buy the expensive premixed bottles (so i don't have to wash anything) but how do I handle the rest? Should we give up the thought?
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camping?
- Thread starter anonymous
- Start date
Ditto the last poster, go and enjoy yourselves. Take some bottled water (some of those big gallon jugs or even a bit bigger with those water spout things), you can get battery operated nebulizers-if you are interested I can look around for a link-let me know. Other than changing that, nothing else should really change. My husband was diagnosed at 18 months and they were camping in a tent, in cabins, spending evenings at the lake fishing-long before they knew he had CF and long after as well. It's one of those things he remembers from his childhood and just relishes the memories-he can't wait till we have kids and he can take them out. Depending on the age of your child, you may need a little allergy medicine or something but they should be ok.
Don't let the CF change the way you live your life or the way you let the child live their life. I know that is much easier said than done, but it will get easier as the child gets older.
Have a blast and tell us how the vacation went.
Julie (wife to Mark 24 w/CF)
Don't let the CF change the way you live your life or the way you let the child live their life. I know that is much easier said than done, but it will get easier as the child gets older.
Have a blast and tell us how the vacation went.
Julie (wife to Mark 24 w/CF)
Hi, butting in here with a question: What about camp fires? Are they okay for CFer's to be around??
PS I took a vacation last year and bought a bunch of cheapo Gerber bottles (6=$3) so I could just throw them away rather than worrying about cleaning them....worked very well.
PS I took a vacation last year and bought a bunch of cheapo Gerber bottles (6=$3) so I could just throw them away rather than worrying about cleaning them....worked very well.
I think campfires is a try it and see thing. My husband says as for him, they don't bother him one bit-but he does stay away when they start to go out and it is just smoke-just as a personal precaution. I can imagine it would bother some who are more sensitive to those sorts of things. I would give it a try and see how your child reacts, espeically if they are younger and can't communicate it yet. Those bottles sound like an ingenius idea.
Julie
Julie
When you say "the cabin is not the cleanest place in the world (critters...)" , do you mean that you find animal droppings in it? If so, I would have concerns about adults staying there, much less a baby with cf. Healthy adults have been known to develop life-threatening illnesses after staying in cabins that had been infested with rodents . I would especially check with the county health deparment to find out if there has been any hantavirus reported in either people or animals in the area.
Bambi, mom of Jordan, 16 w cf
Bambi, mom of Jordan, 16 w cf
I go camping/conoeing every year. I haven't had any problems. I go in the tent do my treatments. Go to the campfire etc.... It's so much fun. We have a portable power unit. You know the kind that jumps the car battery. It has a inverter plug in it. I use that for power. I also have a power inverter(paid approx $70.00) that plugs into the car (paid like $30.00 at Meijer). So they work great. Hope this helps. Becky in Mich
We let our son by the campfire this weekend for the first time and were just cautious to which way the smoke was going versus where he was standing. We thought about getting some little masks for him, but the fire didn't seem to bother him one bit. When I was getting him ready for bed he said "Mommy, that campfire was so much fun". It was the first time we did it with him. We usually wait until he is in bed. My mother in law questioned whether or not I should have let him be out there, but hearing him say it was fun...we'll include him from now on. <img src="i/expressions/heart.gif" border="0">
That's wonderful fred! My husband Mark and I are planning a camping trip for this summer. WE got a little portable nebulizer that works off of a rechargable battery source (not actual batteries) and we are going to resort back to manual chest PT for the duration of the camping trip just because lugging along the vest is a little much for camping (for us), we've got a cooler to keep the TOBI and Pulmozyme in and were going to do some swimming so that ought to keep him in "good shape". It's ironic how the campfire doesn't bother mark (even the smoke afterwards) but cigaretts and some strong parfumes drive him crazy. He really enjoys the outdoors, fresh air and says he feels like he can breathe easier out in the "wild" (as he calls it). It is good to hear that you guys are considering venturing out, it really is a wonderful experience-even with the CF factor.
Just out of curiosity, how old is your little one?
Have fun this July!
Julie (wife to Mark 24 w/cf)
Just out of curiosity, how old is your little one?
Have fun this July!
Julie (wife to Mark 24 w/cf)
Emeraldmirror
New member
You could also look into getting a power converter for your car, it just plugs into your cigarette lighter and you can plugs things in.. i don't know how many volts can go through it but i know they are relativly cheap, you could look into that.
Ashley 21 w/cf
Ashley 21 w/cf
He is 6 months old. I am a big fan of the outdoors and I make sure we get a little bit of fresh air in his lungs every day. Even if it is just 15 minutes! Have you heard of the opti chamber? Does anyone else use it? It is supposed to replace the nebulizer. The albuterol and pulmocort come in an inhaler form and the meds are sprayed into a chamber. We used it for about 5 days but my little guy starting having major stuffy problems (too little to blow his nose-and the nebulizer steam keeps things moist and moving). Our CF center claims that most of their patients use it and it is perfect for traveling. It is only about 6" long. I would think the adults could just used the inhalers...I don't know, we are still new to all of this!
NoDayButToday
New member
I use the Opti-Chamber, but only for my 'puffers', because I still prefer doing a nebulizer for my treatments-- I feel they work better. Plus, Pulmozyme, one of my medications can't be used in the chamber since there is not an inhaler equivalent.
Mark has an "old fashioned" nebulizer that he uses at home, it's stationary and hasn't moved since we moved in. We got the Pari Trek (<a target=new class=ftalternatingbarlinklarge href="http://www.pari.com/products/pariTREK.html)">http://www.pari.com/products/pariTREK.html)</a> so we could go camping with it, and he is going to alaska next week and I told him he was only allowed to go if he took it. It weigh's maybe 5lbs, probably less. I was reading through the instructional pamphlet and it showed all the attachments that can be used for infants, toddlers, young children... We are really happy with this product and everyone else I have talked to is as well. We bought it for the sole purpose of carting it around with us for trips. Maybe that might be something beneficial? I've never seen a neb used on a baby, but I can imagine it can be quite akward, both for the infant and the parent trying to administer it. But I do hear that it gets easier as the child gets use to it and it becomes much less of a struggle. Your "item" does sound convenient as they come in inhaler forms. We've learned that it's a trial and error process for waht works for Mark. Some things that people give great reviews about- he absolutely hates, and other things that others are so so about-he really likes. You'll get it figured out as you go...
Take care and I wish you the best this summer, go on all those trips you planned.
Julie
Take care and I wish you the best this summer, go on all those trips you planned.
Julie
Water - go to your local camping store, and pick up a 5 gallon water bottle. This way, you know the water is clean and safe.
Critters, not good. Maybe you should look into having someone up to clean the cabin before you use it. Animal droppings are unhealthy for everyone, healthy or CF... and I have to imagine it's worse for babies.
Nebulizer. We power Jeremy's either with a power inverter connected to the car (350 watts will power the neb machine, 700 watts will power the vest), or using a portable power supply. The power supply works great (it won't do the vest/neb at the same time, so we run one off the car, the other off the power supply), and we can get about two vest treatments before it needs recharging (which can be done from the car). We're also thinking about getting a Pari Trek for camping - especially since we want to go backpacking.
350 watt power inverter <a target=new class=ftalternatingbarlinklarge href="http://www.walmart.com/catalog/product.gsp?product_id=1818511
">http://www.walmart.com/catalog/product.gsp?product_id=1818511
</a>700 watt power inverter <a target=new class=ftalternatingbarlinklarge href="http://www.walmart.com/catalog/product.gsp?product_id=1818512
">http://www.walmart.com/catalog/product.gsp?product_id=1818512
</a>Power Supply <a target=new class=ftalternatingbarlinklarge href="http://www.campingworld.com/browse/skus/index.cfm?skunum=26434&src=SRQB
">http://www.campingworld.com/browse/skus/index.cfm?skunum=26434&src=SRQB
</a>Pari Trek <a target=new class=ftalternatingbarlinklarge href="http://www.pari.com/products/pariTREK.html
">http://www.pari.com/products/pariTREK.html
</a>
We're going on a sailing trip this weekend, so we'll be bringing the power supply with us to do the neb, and I'll do manual PT instead of the vest.
Cleaning neb parts. We just boil some water on the camping stove, and pour it over the neb parts.
Campfires. Jeremy says he feels a bit "tighter" in the chest after we have campfires, and he's usually more congested the next day. Try to stay away from the smoke.
Critters, not good. Maybe you should look into having someone up to clean the cabin before you use it. Animal droppings are unhealthy for everyone, healthy or CF... and I have to imagine it's worse for babies.
Nebulizer. We power Jeremy's either with a power inverter connected to the car (350 watts will power the neb machine, 700 watts will power the vest), or using a portable power supply. The power supply works great (it won't do the vest/neb at the same time, so we run one off the car, the other off the power supply), and we can get about two vest treatments before it needs recharging (which can be done from the car). We're also thinking about getting a Pari Trek for camping - especially since we want to go backpacking.
350 watt power inverter <a target=new class=ftalternatingbarlinklarge href="http://www.walmart.com/catalog/product.gsp?product_id=1818511
">http://www.walmart.com/catalog/product.gsp?product_id=1818511
</a>700 watt power inverter <a target=new class=ftalternatingbarlinklarge href="http://www.walmart.com/catalog/product.gsp?product_id=1818512
">http://www.walmart.com/catalog/product.gsp?product_id=1818512
</a>Power Supply <a target=new class=ftalternatingbarlinklarge href="http://www.campingworld.com/browse/skus/index.cfm?skunum=26434&src=SRQB
">http://www.campingworld.com/browse/skus/index.cfm?skunum=26434&src=SRQB
</a>Pari Trek <a target=new class=ftalternatingbarlinklarge href="http://www.pari.com/products/pariTREK.html
">http://www.pari.com/products/pariTREK.html
</a>
We're going on a sailing trip this weekend, so we'll be bringing the power supply with us to do the neb, and I'll do manual PT instead of the vest.
Cleaning neb parts. We just boil some water on the camping stove, and pour it over the neb parts.
Campfires. Jeremy says he feels a bit "tighter" in the chest after we have campfires, and he's usually more congested the next day. Try to stay away from the smoke.