Treatment ???

[babyjaden2004]

Just wondering how ya get the little ones to sit while doing the neb treatments. A friend suggested her car seat (she is 16months) And that keeps her in one place but she is still not happy. We have tried Barney, who she loves during her CPT. We have tried all kinds of things. She usually is pretty calm in the eves but during the day it is so frustrating.

Thanks

 

[anonymous]

Sydney sat in her infant swing for nebs until she was almost 2 years old. She hasn't done a neb treatment for months now but she will do them fine just sitting on the bed, couch or floor as long as there is a video on. That swing proved to be one of the best "new baby" purchases that we made - go figure!

HTH,
Kelli (mom of Sydney 2.5 wcf)

 

[reillybug]

Reilly watches Elmo, who is her ABSOLUTE favorite. It used to be Baby Einstein, which she still really likes. If she tries to get down and not finish her treatment, Elmo gets turned off until she is willing to complete the treatment, which is usually right away. If she does the entire treatment without complaint, she is allowed to watch the rest of the movie.

 

[anonymous]

We use the pari e-Flow for neb treatments. Our nebs take between 2 and 4 minutes depending upon the amount of solution. It has helped alot since my son does not want to stay still for too long.

Tom (17 month old son w/cf)

 

[anonymous]

Is e-flow available in the states yet?

We have a big fluffy pillow with a spongebob or blues clues pillow case. Put DS on the end of the bed so he can see the tv and I hold the nebulizer while DH beats him. We ask him what he wants to watch -- he has three zillion videos and dee-dee-dees. Sometimes it's Nikelodeon on TV, Elmo, Barney, Sponge Bob, Thomas the Tank Engine. Right now it's Frosty. Whatever he wants to watch to make him happy. Before he was interested in TV we'd sing old McDonald, sing silly songs about him.

Can you do CPT while she's sleeping. Say getting ready for an afternoon nap or during a nap. DS sleeps thru his early morning one. The afternoon one is tough 'cuz he wants to go play.

 

[babyjaden2004]

Maybe I should try a different dvd, since she is used to Barney for her CPT. I was thinking about getting her swing back out and putting her in and trying that.
Thanks for the advice and I guess we'll just keep trying different things. She usually falls asleep at night so I have no problems there its the morning she is wild and ready, LOL

 

[anonymous]

When I was little, I used to have a plastic mask that would strap around my head with an elastic band (in stead of a mouth piece for my nebs). This way, I could walk around, stand up, whatever and still got the meds. I probably didn't get as much of the meds with the mask because it had two hole in it for when I exhaled, but I still got most of it, just from breathing regularly. I still have pics of me being about 2 with this silly mask strapped to my face. This was also almost 20 years ago, so I'm not even sure if they still make the masks. It may be worth looking into though. Good luck!

-Aimee/23/Colorado

 

[anonymous]

The young kids still use the mask stapped to their heads. It is actually a fish mask that they call "Bubbles".

 

[anonymous]

My daughter (3) does her nebs in front of the tv or we'll read her books. Last night she found her big bro's Leap Pad( a computerized book) and was able to play with that while holding her neb in her other hand. We make up stories when she's bored of other stuff. She's even had "friends" come over and sit next to her while doing her treeatments. I think it's really important to tell your child what a great job they are doing at their treatments and what a big girl/boy they are for doing them. It makes them feel proud and good about themselves and I found it makes my daughter want to "show off" what a big kid she is doing all her treatments. I guess all the positive reinforcement you can give to make the nebs a normal part of your day so it's not a struggle.

Rebecca(mom to sammy no 7CF and maggie 3 with CF)

 

[babyjaden2004]

Jaden refuses the mask and will pull it off and then she screams cause she gets it stuck in her hair. I guess with her being smaller it isn't as easy to make her understand. Last night we had on the advertisment channel and she loved it! I think it was the music playing maybe. We did our last one last night so we are done till we get out next culture on the 9th of Jan so we'll see. Do they just put them on Tobi every 4 weeks no matter what or only if they culture for Pseudo? That is why we were doing them she cultured positive for it. I have tons of question for her CF doctor next time around.

 

[folione]

Mostly a reiteration of what you've heard and maybe a comment that it does get easier as time goes on.
Once he started being interested in shows like baby einstein and the like, we've let our son (now age 2 1/2) sit and watch videos on demand - having one or more DVDs and/or videos loaded and ready to go before starting the nebulizer makes a big difference. A while back he decided he likes to eat altoids (mints) so we let him eat Altoids only as a reward for using the nebulizer.
When he was much younger and not interested in shows, we used the mask (attached to a PariLC+ neb unit) when he was asleep if he was being difficult but usually the method was for one parent to hold him in the rocker and keep him content by reading/singing/patting while the other handled the gear. For the first few months of using a nebulizer he was frightened at the sound of the compressor coming on so we positioned the rocker next to a door and put the compressor on the other side of the door. At one point early on his Dr. provided a pacifier-nebulizer; we never ended up using it but it was a pacifier attached to the business end of a nebulizer that emitted the vapours via holes that aimed it up the baby's nose; interesting contraption. We also did not let ourselves get into too big a battle about it when he was in a really uncooperative mood and just tried later or when he was asleep. He's now almost able and willing to take care of it himself even when it's 3 meds twice a day.

 

[julie]

Not a parent here (yet) but just a thought, have you tried getting a similar looking mask and putting it on your face before or during Jaden's treatments? Sometimes kids seem to be responsive to that kind of stuff. I can grab an oxygen mask from work and mail it to you if you like (division902@hotmail.com). Or if Jaden really looks up to Zach, maybe Zach can help out and wear a mask too, or put a neb tube in his mouth? Just a thought...

 

[anonymous]

DS was put on Tobi when he cultured Pseudamonas at 3 months. They told us because it's the nonmucoid type and can be erradicated at such a young age that they like to keep the very young ones on Tobi for at least a year from the first diagnosis. Guess it depends upon the doctor -- some like to keep them on Tobi over the winter months, too.

DS doesn't like the mask either. A couple of times I've gotten out the tobi mouth piece and he's used that. He laughs when I plug his nose or he'll grab the noseplug himself and use it.

 

[babyjaden2004]

Julie thanks so much for the offer but I actually have a extra mask that came with the neb. Our clinic send me a whole different set up for it. Maybe I can try that. I never thought to do that. Zack has been a big help but he isn't home during the morning treatments. I guess as she gets old it will get easier. In the summer might be nice to be able to go outside to them, can you do that? Or even just change rooms to do them in.
Thanks for all the relplies. I have hunted high and low for a place that was normal. There are some boards that are just to negative for me. You all seem real if ya know what I mean. Thanks again. For now we are enjoing no treatments till her next appt. CPTs I actually like cause she laughs and tries to do them to me and usually falls asleep in the end.

 

[HD]

Ian started nebs when he was 3? I think or 4? it all kind of runs together!!! He always hated the mask so until he could hold it himself we had to have him sit on our laps. It took awile for him to get used to, he screamed alot at first, but I figured, hey he was probably opening his airways more that way! Now he is 5 and holds it himself

 

[julie]

It's funny you ask about going outside because mark will hunt for an extension cord to go outside and sunbathe during his treatments <img src="i/expressions/face-icon-small-smile.gif" border="0">. It's perfectly safe to do outside. Sometimes we'll be up really late and so he'll want to take the nebulizer up to bed-so we do. Sometimes a change of scenery. Maybe on the weekend nebulizer times Zach could help out.

Glad you like this board, I too am a member and have been on a few others and still occasionally post but this is "home" and my "family" to me. It is really nice to have a place to come, and were there is such a diverse group, there are parents, CFers themselves, lovers, husbands, wives, friends, even teachers of CFers that frequent this site. I think it's really nice to hear about the situations of people older, younger and the same age as Mark and I.

Take care and I hope the treatments get better!!

 

[anonymous]

Baby Einstein was the BEST for us! My daughter use to fight us like you can't believe and one day I decided to try Baby Einstein....the minute I put it in, she stopped fighting (literally stopped at the site of BE) and her eyes were glued to the TV....it worked until she was 2 1/2. Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0"> Let us know!

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>When I was little, I used to have a plastic mask that would strap around my head with an elastic band (in stead of a mouth piece for my nebs). This way, I could walk around, stand up, whatever and still got the meds. I probably didn't get as much of the meds with the mask because it had two hole in it for when I exhaled, but I still got most of it, just from breathing regularly. I still have pics of me being about 2 with this silly mask strapped to my face. This was also almost 20 years ago, so I'm not even sure if they still make the masks. It may be worth looking into though. Good luck!



-Aimee/23/Colorado<hr></blockquote>

Aimee - completely off topic, but what part of Colorado are you from? I grew up in Wheat Ridge...yes, I was a Wheat Ridge Farmer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[anonymous]

That is a good question. Hailey has been doing nebs since she was 6 months. Usually she screams for most of it. Last month the dr gave us inhalers instead. So now she only scream for 15 seconds compared to 15 min. I know there are certain meds that have to be done with a neb. I guess I will have to figure out something when that time comes, but it is definately easier to use an inhaler with a spacer and mask.

 

[anonymous]

We went thru a phase around the same age -- DS didn't have the attention span to watch tv or dvds, didn't want to be entertained by us -- he wanted to go play. Since he turned two he's much much better. Does get if we pick something on tv for him 'cuz we're oh so tired of Thomas the Tank Enginer, but it's shortlived. We let him watch what he wants and he settles down. Only problem is if he wants a snack while doing cpt. In toddler land a few minutes is an eternity.

And if he's throwing a tantrum, not because of the "beatment" as he calls it, but because I've put Danny Phantom on or Scooby Doo -- the yelling I figure is good for his lungs!