Nebs and pt on babies/toddlers

M

Mommafirst

Guest
My daughter is almost 11 months old. She's not walking quite yet, but is close. She is crawling all over the place and getting very strong and very strong willed. Treatments are becoming impossible. More medicine winds up in the air than in her lungs, and physio is a constant struggle. She cries, screams, arches her back, pushes me away, moves her head so I can't get and keep the mask on, and pushes my hands away during pt on the front and sides (the back I can get!!). Its a miserable experience 2-3 times a day!! I just don't know what to do! I have tried toddler tv, but she has no interest in anything but maybe 2 minutes of Elmo. I've tried having a sibling or someone else entertain her while I hold her and do the treaments, but she is only distracted for a minute or two. I also don't always have others around when its treatment time. Shes a terrible sleeper so anytime I've tried to do treatments while she is sleeping, I wake her up and she is even more beligerent. I'm out of ideas, so for those who have kids or were once kids, what works?????

*****Please don't tell me that she has no choice and you just have to be firm. Because really that's all the CF center has told me and it doesn't help. I KNOW its non-negotiable, but I don't know how to enforce it and make it happen. I feel like I'm failing at this right now and her health is way too big of a consequence.
 
M

Mommafirst

Guest
My daughter is almost 11 months old. She's not walking quite yet, but is close. She is crawling all over the place and getting very strong and very strong willed. Treatments are becoming impossible. More medicine winds up in the air than in her lungs, and physio is a constant struggle. She cries, screams, arches her back, pushes me away, moves her head so I can't get and keep the mask on, and pushes my hands away during pt on the front and sides (the back I can get!!). Its a miserable experience 2-3 times a day!! I just don't know what to do! I have tried toddler tv, but she has no interest in anything but maybe 2 minutes of Elmo. I've tried having a sibling or someone else entertain her while I hold her and do the treaments, but she is only distracted for a minute or two. I also don't always have others around when its treatment time. Shes a terrible sleeper so anytime I've tried to do treatments while she is sleeping, I wake her up and she is even more beligerent. I'm out of ideas, so for those who have kids or were once kids, what works?????

*****Please don't tell me that she has no choice and you just have to be firm. Because really that's all the CF center has told me and it doesn't help. I KNOW its non-negotiable, but I don't know how to enforce it and make it happen. I feel like I'm failing at this right now and her health is way too big of a consequence.
 
M

Mommafirst

Guest
My daughter is almost 11 months old. She's not walking quite yet, but is close. She is crawling all over the place and getting very strong and very strong willed. Treatments are becoming impossible. More medicine winds up in the air than in her lungs, and physio is a constant struggle. She cries, screams, arches her back, pushes me away, moves her head so I can't get and keep the mask on, and pushes my hands away during pt on the front and sides (the back I can get!!). Its a miserable experience 2-3 times a day!! I just don't know what to do! I have tried toddler tv, but she has no interest in anything but maybe 2 minutes of Elmo. I've tried having a sibling or someone else entertain her while I hold her and do the treaments, but she is only distracted for a minute or two. I also don't always have others around when its treatment time. Shes a terrible sleeper so anytime I've tried to do treatments while she is sleeping, I wake her up and she is even more beligerent. I'm out of ideas, so for those who have kids or were once kids, what works?????

*****Please don't tell me that she has no choice and you just have to be firm. Because really that's all the CF center has told me and it doesn't help. I KNOW its non-negotiable, but I don't know how to enforce it and make it happen. I feel like I'm failing at this right now and her health is way too big of a consequence.
 
R

Ratatosk

Administrator
Staff member
It took two of us to do CPT before the vest. One person held the nebs and sang, while the other did the beatment. We'd sing old mcdonald, make up songs... Around that time DS also got interested in the dreaded purple dinosaur. Think it's subliminal messaging and hypnotises them.

Early morning CPT, he'd sleep thru it. After work was the worst and he'd try to climb around and he'd throw a fit. Late night he usually fell asleep during it or was sleeping.
 
R

Ratatosk

Administrator
Staff member
It took two of us to do CPT before the vest. One person held the nebs and sang, while the other did the beatment. We'd sing old mcdonald, make up songs... Around that time DS also got interested in the dreaded purple dinosaur. Think it's subliminal messaging and hypnotises them.

Early morning CPT, he'd sleep thru it. After work was the worst and he'd try to climb around and he'd throw a fit. Late night he usually fell asleep during it or was sleeping.
 
R

Ratatosk

Administrator
Staff member
It took two of us to do CPT before the vest. One person held the nebs and sang, while the other did the beatment. We'd sing old mcdonald, make up songs... Around that time DS also got interested in the dreaded purple dinosaur. Think it's subliminal messaging and hypnotises them.

Early morning CPT, he'd sleep thru it. After work was the worst and he'd try to climb around and he'd throw a fit. Late night he usually fell asleep during it or was sleeping.
 
F

folione

New member
Ask your CF doctor about using a holding chamber with metered dose inhalers for the albuterol and Flovent. Flovent does what pulmicort does.

My son's CF doctor said there are studies showing that for toddlers they actually ended up getting more of the medicine using a holding chamber and inhalers than via nebulizer - at least in part for the reasons you're dealing with. They take about 10-20 seconds of breathing by the patient instead of 10-20 minutes so even in a struggle it can wind up a better dosing than blowing it all over the living room with the nebulizer.

We used these for my son and still use them on days when things are a bit rushed to get out the door in the morning.
 
F

folione

New member
Ask your CF doctor about using a holding chamber with metered dose inhalers for the albuterol and Flovent. Flovent does what pulmicort does.

My son's CF doctor said there are studies showing that for toddlers they actually ended up getting more of the medicine using a holding chamber and inhalers than via nebulizer - at least in part for the reasons you're dealing with. They take about 10-20 seconds of breathing by the patient instead of 10-20 minutes so even in a struggle it can wind up a better dosing than blowing it all over the living room with the nebulizer.

We used these for my son and still use them on days when things are a bit rushed to get out the door in the morning.
 
F

folione

New member
Ask your CF doctor about using a holding chamber with metered dose inhalers for the albuterol and Flovent. Flovent does what pulmicort does.

My son's CF doctor said there are studies showing that for toddlers they actually ended up getting more of the medicine using a holding chamber and inhalers than via nebulizer - at least in part for the reasons you're dealing with. They take about 10-20 seconds of breathing by the patient instead of 10-20 minutes so even in a struggle it can wind up a better dosing than blowing it all over the living room with the nebulizer.

We used these for my son and still use them on days when things are a bit rushed to get out the door in the morning.
 
M

Mommafirst

Guest
That's a wonderful suggestion, I will ask!! Thank you!!
 
M

Mommafirst

Guest
That's a wonderful suggestion, I will ask!! Thank you!!
 
M

Mommafirst

Guest
That's a wonderful suggestion, I will ask!! Thank you!!
 
M

mneville

Guest
We had the same problem with Aidan at that age. We actaully started doing treatments while he was asleep. Not all the time b/c we still wanted him to get used to it but there were times when the fight was too much. I wanted to make sure I always got one good treatment in.

The VEST has been so great for us. He does it an hour daily with not a problem along with 3 nebulizer treatments. It gets easier as they get a little older b/c I can hold his interest with different things while he does the VEST. Good luck and have faith!

Megan
 
M

mneville

Guest
We had the same problem with Aidan at that age. We actaully started doing treatments while he was asleep. Not all the time b/c we still wanted him to get used to it but there were times when the fight was too much. I wanted to make sure I always got one good treatment in.

The VEST has been so great for us. He does it an hour daily with not a problem along with 3 nebulizer treatments. It gets easier as they get a little older b/c I can hold his interest with different things while he does the VEST. Good luck and have faith!

Megan
 
M

mneville

Guest
We had the same problem with Aidan at that age. We actaully started doing treatments while he was asleep. Not all the time b/c we still wanted him to get used to it but there were times when the fight was too much. I wanted to make sure I always got one good treatment in.

The VEST has been so great for us. He does it an hour daily with not a problem along with 3 nebulizer treatments. It gets easier as they get a little older b/c I can hold his interest with different things while he does the VEST. Good luck and have faith!

Megan
 
P

PinkRaysOfSunshine

New member
I have done everything but hog tie my 8 1/2 month old girl. I have the same problem! We got an inhaler and thats great for the albuterol... but the tobi and pulmozyme u just gotta tough it out. If u figure out a better way let me know... somethings wrong with out thingie... and it takes tobi 30 minutes... so its awful... (were gettin a new one) ... but she SCREAMS and KICKS and HAS A BIG OL' FIT for the first 10 minutes.. then she plays with a toy or something.... doing it while she sleeps is what i found to be the best.... but... like u said.. it doesnt always work.. and sometimes the whole day gets off schedule because im waiting for her to go to bed to give her a treatment.....
 
P

PinkRaysOfSunshine

New member
I have done everything but hog tie my 8 1/2 month old girl. I have the same problem! We got an inhaler and thats great for the albuterol... but the tobi and pulmozyme u just gotta tough it out. If u figure out a better way let me know... somethings wrong with out thingie... and it takes tobi 30 minutes... so its awful... (were gettin a new one) ... but she SCREAMS and KICKS and HAS A BIG OL' FIT for the first 10 minutes.. then she plays with a toy or something.... doing it while she sleeps is what i found to be the best.... but... like u said.. it doesnt always work.. and sometimes the whole day gets off schedule because im waiting for her to go to bed to give her a treatment.....
 
P

PinkRaysOfSunshine

New member
I have done everything but hog tie my 8 1/2 month old girl. I have the same problem! We got an inhaler and thats great for the albuterol... but the tobi and pulmozyme u just gotta tough it out. If u figure out a better way let me know... somethings wrong with out thingie... and it takes tobi 30 minutes... so its awful... (were gettin a new one) ... but she SCREAMS and KICKS and HAS A BIG OL' FIT for the first 10 minutes.. then she plays with a toy or something.... doing it while she sleeps is what i found to be the best.... but... like u said.. it doesnt always work.. and sometimes the whole day gets off schedule because im waiting for her to go to bed to give her a treatment.....
 
S

sdelorenzo

Guest
Cedarmont Kids videos and Baby Einstein kept my kids still for a little while.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Cedarmont Kids videos and Baby Einstein kept my kids still for a little while.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
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