So my son Trevor is 16 months old. He gets Albuterol and Pulmicort 2x a day and Pulmozyme once a day (I usually do it at night due to having more time.) He has never really had a good bedtime routine. I used to be able to do his nebs when he first started getting sleepy and he would fall asleep during them. However, he is catching on and is fighting his sleep. I find myself up later and later every night waiting to do his nebs. I don't know what to do cause I don't want him to scream through them. He is really fighting them. I didnt know if anyone had any suggestions...
Night time routine..
- Thread starter KAC1210
- Start date
Hi, my daughter is 19 mos old and does many nebs as well. Sometimes they can be stressful. I usually try to keep her occupied with toys or something that she likes to do.
Can you ask about inhalers? We switched my daughter to inhalers to save time and it has been great! We still of course have the HTS and Pulmozyme that can't be switched, but the albuterol and Pulmicort can be switched to inhalers <img src="i/expressions/face-icon-small-blush.gif" border="0">) Saves time and fighting!
Will he play with toys or something while you do it? It may take a week or so for him to get used to it, but I would keep trying. I have to hold Jordin's mask in front of her face cuz she usually won't wear it. The inhaler took her a few days to get used to too, but she does good for the most part w/ the nebs now and will do the inhaler herself if I let her! LOL
Hope something helps here <img src="i/expressions/face-icon-small-blush.gif" border="0">) PM me if you have any questions!
Can you ask about inhalers? We switched my daughter to inhalers to save time and it has been great! We still of course have the HTS and Pulmozyme that can't be switched, but the albuterol and Pulmicort can be switched to inhalers <img src="i/expressions/face-icon-small-blush.gif" border="0">) Saves time and fighting!
Will he play with toys or something while you do it? It may take a week or so for him to get used to it, but I would keep trying. I have to hold Jordin's mask in front of her face cuz she usually won't wear it. The inhaler took her a few days to get used to too, but she does good for the most part w/ the nebs now and will do the inhaler herself if I let her! LOL
Hope something helps here <img src="i/expressions/face-icon-small-blush.gif" border="0">) PM me if you have any questions!
M
Mommafirst
Guest
I definitely agree about moving as many nebs as you can to inhalers. I remember when my daughter was that age, and it was REALLY difficult. I thought it would be that miserable forever, but it did get better. Getting a consistent routine that he can depend on (as it seems you are trying to figure out) will definitely be necessary.
Our night times go like this:
after dinner is bathtime.
After bath, we set up the nebs. I let Alyssa help as much as possible, this way she knows what's coming and its made it easier to get everything going. While we put the med in the nebs, etc., we discuss what we are going to do during treatment time.
Treatment time is Alyssa time. She gets to decide what we watch or play and who she plays with. Some days we watch a movie, some we play a game on the ipad or cards. When she was too little to play cards, we did puzzles or colored with crayons.
Treatment time is non-negotiable. She has control over what we do WITH the treatment, but the treatment itself HAS to happen. If she wants it to be fun, she'll choose not to melt down or cry. If she does cry, I'll just hold her down and hold the nebs on her.
It SUCKS, to have them cry through the nebs. But if you just stick to it, he will eventually resist less and less. Eventually he'll sit there and do what he needs to.
Hang in there....he'll get there. At first he'll fight every day, but soon it will be every other day, or every third day, and eventually you'll forget that he fought the treatments every day. We still have an occasional meltdown over treatments, its not a perfect system, but its sooooo much better.
Our night times go like this:
after dinner is bathtime.
After bath, we set up the nebs. I let Alyssa help as much as possible, this way she knows what's coming and its made it easier to get everything going. While we put the med in the nebs, etc., we discuss what we are going to do during treatment time.
Treatment time is Alyssa time. She gets to decide what we watch or play and who she plays with. Some days we watch a movie, some we play a game on the ipad or cards. When she was too little to play cards, we did puzzles or colored with crayons.
Treatment time is non-negotiable. She has control over what we do WITH the treatment, but the treatment itself HAS to happen. If she wants it to be fun, she'll choose not to melt down or cry. If she does cry, I'll just hold her down and hold the nebs on her.
It SUCKS, to have them cry through the nebs. But if you just stick to it, he will eventually resist less and less. Eventually he'll sit there and do what he needs to.
Hang in there....he'll get there. At first he'll fight every day, but soon it will be every other day, or every third day, and eventually you'll forget that he fought the treatments every day. We still have an occasional meltdown over treatments, its not a perfect system, but its sooooo much better.
Sadie will watch TV while doing her nebs and she hates the mask so we use the mouthpiece that she can hold. We let her play with it (empty, of course), that seemed to help make it less scary, but sometimes I have to sit with her and hold it and play with her hair while she watches TV to get it done. We do it after dinner every night, after her bath.
AleksandraKaczynska
New member
Joanna is 3 years old.
The inhaltions we do in the morning after breakfast - she usually wakes up hungry
and in the afternoon after supper just before bed - she sometimes falls asleep.
It's her time as well - she plays or watches movies - she can choose who will do the inhaltion and what she'll be doing - playing with dolls, drawing, reading or anything. I ask her to help me make the inhaltaion - prepare nebs, add salt and so on... I tell her what I'm doing and why....
If we have a bad day I usually have to make her stand in the corner for some time or tell her I won't hug her or turn the tv off... it works and has been working for a longer time now. She also understands - that no inhaltion and CPT = no swimming lessons or playing outside...
We use a mouthpiece usually - but sometimes we change if she insistes on using mask. If she wants to sit alone - o.k. (usually she still sits on my laps).
But the treatment is non negotiable also. Never! Also taking medicine and so on.
When things turn bad for a longer time - we show her a reward she'll get after - lets say - a week of good behavior - also this works miricales - but we have a chart and mark every day off
Good luck.
The inhaltions we do in the morning after breakfast - she usually wakes up hungry
and in the afternoon after supper just before bed - she sometimes falls asleep.It's her time as well - she plays or watches movies - she can choose who will do the inhaltion and what she'll be doing - playing with dolls, drawing, reading or anything. I ask her to help me make the inhaltaion - prepare nebs, add salt and so on... I tell her what I'm doing and why....
If we have a bad day I usually have to make her stand in the corner for some time or tell her I won't hug her or turn the tv off... it works and has been working for a longer time now. She also understands - that no inhaltion and CPT = no swimming lessons or playing outside...
We use a mouthpiece usually - but sometimes we change if she insistes on using mask. If she wants to sit alone - o.k. (usually she still sits on my laps).
But the treatment is non negotiable also. Never! Also taking medicine and so on.
When things turn bad for a longer time - we show her a reward she'll get after - lets say - a week of good behavior - also this works miricales - but we have a chart and mark every day off
Good luck.
That is a tough age. Treatment times in our home our nonnegotiable as well, but is DS' time to choose as well what he wants. We found that DS liked watching Barney -- despite vowing none of our children would ever watch the creepy purple dinosaur, that was what he liked and was what we watched. He soon discovered spongebob and the toy story movies, which made life MUCH easier. Sometimes we'd sing.
When he got to be 4 he discovered video games and with his vest began to ASK when he could do his vest treatments.
When he got to be 4 he discovered video games and with his vest began to ASK when he could do his vest treatments.
AimeeSue82
New member
Hi....I've actually never posted in the "Family" forum before, I just kinda read through them every once in a while. I'm 28 with CF (diagnosed at 3 months old), single, no kids. When I was a kid there were very few drugs and treatments available to my parents. Mainly albuterol, amoxicilin and CPT. I also rarely had lung issues until high school- I had bad G.I. stuff, that's how I was dx. But my parents were told I had to do nebs and CPT to prevent future lung damage. I vividly remember running around the house being CHASED by my parents/brother to try to hold me down for "thumping" (CPT). Screaming and crying because thumping hurt so much. I didn't understand why I was being tortured and my bro and friends weren't. So here's my question: Do they still make babies and little kids do CPT? At what age can they do the vest or some other airway clearance? I would hate to think that 25 years later, thumping is still the best thing we can do for little tykes. Thanks!
~Aimee
~Aimee
AleksandraKaczynska
New member
I'm afarid thats what we where told. Asia had her thumping since 3 month old. The vest was not accecible here till a year ago - and is very expensive. But I do it so it doesn't hurt her and she sometimes fallls asleep.
DS has been doing CPT since he was a few days old and actually he doesn't mind. It used to calm him as a child and he'd fall asleep. He isn't so restful with the vest. I DO have friends whose children weren't diagnosed until they were several months to a couple years older and they couldn't wait to get the vest because it was a screaming, wrestling match each time.
I vividly remember running around the house being CHASED by my parents/brother to try to hold me down for "thumping" (CPT). Screaming and crying because thumping hurt so much.
I am SO sorry CPT was a painful experience for you.
Emily started with CPT when dx'ed at age 7. She hated, hated, hated it but never described it as being painful. I did it in the worst areas of congestion when she had pneumonia in addition to the vest this past spring and she had it at the hospital this past summer after surgery when she couldn't tolerate the vest yet and she didn't mind it at those times. It felt good to her, I think, when she had pneumonia.
She is SO much more compliant, overall, with the vest though.
I am SO sorry CPT was a painful experience for you.
Emily started with CPT when dx'ed at age 7. She hated, hated, hated it but never described it as being painful. I did it in the worst areas of congestion when she had pneumonia in addition to the vest this past spring and she had it at the hospital this past summer after surgery when she couldn't tolerate the vest yet and she didn't mind it at those times. It felt good to her, I think, when she had pneumonia.
She is SO much more compliant, overall, with the vest though.
aggieswifey04
New member
In my opinion, Id try to do them an hour prior to bed that way you arent pushing the sleeping schedule and you stick to your guns.
My daughter is 6 mo old and does albuterol/dornase and then albuterol/saline 7% the next. Alternating every 4 hours along with pounds. She HATES the saline as well as I do. She hates it because it makes her cough so badly but it gets the gunk up especially if shes crying. I tend to have to suction her at least once during. I hate it only because it takes FOREVER! I never end up finishing it in one sitting only because it would most likely take over an hour for JUST the saline. So to save us grief, I do 30 mins at least of saline. Kylie likes to push the mask away. She KNOWS what it is. She hates the treatments. I usually turn on cartoons and she watches that and I fight between her hands being in her mouth or near her face and her turning her face away from the mask. Shes a lil butt.
But like I said, keep to a SPECIFIC time. That will be the routine. If you keep moving the time, its not a routine. Also doing something he likes will help. In our case, cartoons for a 6mo old wins! =P
Bec
My daughter is 6 mo old and does albuterol/dornase and then albuterol/saline 7% the next. Alternating every 4 hours along with pounds. She HATES the saline as well as I do. She hates it because it makes her cough so badly but it gets the gunk up especially if shes crying. I tend to have to suction her at least once during. I hate it only because it takes FOREVER! I never end up finishing it in one sitting only because it would most likely take over an hour for JUST the saline. So to save us grief, I do 30 mins at least of saline. Kylie likes to push the mask away. She KNOWS what it is. She hates the treatments. I usually turn on cartoons and she watches that and I fight between her hands being in her mouth or near her face and her turning her face away from the mask. Shes a lil butt.
But like I said, keep to a SPECIFIC time. That will be the routine. If you keep moving the time, its not a routine. Also doing something he likes will help. In our case, cartoons for a 6mo old wins! =P
Bec
Thank You so much for all the wonderful advice. I will definetly ask about inhalers for the albuterol and pulmicort at our next clinic visit in Jan. I am just gonna have to pick a time and do it at that time every night. We have never really had a bedtime for our kids but they don't really stay up late either. They have always both been in bed by 830. However, now that Trevor is becoming more aware of what is going on. He is staying up later and later. He used to crawl in my lap around 730 and be ready for nebs and bed. I just hate to hold him down while he crying for his nebs. I am going to take your advice and just do it. He does well during CPT and his vest. I just need to find something to distract him during the nebs. Wish me luck!
I agree there <img src="i/expressions/face-icon-small-blush.gif" border="0">) I find that to be the best time to do Jordin's nebs! While sh eis doing her vest! She likes the vest, so she sits (well, she is a monkey, so she doesn't sit still....but only can go as far as the vest goes which does leave me trying to keep up with her when I can't keep her occupied with something sitting!). BUT I usually always do he nebs while she is doing her vest <img src="i/expressions/face-icon-small-blush.gif" border="0">) I do her inhaler, then start her vest, run her saline neb, then pulmozyme. Then when the vest is finished we do her Flovent (like pulmicort) inhaler. Now we still have Tobi after all that, but she usually does okay.
Another thing I wanted to mention that is a big hit for Jordin (I seen a couple things above about it) is to let them help out! Jordin LOVES helping! SHe can now help put the top back on the neb after I put the solution in and she gets the compressor out and turns it on! LMAO it is cute and she likes doing it. She gets it all ready. She has also always like playing with the neb vials (empty or closed of course and under supervision!) But she will keep busy with an empty neb container and vial for a long time! Try it! Good luck <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Another thing I wanted to mention that is a big hit for Jordin (I seen a couple things above about it) is to let them help out! Jordin LOVES helping! SHe can now help put the top back on the neb after I put the solution in and she gets the compressor out and turns it on! LMAO it is cute and she likes doing it. She gets it all ready. She has also always like playing with the neb vials (empty or closed of course and under supervision!) But she will keep busy with an empty neb container and vial for a long time! Try it! Good luck <img src="i/expressions/face-icon-small-blush.gif" border="0">)
Jaden uses Albuterol & Pulmozyme. We use to give him the Pulmozyme at night but noticed he would get really hyper after his treatments making it more difficult to settle down for bed, exhausting the adults. Now we have him on the Pulmozyme in the morning along with his vest. He is on the vest for 20 mins andt he Pulmozyme is gone usually in 18 or 19. At night he is on the vest for 20 mins with the Albuterol which is usually gone in about 15-16 minutes. He always watches TV; SpongeBob, Dora, Littl Einsteins or Blues Clues. We usually let him hold the mask himself unless he starts taking it off then I will usually sit indian style in front of the TV with him on my lap holding the mask until he is done. there has been times he has fallen asleep before getting treatments so we give him an extra the next day. Not sure if this helps make up for it or not but he seems to be doing really well.