trouble with care routine

[reedfamily07]

<div>I have two boys (ages 3 and 18 months) that have both been diagnosed with atypical CF. They have both cultured positive for pseudomonus (sp?) and are sick often. My oldest seems to have the worst of it, and is sick frequently. Right now they both have pneumonia again. My youngest has been on the same care routine as my oldest for several months now. However, since they are both sick, their doctor has upped their routine to two different neb treatments for a total of 6 treatments a day, and their vest 4 times a day. My oldest is a champ and handles all the treatments really well. The youngest on the other hand turns into the incredible Hulk every time we have to sit down and do this. I have tried absolutely everything I can think of to keep him calm while we do his treatments. He thrashes, claws, screams... the whole nine yards. It's literally like alligator wrestling. I figured by now he would have gotten used to it, but that clearly is not the case. We've tried turning on his favorite show, reading, singing, coloring, playing with his favorite toys... the list goes on and on. I've even tried doing his neb treatments while he's sleeping, and that is a complete bust. I am at an absolute loss as to how to get him to calm down so his routine isn't a full on battle 10 times a day. It's exhausting for both of us. </div><div> </div><div>I could use any tips or ideas anyone has. </div>

 

[reedfamily07]

I have two boys (ages 3 and 18 months) that have both been diagnosed with atypical CF. They have both cultured positive for pseudomonus (sp?) and are sick often. My oldest seems to have the worst of it, and is sick frequently. Right now they both have pneumonia again. My youngest has been on the same care routine as my oldest for several months now. However, since they are both sick, their doctor has upped their routine to two different neb treatments for a total of 6 treatments a day, and their vest 4 times a day. My oldest is a champ and handles all the treatments really well. The youngest on the other hand turns into the incredible Hulk every time we have to sit down and do this. I have tried absolutely everything I can think of to keep him calm while we do his treatments. He thrashes, claws, screams... the whole nine yards. It's literally like alligator wrestling. I figured by now he would have gotten used to it, but that clearly is not the case. We've tried turning on his favorite show, reading, singing, coloring, playing with his favorite toys... the list goes on and on. I've even tried doing his neb treatments while he's sleeping, and that is a complete bust. I am at an absolute loss as to how to get him to calm down so his routine isn't a full on battle 10 times a day. It's exhausting for both of us. I could use any tips or ideas anyone has.

 

[reedfamily07]

I have two boys (ages 3 and 18 months) that have both been diagnosed with atypical CF. They have both cultured positive for pseudomonus (sp?) and are sick often. My oldest seems to have the worst of it, and is sick frequently. Right now they both have pneumonia again. My youngest has been on the same care routine as my oldest for several months now. However, since they are both sick, their doctor has upped their routine to two different neb treatments for a total of 6 treatments a day, and their vest 4 times a day. My oldest is a champ and handles all the treatments really well. The youngest on the other hand turns into the incredible Hulk every time we have to sit down and do this. I have tried absolutely everything I can think of to keep him calm while we do his treatments. He thrashes, claws, screams... the whole nine yards. It's literally like alligator wrestling. I figured by now he would have gotten used to it, but that clearly is not the case. We've tried turning on his favorite show, reading, singing, coloring, playing with his favorite toys... the list goes on and on. I've even tried doing his neb treatments while he's sleeping, and that is a complete bust. I am at an absolute loss as to how to get him to calm down so his routine isn't a full on battle 10 times a day. It's exhausting for both of us. I could use any tips or ideas anyone has.

 

[Havoc]

When I was a kid, I never liked treatments, but did them anyway. I was an active kid, however and at one point my CF team told my parents that they didn't necessarily have to do chest PT (we didn't have the vest back then) regularly if I was remaining active (running, playing swimming, riding my bike etc.).

I still adhere to that today. I do not vest, rather, I remain active in sports. It's much more fun and I've got wicked high PFTs to show for it.

As for nebs, that's a different problem. Perhaps you could speak with your doc about doing a regular inhaler with a spacer frequently throughout the day. That would eliminate the bronchodilator. If he does pulmozyme, tobi or hypertonic saline, then there's really not much alternative to that.

Maybe try some positive reinforcement for doing treatments without a fuss.

 

[Havoc]

When I was a kid, I never liked treatments, but did them anyway. I was an active kid, however and at one point my CF team told my parents that they didn't necessarily have to do chest PT (we didn't have the vest back then) regularly if I was remaining active (running, playing swimming, riding my bike etc.).

I still adhere to that today. I do not vest, rather, I remain active in sports. It's much more fun and I've got wicked high PFTs to show for it.

As for nebs, that's a different problem. Perhaps you could speak with your doc about doing a regular inhaler with a spacer frequently throughout the day. That would eliminate the bronchodilator. If he does pulmozyme, tobi or hypertonic saline, then there's really not much alternative to that.

Maybe try some positive reinforcement for doing treatments without a fuss.

 

[Havoc]

When I was a kid, I never liked treatments, but did them anyway. I was an active kid, however and at one point my CF team told my parents that they didn't necessarily have to do chest PT (we didn't have the vest back then) regularly if I was remaining active (running, playing swimming, riding my bike etc.).
<br />
<br />I still adhere to that today. I do not vest, rather, I remain active in sports. It's much more fun and I've got wicked high PFTs to show for it.
<br />
<br />As for nebs, that's a different problem. Perhaps you could speak with your doc about doing a regular inhaler with a spacer frequently throughout the day. That would eliminate the bronchodilator. If he does pulmozyme, tobi or hypertonic saline, then there's really not much alternative to that.
<br />
<br />Maybe try some positive reinforcement for doing treatments without a fuss.

 

[reedfamily07]

Thank you for your input. He does pulmozyme twice a day. I would gladly praise for him getting through a treatment with even a little fuss, but it just doesn't happen. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[reedfamily07]

Thank you for your input. He does pulmozyme twice a day. I would gladly praise for him getting through a treatment with even a little fuss, but it just doesn't happen. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[reedfamily07]

Thank you for your input. He does pulmozyme twice a day. I would gladly praise for him getting through a treatment with even a little fuss, but it just doesn't happen. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Havoc]

I can understand, even I put up a fuss with pulmozyme. I've only done it twice and I refuse to do it on a regular basis. I don't find it effective and it tears my vocal cords to shreds. I completely lost my voice after 9 days on it in August.

Speak with his doc. I kind of doubt he is getting much benefit from these treatments and he might form a real aversion to any kind of treatments which will be very difficult to break when he is older. I'm not a child psychologist, so I don't know how much a negative experience at that young of an age would affect his response when he is older. Also. you might try posting this question in the parenting section with Lisa Greene.

Best of luck!

 

[Havoc]

I can understand, even I put up a fuss with pulmozyme. I've only done it twice and I refuse to do it on a regular basis. I don't find it effective and it tears my vocal cords to shreds. I completely lost my voice after 9 days on it in August.

Speak with his doc. I kind of doubt he is getting much benefit from these treatments and he might form a real aversion to any kind of treatments which will be very difficult to break when he is older. I'm not a child psychologist, so I don't know how much a negative experience at that young of an age would affect his response when he is older. Also. you might try posting this question in the parenting section with Lisa Greene.

Best of luck!

 

[Havoc]

I can understand, even I put up a fuss with pulmozyme. I've only done it twice and I refuse to do it on a regular basis. I don't find it effective and it tears my vocal cords to shreds. I completely lost my voice after 9 days on it in August.
<br />
<br />Speak with his doc. I kind of doubt he is getting much benefit from these treatments and he might form a real aversion to any kind of treatments which will be very difficult to break when he is older. I'm not a child psychologist, so I don't know how much a negative experience at that young of an age would affect his response when he is older. Also. you might try posting this question in the parenting section with Lisa Greene.
<br />
<br />Best of luck!

 

[bananagirl]

So I don't think I ever had a problem with doing my treatments but I do remember some times when I actually liked doing them. This was when my cousins were around. What made it so fun was that they all thought my vest was so cool. When I did my treatment they would ask me questions and we would all have fun with the funny voice that my vest made me have. They also used to think that it was like an astronaut suit and we would count down to lift off when I would start. At the end my cousins would all want to try it on and do it. They all thought it was so cool and fun. That really helped me to like it better. Sometimes I was even glad that I got to do this cool vest thing. Maybe you could try to turn it into a game with your son. Or pretend it is an astronaut suit you could maybe even make a pretend ship out of cardboard to sit in while he does it. Also maybe you could put stickers on the machine and vest or something like that to make it look more fun. I hope this helps!

 

[bananagirl]

So I don't think I ever had a problem with doing my treatments but I do remember some times when I actually liked doing them. This was when my cousins were around. What made it so fun was that they all thought my vest was so cool. When I did my treatment they would ask me questions and we would all have fun with the funny voice that my vest made me have. They also used to think that it was like an astronaut suit and we would count down to lift off when I would start. At the end my cousins would all want to try it on and do it. They all thought it was so cool and fun. That really helped me to like it better. Sometimes I was even glad that I got to do this cool vest thing. Maybe you could try to turn it into a game with your son. Or pretend it is an astronaut suit you could maybe even make a pretend ship out of cardboard to sit in while he does it. Also maybe you could put stickers on the machine and vest or something like that to make it look more fun. I hope this helps!

 

[JennStar23]

hi my names jenn and im 24 and new to this site but i was very curious to you saying you dont do your vest and your nebs? i hate doing both so i was wondering on your advice on how to stay healthy and not waste my time doing treatments?

 

[JennStar23]

hi my names jenn and im 24 and new to this site but i was very curious to you saying you dont do your vest and your nebs? i hate doing both so i was wondering on your advice on how to stay healthy and not waste my time doing treatments?

 

[Hardak]

How old is the youngest that's having trouble with the treatments? It may also be that he/she is reacting badly to the treatments. I've got one chunk of ribs my self that hurt for days if I'm in a vest for even a min or two. I also react badly to most all inhaled antibiotics. Have you tried to see if doing some alternate form of airway clearance is tolerated with this child?

 

[Hardak]

How old is the youngest that's having trouble with the treatments? It may also be that he/she is reacting badly to the treatments. I've got one chunk of ribs my self that hurt for days if I'm in a vest for even a min or two. I also react badly to most all inhaled antibiotics. Have you tried to see if doing some alternate form of airway clearance is tolerated with this child?

 

[Kaethe108]

I am sorry to hear that u are having so much trouble with the daily treatment routine. My daughter is only 10 months old, so I cannot speak much from experience myself, but I studied a little bit of child psychology and can only support what bananagirl wrote! You only chance is to get it away from a "terrible must" to a more fun like approach. A book (and/or DVD) that might help you is "The happiest toddler on the block". It is written by Dr. Harvey Karp and the guy is a genius in understanding children's minds. A few quick tipps from book: * the child must feel that you really understand his/her feelings. Saying "Oh darling, it's not so bad" will make the child even more aggressive. Karp teaches a great way to deal with that including mirroring (?)/to mirror the child's feelings and using "toddler language" (check out some videos on Youtube to get an impression!) * use tricks like praising the child, pretending that she/he should not hear your praise (e.g. "whisper" to your spouse that you are very proud that he/she does the treatment better and better. Of course the child should overhear it...) * make fun of yourself to relax the situation/playing the clown (t.g. put the vest on your head and pretend that you realy don't understand why it doesn't work...) And I love the idea of building a spaceship!! Your older child could be the captain and pretend that he really really needs a co-astronaut! To break the cycle maybe it would be an idea to skip the treatments for one or two days if possible and then make a new start? Pls check the book, I am sure it will help you! All the best!!! ;o)
P.S. I just saw that this thread is already very old. Sorry...

 

[Kaethe108]

I am sorry to hear that u are having so much trouble with the daily treatment routine. My daughter is only 10 months old, so I cannot speak much from experience myself, but I studied a little bit of child psychology and can only support what bananagirl wrote! You only chance is to get it away from a "terrible must" to a more fun like approach. A book (and/or DVD) that might help you is "The happiest toddler on the block". It is written by Dr. Harvey Karp and the guy is a genius in understanding children's minds. A few quick tipps from book: * the child must feel that you really understand his/her feelings. Saying "Oh darling, it's not so bad" will make the child even more aggressive. Karp teaches a great way to deal with that including mirroring (?)/to mirror the child's feelings and using "toddler language" (check out some videos on Youtube to get an impression!) * use tricks like praising the child, pretending that she/he should not hear your praise (e.g. "whisper" to your spouse that you are very proud that he/she does the treatment better and better. Of course the child should overhear it...) * make fun of yourself to relax the situation/playing the clown (t.g. put the vest on your head and pretend that you realy don't understand why it doesn't work...) And I love the idea of building a spaceship!! Your older child could be the captain and pretend that he really really needs a co-astronaut! To break the cycle maybe it would be an idea to skip the treatments for one or two days if possible and then make a new start? Pls check the book, I am sure it will help you! All the best!!! ;o)
P.S. I just saw that this thread is already very old. Sorry...