ChristyLee619
New member
When I do my son's CPT, he screams his head off the entire time. Does anyone have any advice on how I can make him more comfortable during it or how I can distract him, etc?
CPT for 2 month old baby
- Thread starter ChristyLee619
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Aboveallislove
Super Moderator
A couple thoughts: Try when sleeping (I know that's hard on you b/c you need downtime too). Work up to when sleepy in positions that are easier, such as back like burbing and might fall asleep. Do front with them looking at you by having legs up on a ottoman and then you can use facial expressions to engage and distract. Use videos to distract (not a fan of TV that young, but this is more important). Hang in there, it gets alot easier especially if you don't give in to the cries and it is "normal" that you plug through it. Hugs and prayers.
We did cpt while sleeping. I'd sing aloud, to drown out the crying. Actually at this age ds got used to it, it calmed him and he'd sleep or fall asleep during it. The times he cried, I figured it'd just help his lung development. It HAS to be done, it will get better. I'd rather have tears at home something worse
MotherofCFBoy11yrs
Member
As far as I know there is no evidence that CPT in infants is beneficial, but most CF centers tell you to do it. In any case would not get too stressed about it. We've never done it and my son is doing very well. When you have some time and energy you might start looking at articles about CF, there are different ways it can be treated.
Our doctor always stressed being proactive, practicing good lung care -- to get into a routine. And it worked out well for us, because CPT/vesting was the norm for ds. It was expected and he became used to it. I have a friend whose daughter wasn't diagnosed until 18 months and CPT was a MAJOR struggle for an opinionated, active toddler.
Aboveallislove
Super Moderator
I agree with Ratatosk. We did PT 3x a day 20 minutes a time until DS could do the vest. It would be very hard to have scientific evidence it benefits infants since doing lung function tests is very difficult--only about 6 US centers can do for under 2 and then nothing from 2 - 6. I also agree that getting in the routine now will be soooo much better for later. By 6 months DS loved it and now at 4 he'll sometimes ask for taps when he wants to relax. I have a video of him at like 6 months giggling up a storm while doing "taps". Stay strong and push throw and it will get better!!!
MotherofCFBoy11yrs
Member
There has been quite a bit of controversy over the usefulness of CPT, a recent Cochrane summary concluded that there is no evidence of it's long term benefit (or harm), and this is in any age group. But especially it's usefulness with infants has been questioned. Nevertheless many doctors support CPT strongly and it is part of CF care in most centers.
I'm just thinking that it's probably not worth stressing about with a small baby, coming to terms with CF is hard enough. I think the most useful proactive step would be to ensure the CF team are keeping close track of any airway infections (throat swab? nasolaryngeal suction) and treating anything that is found, and also making sure that the CF centre has a strict infection control policy.
I'm just thinking that it's probably not worth stressing about with a small baby, coming to terms with CF is hard enough. I think the most useful proactive step would be to ensure the CF team are keeping close track of any airway infections (throat swab? nasolaryngeal suction) and treating anything that is found, and also making sure that the CF centre has a strict infection control policy.
Aboveallislove
Super Moderator
I agree not to stress over it if dear baby can't handle the whole 20 minutes and to be realistic on both baby and mommy needs during this horrible overwhelming time. But pushing through and figuring out what works best to do what doctors want I think is best. And knowing it does get better. And every few months the routine you get down will change as baby grows and you figure out what works and doesnt.
We did manual CPT on our daughter starting when she was a newborn in the NICU. It became part of our daily routine. Just like changing her diaper and giving her a bath. If she was fussy; we would do CPT while she was sleeping. I usually did the am routine, my husband the evening one; I was too tired at that time.
My daughter would actually find it comforting as a baby; fall asleep sometimes while we did it.. Even as an almost 11 year old, if my daughter is feeling very junky, wheezy or coughy, she'll request i do CPT in her bed before bedtime(even though we have the VEST)
Try to stay relaxed; if the baby is fussy try music; rocking them and cuddling them prior to CPT. Make it your special time. Even a few minutes and then come back to it.
Do you have other children to use as a distraction; pets? FInd the comforting thing and add it to your CPT session.
CF is a lifelong struggle; we have made our daughter's nebs and VEST as a regular part of day as possible. We are flexible and creative. When she was 2 1/2 years old; she got the VEST and we got her a fuzzy Elmo chair to sit in while she did her vest. You will figure it out.
Also, be cautious when trying to analyze research articles/data. Looking at sample size and other factors is key. Things can be interpreted different ways...If the CF doc wants you to incorporate CPT for your baby that is the standard of care in CF centers and should be done.
My daughter would actually find it comforting as a baby; fall asleep sometimes while we did it.. Even as an almost 11 year old, if my daughter is feeling very junky, wheezy or coughy, she'll request i do CPT in her bed before bedtime(even though we have the VEST)
Try to stay relaxed; if the baby is fussy try music; rocking them and cuddling them prior to CPT. Make it your special time. Even a few minutes and then come back to it.
Do you have other children to use as a distraction; pets? FInd the comforting thing and add it to your CPT session.
CF is a lifelong struggle; we have made our daughter's nebs and VEST as a regular part of day as possible. We are flexible and creative. When she was 2 1/2 years old; she got the VEST and we got her a fuzzy Elmo chair to sit in while she did her vest. You will figure it out.
Also, be cautious when trying to analyze research articles/data. Looking at sample size and other factors is key. Things can be interpreted different ways...If the CF doc wants you to incorporate CPT for your baby that is the standard of care in CF centers and should be done.
I would take your CPT cups to your next CF clinic visit or ask for an appointment with the respiratory therapist and show him/her what you are doing. They can either adjust your technique or tell you that you are doing it right. Either way as a new mom you will leave with more confidence.
For my daughter I had easy PROOF CPT worked. We started CPT in the hospital when she had pneumonia. I was told to continue at home. I did this for 6 weeks and then a phone conversation with the pulmonologist who undiagnosed my daughter with CF that day. The doctor told me he thought it was in my daughter's, age 11 at the time, head that CPT worked. So I waited that night and when she didn't ask for CPT I let it go. She woke up the next morning with her cough back she had for many years. I took her to the pediatrician, so he could hear the cough. The pediatrician called the pulmonologist and explain how junky her lungs sounded. We restarted Manuel CPT until her vest arrived. Now her baseline is no cough unless she is sick. She is treated for CF although only I am officially diagnosed.
We did Manuel chest PT when she was a baby and had pneumonia and CF was first suspected. We stopped when CF was ruled out and she coughed for many years always sick until we restarted at age 11.
For my child there is proof. In the past 3 years of vesting she skipped one night. At 14 now I didn't argue with her for skipping a night. In the morning she woke up early coughing and voluntarily did 3 treatments the next day. She is back to 2 to 3 vest treatments a day on her own.
keep doing the right proactive thing for your child
For my daughter I had easy PROOF CPT worked. We started CPT in the hospital when she had pneumonia. I was told to continue at home. I did this for 6 weeks and then a phone conversation with the pulmonologist who undiagnosed my daughter with CF that day. The doctor told me he thought it was in my daughter's, age 11 at the time, head that CPT worked. So I waited that night and when she didn't ask for CPT I let it go. She woke up the next morning with her cough back she had for many years. I took her to the pediatrician, so he could hear the cough. The pediatrician called the pulmonologist and explain how junky her lungs sounded. We restarted Manuel CPT until her vest arrived. Now her baseline is no cough unless she is sick. She is treated for CF although only I am officially diagnosed.
We did Manuel chest PT when she was a baby and had pneumonia and CF was first suspected. We stopped when CF was ruled out and she coughed for many years always sick until we restarted at age 11.
For my child there is proof. In the past 3 years of vesting she skipped one night. At 14 now I didn't argue with her for skipping a night. In the morning she woke up early coughing and voluntarily did 3 treatments the next day. She is back to 2 to 3 vest treatments a day on her own.
keep doing the right proactive thing for your child
ChristyLee619
New member
Thank you SO much everyone! All wonderful suggestions! This has all been so difficult to come to terms with but I know it'll get better.. it's amazing how much it helps to have the advice and support of others.
I remember feeling so overwhelmed when ds was diagnosed. He was a terrible eater, terrible napper, there was so much I felt we had to learn -- medications, treatments -- add to that the worries and what ifs, the whole issue of what we expected when we decided to become parents and the realization that our child had cf.... Just take it one day at a time, one step at a time and eventually you'll get into a routine, things will become second nature. CPT will just become matter of fact. I still worry, I still have issues adjusting to a change in medications or routines. And on Friday night after 10 plus years of dealing wcf. I FORGOT ds' bedtime meds. Did his vest treatment, got him a bedtime snack with his enzymes, but woke up the next morning and noticed WHOOPS. Beat myself up briefly for being a terrible parent and then realized that I won't be forgetting that any time soon.
ForeverDance
New member
I remember struggling with the CPT when my daughter was very small. She really hated it. Sometimes I would sing to her and sometimes I would just talk to her. I was told by my clinic not to get in the habit of doing it while she was sleeping so that she can learn to adjust to it as a normal part of her life. I think my daughter was about 6-8 months before I thought to turn the TV on to a channel for kids. That helped a lot. She would still cry for certain positions but not all of them. A couple of months later she stopped crying all together.
when I was a newborn, back in 1973 my mom would carry me in a sling where ever she went as I was always gasping and highly emotional, especially after being diagnosed 4months late and under my birth-weight. Thank God my mom was a stay at home mom and had an abundant money source due to my grandma and father.
My Mom learned that putting me over her knee faced down while rocking her leg and knee at the same time back and forth helped, as it was a rocking motion, then she would pat me on the back to get the junk up while holding 1 arm at the same time. Play around with it, do more rocking then patting and perhaps do an occasional patting till your baby gets used to it... try not moving your knee but just your leg up and down. Perhaps you can try just holding her legs and see if she will be fine just hanging over your knee while being patted on the back, this could be a fun thing.
This method is simple enough and soothing, hope you find the method you are looking for.
My Mom learned that putting me over her knee faced down while rocking her leg and knee at the same time back and forth helped, as it was a rocking motion, then she would pat me on the back to get the junk up while holding 1 arm at the same time. Play around with it, do more rocking then patting and perhaps do an occasional patting till your baby gets used to it... try not moving your knee but just your leg up and down. Perhaps you can try just holding her legs and see if she will be fine just hanging over your knee while being patted on the back, this could be a fun thing.
This method is simple enough and soothing, hope you find the method you are looking for.
ChristyLee619
New member
Thank you so much for all of the advice and kind words! It helps so much to know that it probably won't always be so bad. I'll definitely be trying out the different advice from everyone!
Helenlight
New member
Hi, Just another one to add: we have been doing CPT on our little girl since diagnosis at 9 weeks old. She enjoys being 'jiggled' on our knees during physio, and in the early months she also loved it if another person sang, danced or 'acted' using her toys and puppets. Since about 10 months she has preferred specific children's programs (we preferred to use DVDs and youtube to limit exposure to advertising and the more obnoxious kids shows on TV, especially while so young). She/we have enjoyed Pocoyo, Peppa Pig, Maisy, Charlie and Lola, KidsTV123 (youtube), Barefoot Books (youtube),aand many shows from cbeebees (UK). At 2 years old she now holds her own nebuliser and generally relaxes during physio (there are good days and difficult days though!). Good luck
A
Allansarmy
Guest
Actually crying is good for the lungs. Seriously it is, but I know you don't want to make your child cry like this. So, as others have said, once you get into a rhythm of lite tapping it gets easier. Also, you might try using towels to cushion better. Once your child gets old enough they can wear THE VEST, which is a God send. My son has been using it for years now and although he still would rather rub lemon juice in his eyes, he prefers The Vest over CPTs anyday of the week.
Quick story about CPTs. I remember when my son was around 2 years old, the Respiratory therapist would come into the room at freaking 2 am and flip on lights and be talking on his cell phone speaking Middle Eastern, as if it weren't annoying enough (sorry if that offends people here) but many know exactly where I am coming from so take it for what it is. The guy would come in and speak loud into the phone, flip on lights and have a full blown conversation, do a mask treatments for my son, and then do CPT therapy. My son's body would literally be jumping up and down by 8 inches off the bed and my son stayed asleep through the entire process (except me of course). Needless to say the next day, we had no more visits by Respiratory therapist at 2 am
Quick story about CPTs. I remember when my son was around 2 years old, the Respiratory therapist would come into the room at freaking 2 am and flip on lights and be talking on his cell phone speaking Middle Eastern, as if it weren't annoying enough (sorry if that offends people here) but many know exactly where I am coming from so take it for what it is. The guy would come in and speak loud into the phone, flip on lights and have a full blown conversation, do a mask treatments for my son, and then do CPT therapy. My son's body would literally be jumping up and down by 8 inches off the bed and my son stayed asleep through the entire process (except me of course). Needless to say the next day, we had no more visits by Respiratory therapist at 2 am