CPT for small kids?When did you get the vest?

[anonymous]

I have a 17 month old daughter Hayley who has CF, diagnosed at 3 months old. I am just wondering how often people with smaller children do their breathing treatments and with what meds? ALso how long do you do CPT and how many times per day? Hayley currently does three breathing treatments per day. Her morning treatment is Xopenex and Pulmicort, then she has an afternoon treatment with Xopenex and and evening treatment with Xopenex. These are bumped to four per day when she is sick or has an infection. We follow each breathing treatment with 15 minutes of CPT and we use Neonatal Manual Percussors that have little blue handles (kind of like beating sticks). Is this the norm for others with small CFers?

Also if you have the vest, how old was your child when they got the vest? How often do you do the treatments with the vest and for how long? Do you like the vest better or manual CPT or do you still do some of each?

We are getting ready for our next clinic visit in 2 weeks and I want to be prepared with any questions I have, so I would really appreciate your replies. Alos if anyone would tell me what kind of "brthday" testing their infants or toddlers have. I know they are doing blood test, but not sure on anything else. SHe has not had a throat culture since she was in the hospital at diagnosis and she cultured staph. How often do the infant/toddler CFers get throat cultures usually?

Thanks in advance to everyone who replies!!!

Becky, Mom to Nathan, 4 w/o CF and Hayley 17 months w/CF

 

[anonymous]

My daughter Sophia received the vest at 14 month and Jack started it at 18 months old. His cf doctor now writes a prescription when his kids turn two, but Jack has just been using his sisters until he turns two. Actually, he probably won't be getting his vest soon as our insurance now only will pay $1,500 out of the $16,500 it costs. Sophia's vest was free on our old insurance. What a difference good insurance makes. But at least we have one vest!!

We LOVE the vest. Both of my kids fought treatments and we had to continually chase them down. I have heard that some think manual cpt is better for some people. So I add manual cpt when they get a cold, which thankfully was just once this winter. We visited Dr. Warwick (who invented the vest)in Minneapolis in March. Anyway, his recommendation is for 30 minutes in the morning and 30 minutes in the evening. Our cf center says 20 minutes twice a day.

Our cf center here in Houston, now does a throat culture every office visit (three months). I also brought Jack in monthly to get a throat culture after he showed pseudomonas last year. He went for six months straight and they were all normal, no bacteria after a three month treatment of Tobi. It is good to keep up any new bacteria they culture so you can address it quickly and not wait for the once a year check-up.

They also usually do a chest x-ray on the birthday visit. We live close by the cf center, so I take my kids in a week before their birthday visit to get x-rays, throat cultures and blood work done. That way we can discuss the result at their clinic visit and it doesn't make for such a long day.
Sharon, mom of Sophia, 4 and Jack, 2 next month both with cf

 

[anonymous]

Hi Becky! I think we met during Great Strides (in FW?). Anyway, Sydney (who turned 2 in June) just got her Vest today. She was doing 1 CPT per day that lasted about 15 minutes (that was all she would sit still for) but our goal is to get her to do 30 minutes/day with the vest and eventually do that twice a day. Her chest measured 22 inches-I think that is the smallest vest size they make... She hasn't done any nebs since April but when she needs them again, they can be done with the vest (although I think some meds are better to be done afterwards rather than during??). I haven't heard of the Neonatal Manual Percussors, we just did manual CPT. Sydney thinks the vest is pretty cool and once we get it all figured out I know that we will all LOVE it! As Sharon said, I have also heard that some people like manual better when they have extra congestion.

Sydney just had her bday visit (at Riley) and they did all the usual things (weight, height, throat culture-which they do every 3 months) plus they did bloodwork to check on her nutrition. The normally would do a chest xray but Sydney didn't have this done bc she had a CT Scan done in April. You may also meet with the RT, dietician, social worker etc to discuss how things are going.

Kelli (mom of Sydney 2wcf)

 

[anonymous]

My son is 3yrs old and we were told cpt for 20 mins 3 times a week and to increase if he has a cold. He has never done any breathing treatments and is not on enzymes. They are just doing weight checks and throat cultures every 3-4 months and chest xray yearly. Do you think we should increase pt? It is difficult to get 20 consecutive mins with him unless he is very tired.

 

[anonymous]

My son Brady has CF--he is 4 years old, he was diagnosed when I was 7 months pregnant. He had a blocked bowel which needed surgery at birth, this is how we found out about the CF so early. Brady has had 4 breathing treatments a day since birth. He just got the vest 2 months ago--he is finally big enough. We now do the vest in the morning with albuterol and broncho saline, the vest goes for 20 minutes. He then takes Pulmozyme right after the vest and aeorsal. 4 hours later he has the albuterol again, then pounding with the "bonker" is what we call it for 20 to 25 minutes. 4 hours later the vest again, 20 minutes and 4 hours later the regular pounding. When sick he gets the treatments every 3 hours around the clock. I have found that he seems to get more treatments than others, I don't know if the is common with our hospital or just Bradys situation. He had a very rough start.

Good luck!

 

[anonymous]

Thanks for the reply Sharon!! You must be a very busy woman with two kids with CF! I can barely manage my one child with CF and can't even imagine having two! God bless you!!! I am wondering why they haven't done any throat cultures on my daughter at any of her other clinic visits? It seems like the norm form most everyone posting on this board to get the throat cultures done every vist (or every three months). She has had several colds/infections since then, maybe 3-4 times in the last year, but has been on oral Augmentin each time and recovered nicely. I will definitely be asking why they are not doing the throat cultures. Thanks again for your reply.

Becky

 

[anonymous]

Hi Kelli!! I remember you and your family! We just saw your husband in the parking lot of Jefferson Pointe a few weekends ago! I know you guys go to Riley and we go here in Fort Wayne to Lutheran. I was just wondering why you chose Riley or Lutheran? We absolutely love the staff at the clinic here, the nurses are wonderful and we have Dr. Chowdary and I love him. He also took care of Hayley during her almost 3 week stay in the PICU last June, so we have a special bond with him. I also like the fact that they are here locally and I don't have to drive to Indianapolis. Especially in the future when there are hospitalizations, my husband and I both work FT and it would not be feasible to drive back and forth to Indy. I am concerned about the fact that Hayley has not had a throat culture since she was 3 months old at diagnosis. In fact she really hasn't had any testing at all since we left the hospital. She has been relatively healthy though, about 4 colds/infections in the last year that were treated with oral Augmentin and that cleared it up each time.

I am also curious as to why Sydney doesn't do any neb treatments? I thought that was pretty much the standard for all CF patients to do the neb treatments several times per day even when they aren't sick? I am just really wondering now why things seem so much different at Riley then here at Lutheran? Lutheran is a satellite of Riley and is suppossed to run pretty much the same way. What other testing has Sydney had done at Riley since her diagnosis and are you guys involved in any Clinical Trials? Sorry to ramble on and on!! Oh and I am glad Sydney had fun at the water park!! The pictures were cute! Hayley just loves the water, so I think we will try to visit a park next year!! Anyway, if you would rather e-mail me than post back on the forum, my e-mail is quaintancer15@msn.com at home, but I only read e-mail from home 1-2 times per week (no time with two little ones!!) my e-mail at work is rebecca.quaintance@co.allen.in.us. Hope to hear from you soon!!

Becky

 

[anonymous]

Thanks for you reply!! I know what you mean about it being hard to get the CPT done. I get Hayley out of bed in the morning before she wakes up on her own and she will usually sleep through the nebulizer treatment and the CPT. The afternoon treatment and CPT are the worst and during the week it is her Grandma (my mom) that is home doing the treatment and I know she doesn't get her as good as my husband and I do, so this is why I would really like the vest. My husband does the evening treatment right before bed time and she usually falls asleep during the CPT so he usually gets a really good treatment in, but she is getting harder and harder to keep still, so I am going to kep pushing to get her the vest as soon as she can possibly have it. Thanks again for your relpy!!

Becky

 

[anonymous]

Thanks for you reply!! I know what you mean about it being hard to get the CPT done. I get Hayley out of bed in the morning before she wakes up on her own and she will usually sleep through the nebulizer treatment and the CPT. The afternoon treatment and CPT are the worst and during the week it is her Grandma (my mom) that is home doing the treatment and I know she doesn't get her as good as my husband and I do, so this is why I would really like the vest. My husband does the evening treatment right before bed time and she usually falls asleep during the CPT so he usually gets a really good treatment in, but she is getting harder and harder to keep still, so I am going to kep pushing to get her the vest as soon as she can possibly have it. Thanks again for your relpy!!

Becky

 

[anonymous]

Thanks for yoru reply! So sorry to hear the Brady has had such a rough time! Hope he is doing well now! Thanks again!!!

Becky

 

[anonymous]

Hi Becky, that is too funny that you saw Derek at JP! Small world. Anyway, we are having a big cookout today (it is actually a Team Sydney Wrap Up!) so we are swamped. I will email (hopefully tomorrow) with more info at both of those addresses.

Take Care!
Kelli

 

[anonymous]

My daughter is 12 and she has never "routinely" done nebulizer treatments. She only does them when she is sick or has an asthma flare-up. I asked her physician about this once and he states that the body will build an immunity to the medications (i.e. albuterol) and the meds used in the nebs can stunt growth. She is doing very well and has awesome PFT's.

 

[JazzysMom]

OK...my first question is, Is the doctor who told you this a CF doctor? I dont know if its a true statement or not. All I know is what I know from experience. If nothing else the discipline instilled in your daughter about doing treatments is essential. I was diagnosd at 7 & was a mild case for years. I got away with not doing treatments & now its caught up with me. Please elaborate on the doctors outlook because I am floored.........

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>JazzysMom</b></i><br>OK...my first question is, Is the doctor who told you this a CF doctor? I dont know if its a true statement or not. All I know is what I know from experience. If nothing else the discipline instilled in your daughter about doing treatments is essential. I was diagnosd at 7 & was a mild case for years. I got away with not doing treatments & now its caught up with me. Please elaborate on the doctors outlook because I am floored.........<hr></blockquote>

Melissa, will you remind us what you are referring to here?

Thanks!

 

[JazzysMom]

I was addressing the post from Annonymous whose 12 year old daughter does not do nebulizers on a regular basis. Their doctor states an immunity to the meds (i.e. albuterol) can develop & it stunts growth.

 

[anonymous]

as far as the meds go, longterm irregular use (tobi every few days once a month, not on a consistent 30 day on 30 day off-or similar routine) CAN cause immunity to a medication. It will show up as a resistant, NOT a sensitive medication on a Culture and sensitivity panel. As far a stunting growth, I have to agree with Melissa on this one-is he an ACCREDITED CF doctor?

I must say though, it is not abnormal for a CFer with a somewhat "mild" case of CF to not do nebulizers consistently. Chest PT is important, even if it's just once a day for 10-20 minutes it's necessary for those CF lungs. But if there isn't a pulmonary infection, there is absolutely NO need to use the nebulizer. Matter of fact, my husband Mark NEVER use a nebulizer until he turned 21-except for the Pulmozyme and Tobi trials he was involved in when he was younger but that was only for a few months and his family couldn't afford the medications after the trial so he never used them until he was on my insurance and didn't really need the Tobi until then because Cipro took care of all his pulm. infections, which were like once every 3 years (I believe the pulmozyme would have done him some good though).


Julie (wife to Mark 24 w/CF)

 

[anonymous]

I am the Anonymous with the 12 year old that does not routinely do neb treatments. First of all yes her doctor is a cf specialist, pulmonologist, researcher, and professor and we attend an accredited cf center. His name is Nemr Eid (anyone on here from Kentucky or Indiana) and he is wonderful. Google him sometime to read some of his research on cf and asthma. As far as the neb meds (i.e. albuterol) I guess the term to use would be tolerance rather than immunity to the meds - after time they won't work and the dose will have to be elevated just like any other drugs. Albuterol for one is extremely hard on the heart and there have been alot of fatalities in children related to home use of inhalation albuterol. There is also research that these meds especially used with some of the inhaled steroid meds for asthma can stunt growth.

My daughter is very disciplined with regards to her cf treatment. I never said she didn't do cpt because she does this twice a day in addition to managing her own medications, flushing her nose 4 times daily, setting up nightly gt feedings, and prefers to do her own access and flush of her port monthly. Her cf is not considered a "mild" case whatsoever.

Some doctors opinions on some things differ - but, that doesn't make them wrong. And I don't appreciate the tone or insinuations of your questions.

 

[JazzysMom]

We didnt mean any harm. We just get concerned when things that we know arent the "norm" come up. Sometimes they are not the norm because of the ignorance of the doctor then the patient & family pay for it. Thank you for clarifying things. I am glad to hear that your child is in the care of someone you trust! Sorry for the misunderstanding!

 

[anonymous]

Just for clairification, because I believe this is where the confusion lies: albuterol is an aerolized (SP?) medication whereas TOBI and Pulmozyme are nebulized medications, there is a difference.

Julie

 

[anonymous]

albuterol can be aerolized (inhaler) or nebulized