I just wanted to know from the ones out there that have smaller childern ages 4-8 what is your daily routines like. Do you all do Chest PT and neb treatments? How many time a day do you have to do these. My boys are currently doing chest PT with the vest twice a day, Albuterol and flovent inhalers twice a day, tobi and pulmozyme in the neb, Ultrase enzymes with every meal and snack, peractin for weight gain, ADEK vitamin twice aday. I was just wondering if this was pretty much the same for CF kids or if it varied depending on how severe. My boys are six years old and have been hospitialzed four times within those four years. We currently have PICC lines in but they went for three years since the last outbreak. They have culutred psdeumonas every time they have been hospitialized. I guess I just wanted to know if this sound pretty normal.Mom to twins with CF
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Daily Routines
- Thread starter anonymous
- Start date
My 3 year old (4 in October) son does the vest 3 times a day, 20 minutes each (I think he can go down to 2 times on the vest.. I keep getting unclear/mixed answers from my doctor/nurse so I am just keeping it at 3 times for now). He takes AlbuterolSulfate twice a day via neb and Pulmozyme once a day via neb. He takes 1 Vitamax a day. He takes Prevacid 1 time a day. Flonase 1 time a day. He takes 2 MT 10s with meals. His enzyme dosage may go down however because I think many of his remaining intestinal problems are due to something other than CF (he is being tested for Lactose Intolerance). Right now he is taking Bactrim to clear up an infection (his first). No hospitalizations yet (except for 1 outpatient bronchoscopy). There is some talk about taking him in for a "tune up" if the Bactrim doesn't clear up this area in his lung. He was just diagnosed at 3 years (due to intestinal problems... he never had any chest infections before). This problem area in his lung (which required the bronchoscopy, the daily Pulmozyme treatments, the Bactrim prescription, and the potential "tune up") has been there since his diagnosis. Had he been diagnosed earlier, he probably wouldn't have any lung problems (right now) and we would be just looking at prevention (with the vest, nebs with Albuterol, and of course enzymes and vitamins).Darlamom to Jared 3 1/2 with CF and Lilly 5 mo. no CF
My 4 year old does chest PT twice a day for 12 mins each session. She does not use a nebulizer or mask. She takes Cotazym 4 with meals and snacks, Prevacid 1x/day for acid reflux, Bacid (probiotic) 3x's/day, and ADEK drops 1x/day. For the first 2 yrs of live she was on Septra 2 or 3 x's per day as a precautionary measure. She is now 4 and I still don't know if I agree with the constant use of antibiotics, but she has never been hospitalized and is doing very well.I correspond with other CF parents and treatments seem to depend not only on the severity but also in the area you live in or the hospital you are treated at. Each CF team has similar but different approaches so it is tough to compare your child to other CF children.
Thanks for your post. I guess you are right it really depends on the individual child and their DR.Our biggest hurdel right now is weight gain. I am about to pull my hair out to get some weight on these two. They only weigh 35 pounds at age six and our doctor really stresses this at each appointment. Any ideas on weight gain I would love to hear it. Thanks for your post.Mom to twins with CF!
Weight gain is an issue for us as well. Our 4 year old weighs 32 lbs but has not gained anything in many months. Here is my opinion...when I gave her the high fat she was gaining weight, but the difference was a few grams. Today we give her healthy foods and have omitted all of the extra fat. She no longer has stomach pains, her respiratory, ear and sinus infections are almost nil, and she is gaining in height (finally). I no longer stress about the weight gain because it stresses my child. She will be tiny, and that is ok because that is who she is. I cannot stretch her body to make her grow and I refuse to force feed her to please anyone else. She is not starving to death and certainly does not look unhealthy. If we stress our children stress and stop liking meal times and food. I had her at a regular pediatrician appt today and she is slowly gaining weight again. She is happier and healthier since I stopped stressing about the weight gain and adding all the extras to her diet; which only made her feel sick all the time.I agree if their are obvious problems with the stools then they need to be addressed and that a change in the enzymes is necessary. On the other side if you reduce some of the fat in their diet their stools may improve and they may actually keep some of the healthy food in their systems and grow.Just my opinion, and I hope you find the solution to your own issues.
NoDayButToday
New member
When I was that age, I pretty much had the same routine, except I did albuterol by nebulizer and not just with an inhaler. I struggled with weight gain from the time I cultured pseudomonas at about 4-5 years of age, and then it plateaued (sp?) in about 4th or 5th grade. I recently got a feeding tube after much debate/hesistancy, and although it is an extreme decision, I have nothing but good things to say about. I'm not saying this is the right idea for your sons, I'm just sharing the general story of my weight struggles.