Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi Katy, I cant honestly say what s caloric intake is, it isnt that great for the most part though. He has been on Petamen Jr. for almost 2 years, has tolerated it really good, and it has helped with the weight gain. He only takes it via his g-tube, I tried once to fool him with it when we ran out of Boost, he knew and handed it back and told me it wasnt the right boost. Oh well, I tried. Hope Piper does well with this, (by the way, I love her name) Take care, , mommy of 4, almost 4 wCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi all!!! Today Piper's doc once again switched her formula. He has now added Peptamen 1.5 as another supplement. Has anyone heard of or had their kids on this? Just wondering how it worked for them. It's pretty caloric, and so far she hasn't been able to tolerate anything that is high calorie, I think that 34 cal/oz is her max. Also, for those of you with younger kids (15 months & younger) what are your kids daily calorie intake? Just curious. Thanks, Katy Mom to Austin 4 no CF & Piper 1 w/CF CF Awareness Week October 12-18th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 YES, It is a very popular brand & seems to do well on it .best wishes, LOVE & HUGS, grandmomBEV Peptamen 1.5.......?? Hi all!!! Today Piper's doc once again switched her formula. He has now added Peptamen 1.5 as another supplement. Has anyone heard of or had their kids on this? Just wondering how it worked for them. It's pretty caloric, and so far she hasn't been able to tolerate anything that is high calorie, I think that 34 cal/oz is her max. Also, for those of you with younger kids (15 months & younger) what are your kids daily calorie intake? Just curious. Thanks, Katy Mom to Austin 4 no CF & Piper 1 w/CF CF Awareness Week October 12-18th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Hi, gets Peptamin 1.5 through her g-tube. It has worked well. Will Piper be drinking it? has never had the " flavored " kind. Only the unflavored through the tube. Peptamen 1.5.......?? Hi all!!! Today Piper's doc once again switched her formula. He has now added Peptamen 1.5 as another supplement. Has anyone heard of or had their kids on this? Just wondering how it worked for them. It's pretty caloric, and so far she hasn't been able to tolerate anything that is high calorie, I think that 34 cal/oz is her max. Also, for those of you with younger kids (15 months & younger) what are your kids daily calorie intake? Just curious. Thanks, Katy Mom to Austin 4 no CF & Piper 1 w/CF CF Awareness Week October 12-18th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Ashton is on Peptamen Jr and it is 30 cals/oz. He doesn't drink it, it only goes in through his g-tube. We add rice cereal to it to boost calories.My son is 27 months old (should be 24.5) and he is supposed to have 1550 cals. > Hi all!!! > > Today Piper's doc once again switched her formula. He has now added > Peptamen 1.5 as another supplement. Has anyone heard of or had their > kids on this? Just wondering how it worked for them. It's pretty > caloric, and so far she hasn't been able to tolerate anything that is high > calorie, I think that 34 cal/oz is her max. > > Also, for those of you with younger kids (15 months & younger) what are > your kids daily calorie intake? Just curious. > > Thanks, > > > > Katy > Mom to Austin 4 no CF & Piper 1 w/CF > CF Awareness Week October 12-18th > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Dallas used Peptamin Junior. It was fantastic. He gained so well while he was on it. It was also the only formula he could tolerate. It was predigested, but he still needed enzymes with it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 > Also, for those of you with younger kids (15 months & younger) what are > your kids daily calorie intake? Just curious. is 14 months now and he's taking in at least 1000 calories per day. He drinks around 16-20 ounces of whole milk per day; 8 ounces of scandi-shake mixed w/an additional 8 ounces of whole milk, sometimes we sneak in another ounce or two of heavy cream which is loaded with calories and fat. He eats breakfast, lunch and dinner, a combination of stage 3 foods (he just got his 3rd tooth) and " big people " food like cheeses, cookies, pizza, cereal, pudding etc... For the most part he's a fabulous eater, except when he doesn't feel good. He only weighs about 20 pounds, he was 19 1/2 #'s about a month and a half ago, so I can't tell you his exact weight at this point. Since that time we've been really pumping the calories in. He goes back August 12th for his check up. He's been going every month since he came home from the hospital! They're just concerned about his weight which I'm thankful for their caution. All in all he's gained 15 pounds in his first year so I think that's really good. So anyway, sorry to babble on and on. Hope this helps..... Michele B mom to Matt 14 months/CF & Mikailah almost 6/no CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 , Thanks for the info. So far Piper seems to be tolerating it really well. We give it to her through her tube also so taste isn't a factor. We go back on August 7 for another weight check so I guess only time will tell if it helped. But since she has been on it, her stools are less frequent and actually " normal " !!! Katy mom to Austin 4 no CF & Piper 1 yr w/CF jacesjoggers@... wrote: Hi Katy, I cant honestly say what s caloric intake is, it isnt that great for the most part though. He has been on Petamen Jr. for almost 2 years, has tolerated it really good, and it has helped with the weight gain. He only takes it via his g-tube, I tried once to fool him with it when we ran out of Boost, he knew and handed it back and told me it wasnt the right boost. Oh well, I tried. Hope Piper does well with this, (by the way, I love her name) Take care, , mommy of 4, almost 4 wCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Marie, We tried the concentrated formula with Piper as well as adding cereal, and it didn't really do very good for her. So far the Peptamen is working well, I don't know weight wise if it is good, but everything else is so far. I hope that everything works out for you and your little one. Katy mom to Austin 4 no CF & Piper 1 yr w/CF QUEENBMALYNN@... wrote: My 5 mo old is currently on Alimentum and we are concentrating the formula (just started this week while in Hosp) to 24 cal/oz. He gained one pound in hosp but we are watching to see if this helps he also takes his formula loaded with cereal about 2 teaspoons per oz. Please keep me informed as to how the suplement works - would like to keep it in mind. Marie mom of 3 youngest with cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 katy, Thanks for the response. We went to nutritionist on Friday and she wants to concentrate even more to 27 cal but we are gonna finish antiobiotics first so he wont have another diarrehea prob. She also wants to up his creon but gotta check with pulmo next week. Am I the only one NOT going to a CF clinic and is clinic much better or just more convenient? I never knew anything about a CF clinic until this group and my Ped had already sent us to this pulmo bvefore he was diagnosed. Should I be looking at a clinic? Still learning and researching Marie mom of 3 youngest 5mo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 , My sons liver function was a little elevated at diagnosis but as of last week it is at normal levels thanks to the Actigall that he takes. Luckily both my Pulmo and the Gastr/Nutritionist work closely together and they seem up to date on everything that ive seen. Dr Mavounda (the pulmo) is very agressive (she says) and has him on a lot of different meds trying to get a handle on what he needs. He has digestion problems too which is why the Alimentum. I just love both of them and am very happy with their techniques but I know I have to consider what will be best for in the long run. Still considering my options and thanks for letting me know where to look. Will check it out later. Marie, mom of 3 youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Marie, I know that the CF clinic we go to pretty much covers everything with Piper. She still has a ped but even the ped thinks that Piper primarily needs to be seen by the CF clinic. Through the clinic, Piper see's a dietitian, a respiratory therapist, and a pulmo doc. They manage everything with Piper's care. I know that I am more comfortable seeing the CF doc, just because they are more informed on new stuff with CF since they deal with it on a daily basis. Hope this helps!!! Katy Mom to Austin 4 no CF & Piper 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 I would highly recommend going to a CF clinic. you can find your local clinic (if you are in the US) by going to www.cff.org At a CF clinic, they treat the entire disease--lungs, digestion, psychological effects, etc. They are a one stop shop and hopefully are experts in the area of CF. A pulmonologist may not know about the effects of certain antibiotics on the GI system or that the liver is affected by CF is some cases (like my son). hope this info helps. Ashton 2 yrs old wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Yes, they stay up with ALL research & attend all CF special conference & converse with many (3000) others that deal with CF daily .All clinics clinicians attend or at least the most ...those that don't go----get in serviced upon the other team members returns. YES, Your doctor is most likely right on top of this & it sounds like she is certainly trying. BUT-the clinic will cover all parts . I know many who do not go & they are fine .It is YOUR choice. We really recommend the clinics tho..as they are centered on CF (they also do other patients so do have a wide source of info . Bless you . Take care LOVE & HUGS< grandmomBEV Fwd: Peptamen 1.5.......?? katy, Thanks for the response. We went to nutritionist on Friday and she wants to concentrate even more to 27 cal but we are gonna finish antiobiotics first so he wont have another diarrehea prob. She also wants to up his creon but gotta check with pulmo next week. Am I the only one NOT going to a CF clinic and is clinic much better or just more convenient? I never knew anything about a CF clinic until this group and my Ped had already sent us to this pulmo bvefore he was diagnosed. Should I be looking at a clinic? Still learning and researching Marie mom of 3 youngest 5mo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 The doctor you are going to had been a member of an excellent CF Clinic .........long in year past as the best. Dr Mauvanda is wonderful person as well. She was with the Miami Univ. CF Center with Dr Mckee for years, then with Dr Swartzman in Hollywood, FL. for some time too. She is excellent & does keep up with all .even in private practice.......I believe she has been in CF world for at least 15 years....... You might want to do both .if you would feel better .....I didn't know which Dr you were seeing from your first post :) Best wishes to you ........... LOVE & HUGS, GrandmomBEV Re: Peptamen 1.5.......?? , My sons liver function was a little elevated at diagnosis but as of last week it is at normal levels thanks to the Actigall that he takes. Luckily both my Pulmo and the Gastr/Nutritionist work closely together and they seem up to date on everything that ive seen. Dr Mavounda (the pulmo) is very agressive (she says) and has him on a lot of different meds trying to get a handle on what he needs. He has digestion problems too which is why the Alimentum. I just love both of them and am very happy with their techniques but I know I have to consider what will be best for in the long run. Still considering my options and thanks for letting me know where to look. Will check it out later. Marie, mom of 3 youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Marie, You should probably consider going to a CF clinic. Look into what is near you. If there are CF clinics nearby you might find it just more convenient to go there rather than run to different places. When we go to CF clinic, always sees the Pulmo Doc, but she also could see a GI doc who specializes in CF, a Nutritionist and/or Dietician-who also specializes in CF. Also, since it is their specialty, they do tend to know more about CF than anyone else. She also is given the opportunity to participate in studies. Of course, if going to a CF clinic means traveling for several hours and it would be very difficult on you and your family, you would have to weigh your options. Go to www.CFF.org to look into clinics. Hope this helps! Fwd: Peptamen 1.5.......?? katy, Thanks for the response. We went to nutritionist on Friday and she wants to concentrate even more to 27 cal but we are gonna finish antiobiotics first so he wont have another diarrehea prob. She also wants to up his creon but gotta check with pulmo next week. Am I the only one NOT going to a CF clinic and is clinic much better or just more convenient? I never knew anything about a CF clinic until this group and my Ped had already sent us to this pulmo bvefore he was diagnosed. Should I be looking at a clinic? Still learning and researching Marie mom of 3 youngest 5mo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Marie, Where are you located?......In Florida?? I believe you are. I know all the cf Clinics here VERY well You may give me a call at 1- if you'd like . I am in Orlando, FL. My granddaughter has CF & is almost 19 (August 3rd. ) LOVE & HUGS, grandmomBEV Re: Peptamen 1.5.......?? Marie, You should probably consider going to a CF clinic. Look into what is near you. If there are CF clinics nearby you might find it just more convenient to go there rather than run to different places. When we go to CF clinic, always sees the Pulmo Doc, but she also could see a GI doc who specializes in CF, a Nutritionist and/or Dietician-who also specializes in CF. Also, since it is their specialty, they do tend to know more about CF than anyone else. She also is given the opportunity to participate in studies. Of course, if going to a CF clinic means traveling for several hours and it would be very difficult on you and your family, you would have to weigh your options. Go to www.CFF.org to look into clinics. Hope this helps! Fwd: Peptamen 1.5.......?? katy, Thanks for the response. We went to nutritionist on Friday and she wants to concentrate even more to 27 cal but we are gonna finish antiobiotics first so he wont have another diarrehea prob. She also wants to up his creon but gotta check with pulmo next week. Am I the only one NOT going to a CF clinic and is clinic much better or just more convenient? I never knew anything about a CF clinic until this group and my Ped had already sent us to this pulmo bvefore he was diagnosed. Should I be looking at a clinic? Still learning and researching Marie mom of 3 youngest 5mo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 I would definately reccomend going to a CF Clinic. It's sort of a one stop shop, and all the people involved in your childs care are there. It's not only convenient for you, but also allows the team to discuss your child's case. Our clinic is every second Tuesday. Before clinic begins, the entire team meets to discuss that day's patients. Tomorrow is Dallas clinic day. He typically goes every 3-4 months. His appt. will likely consist of: 1: Breathing tests in the lab 2: Weight and height taken by nurse or diatician, followed by discussion with dietician about his enzymes and any concerns. 3: Discussion with nurse clinician about meds and any questions I have for her or the doctors 4. Doctor checks him out and answers any questions. 5. Talk to the social worker, physiotherapist and child life specialist about any concerns. The social worker helps with everything from emotional problems dealing with the disease, to finding parents to talk to to helping filling out forms and insurance claims. The child life specialist is there just to make the family's life a little easier. They have activities for the kids..including siblings, and just chat with the parents. Then Dallas will see his GI if he needs to, and have any bloodwork done. He also has his xrays done there once a year. When he was first diagnosed the team also had a occupational therapist come in to see him, because of relfux problems. A lot of times in clinics you'll also get free materials and info that you wouldn't get from your regular doctor, because they are just supplied to clinics. Good luck in your search for the right one if you decide to go that route! Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Carla, How long is a typical clinic visit if you see so many people? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 It usually takes an hour. Sadly it takes 2 hours to get there..lol > Carla, How long is a typical clinic visit if you see so many people? > > Marie > > > Quote Link to comment Share on other sites More sharing options...
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