Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Angie, Abriana had good luck with Alimentum and Bradyn with Good Start formula. Of course they both were breastfed also, Abriana for 6 mos. and Bradyn for 19 mos. So the formula was used after that time, or to mix with cereal etc. They had to use enzymes with these though. Pregestimil is commonly used, and easier to digest, but I have never seen it in stores. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 >Is there a reason why she can't breastfeed. Breastmilk is easier to digest >than formula. It will also provide the antibodies to fight off infections >easier which is so important in cf babies. Just an idea. I just want to add that she still may need enzymes though. Both of my kids did. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Breastfeeding is the best thing for a cf baby they need all the extra immunities they can get and it is the easiest to digest some babies do need pancreas pills to help digest even breastmilk. These are some formulas Pregestimil. Nutramigin .and to add extra calories Polycose.BeckyB. Mommy to 8 kids 2 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Angie, Is there a reason why she can't breastfeed. Breastmilk is easier to digest than formula. It will also provide the antibodies to fight off infections easier which is so important in cf babies. Just an idea. Angie in FL (mom to JC 7 months wcf) formula > I am wondering which formula the families use with their cf babies. > My first cousin's newborn may have cf and they are having trouble > finding a formula the baby can handle. I am sure the Dr. will > suggest > something but they are coming to us for advice and I would like to > give them a suggestion. > > They have gotten some test results back and have found out that the > pancreas is involved. Her sweat test was negative but with my son > having a negative sweat test, they decided to pursue the genetic > testing. Hopefully, this week they will get the genetic testing > back. The dr. wants to admit the baby this week to do further tests. > > Does anyone else have relatives with CF? I know Jen and Ron have a > neice. This has been a shock to the family, to possibly have 2 > cousins have kids with cf. My uncles refused to get tested. My mom > got tested and that is how we found out that my dad is the carrier. > I > have another cousin who had a baby is August, five days before this > one. I kept asking her if she planned to get the kids tested, I > figured her insurance would pay for it because of the family history. > (The test cost $300 if a doctor won't refer it). She finally told > me to back off, I had done all I could do and the rest was up to the > individual families. We'll see what happens if her neice has cf, if > she gets herself tested or not. > > Take care everyone, Angie from MN. Mom to 2 1/2 wcf and 2nd > cousin to , almost 8 weeks, dx pending > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Lactation can be resumed or restarted there are LaLeche leagues that will help and some doctors will prescribe meds to help milk. I can personally say that feenugreek 2 capsules 3 times a day (can be bought at larger drug stores,pharmacies,and health food stores) helped when Rebekah had surgery and couldn't nurse for 21 days. There is a mother's tea made of the same thing that helps produce milk. I hope this helps there are helpers that Medela sells called SNS supplemental nursing system some adoptive mothers have used to have milk for their adopted baby. Also there are some other things that I can copy and send off list, sites, info on helping moms nurse. Becky B., NY State WIC Certified Breastfeeding Peer Counselor Successfully Breastfed 8 kids and still nursing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 The baby is almost 8 weeks old and they are not breastfeeding. Is it too late to start? I breastfed and he needed enymzes also. We did it for 9 months to the day. He was down to once a day, he was ready to be done at 7 months but wasn't!! Thanks for all the advice. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 It may not be too late, though a lot would depend on whether she really wanted to breastfeed. Tell her to contact a local La Leche leader or write me separately and I'll try and find one for her. Lori in Florida grosehsd@... Re: formula > The baby is almost 8 weeks old and they are not breastfeeding. Is it > too late to start? > > I breastfed and he needed enymzes also. We did it for 9 > months > to the day. He was down to once a day, he was ready to be done at 7 > months but wasn't!! > > Thanks for all the advice. Angie > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Hello Angie, s cf docs put him on Alimentum, which he did wonderful on because it was predigested. Hope all goes well with Meagan, I know this is a hard time for her parents right now. Hope all is well with also. , mommy of 4, 1wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 When my son was born and was diagnosed immediately, he was put on Neocare, by Ross Pharmaceuticals -- high in salt and easy to digest. (Downside being it is hard to find!) Best of luck. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 This is a really great idea. But somehow I don't think it isn't one they've already thought of and for whatever reason still solicited our " Advice " on formula. . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Aimee used Pregestimil till she was 12 months old, that stuff was expensive, and insurance did not cover it. No one in my family would get tested either, my husband and I were. I'm delta 508 and they couldn't locate his mutation. Kathy remember the best vitamin for friendship is B1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 If you contact the pharmaceutical sometimes the will ship you a case of two. Hope this helps. Kathy remember the best vitamin for friendship is B1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 > I am wondering which formula the families use with their cf babies. > My first cousin's newborn may have cf and they are having trouble > finding a formula the baby can handle. I am sure the Dr. will > suggest > something but they are coming to us for advice and I would like to > give them a suggestion. > > They have gotten some test results back and have found out that the > pancreas is involved. Her sweat test was negative but with my son > having a negative sweat test, they decided to pursue the genetic > testing. Hopefully, this week they will get the genetic testing > back. The dr. wants to admit the baby this week to do further tests. > > Does anyone else have relatives with CF? I know Jen and Ron have a > neice. This has been a shock to the family, to possibly have 2 > cousins have kids with cf. My uncles refused to get tested. My mom > got tested and that is how we found out that my dad is the carrier. > I > have another cousin who had a baby is August, five days before this > one. I kept asking her if she planned to get the kids tested, I > figured her insurance would pay for it because of the family history. > (The test cost $300 if a doctor won't refer it). She finally told > me to back off, I had done all I could do and the rest was up to the > individual families. We'll see what happens if her neice has cf, if > she gets herself tested or not. > > Take care everyone, Angie from MN. Mom to 2 1/2 wcf and 2nd > cousin to , almost 8 weeks, dx pending Angie my 8 mos son is on pregestamil. it is rather expensive ans hard to find. we have only been able to find it at walgreens 25 dollars for a 1lb can. It has done the trick i tried breastfeeding but he was in the hospital for 7 weeks and didn't get to nurse so when i tried he wouldn't do it. I tried feeding him pumped milk but he couldn't digest it. We get help with the formula through WIC and our cf clinic. hope this helps. mom of Breanna 8yowocf and NOah 8 mos wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Sorry I was unclear -- my beautiful, bouncing, " baby " boy is now 2.5 years old, weighing in at 34 lbs 9 oz. and in the 75th percentile for height. So it seems like the breastmilk-supplemented Neocare worked just fine!!! (But now we give him regular old milk!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 I can get that if you can't find thru your own source.it might be you can qualify for compassion program also. Call me if you cant locate on web. 1- LOVE & HUGS, grandmomBEV Re: formula When my son was born and was diagnosed immediately, he was put on Neocare, by Ross Pharmaceuticals -- high in salt and easy to digest. (Downside being it is hard to find!) Best of luck. Kathleen *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2000 Report Share Posted October 23, 2000 Hi Angie, Fiona still lives on a formula from Nestle, just plain formula and nothing of the expensive predigested or antiallergic stuff. The problem we saw and many on this list had is, that CF-babies sometimes have a tendency to toss their cookies, LOL. I think it has to do with the slow digestion and the larger amounts of gas in the stomach. Fiona outgrew this problem, when she turned two. My cousin has a daughter with CF too. The girl is 16 and extremely healthy. No lung involvement so far, just a dozen of sinus surgeries. Bye-bye Torsten, dad of Fiona 3.5wcf e-mail: aberdeen95@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 My son, , was pue on lactose free. He wasn't lactose intolerant, but it was more gentle on his tummy. mom of 15mo wcf and Brenna 5yrs wocf >From: lawheeler@... >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: formula >Date: Sun, 22 Oct 2000 18:13:05 -0000 > >I am wondering which formula the families use with their cf babies. >My first cousin's newborn may have cf and they are having trouble >finding a formula the baby can handle. I am sure the Dr. will >suggest >something but they are coming to us for advice and I would like to >give them a suggestion. > >They have gotten some test results back and have found out that the >pancreas is involved. Her sweat test was negative but with my son >having a negative sweat test, they decided to pursue the genetic >testing. Hopefully, this week they will get the genetic testing >back. The dr. wants to admit the baby this week to do further tests. > >Does anyone else have relatives with CF? I know Jen and Ron have a >neice. This has been a shock to the family, to possibly have 2 >cousins have kids with cf. My uncles refused to get tested. My mom >got tested and that is how we found out that my dad is the carrier. >I >have another cousin who had a baby is August, five days before this >one. I kept asking her if she planned to get the kids tested, I >figured her insurance would pay for it because of the family history. > (The test cost $300 if a doctor won't refer it). She finally told >me to back off, I had done all I could do and the rest was up to the >individual families. We'll see what happens if her neice has cf, if >she gets herself tested or not. > >Take care everyone, Angie from MN. Mom to 2 1/2 wcf and 2nd >cousin to , almost 8 weeks, dx pending > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Hi I am so glad that my son didn't 'toss his cookies' as you put it! LOL The smell drives me to distraction. Thanks everyone for all your input on formula, I hope this will help my cousin. Still no news on dx. Angie > Hi Angie, > > Fiona still lives on a formula from Nestle, just plain formula and nothing of > the expensive predigested or antiallergic stuff. The problem we saw and many on > this list had is, that CF-babies sometimes have a tendency to toss their > cookies, LOL. I think it has to do with the slow digestion and the larger > amounts of gas in the stomach. Fiona outgrew this problem, when she turned two. > > My cousin has a daughter with CF too. The girl is 16 and extremely healthy. No > lung involvement so far, just a dozen of sinus surgeries. > > > > > > Bye-bye > Torsten, dad of Fiona 3.5wcf > e-mail: aberdeen95@t... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Hi, The only thing that worked for our little girl was Peptamen Jr. from Nestle'. We got it free through the company to :-). Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 I am having a real problem with Jack (2wks old). I am nursing and he is very gassy and ALWAYS hungry even if I nurse for almost an hour. When I give him a bottle of formula he has a BM right after it (within mins) and then goes right to sleep. He never sleeps after nursing unless it is on top of me and I am burping him. Is it me or does it seem like he is having a hard time digesting. The Mylacon drops are not making any difference. I am also watching EVERYTHING I eat and drink! We go on Friday to the peds for a check up I am scared there may not be a weight increase. We still have not found out if he carries my gene. Maybe I am just getting hormonal and jumping the gun. Meg Mom of Maureen 10yowcf, Kate 5yowocf & Jack 2wks old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Kathy I am deltaf508 and they can't identify my husbands gene either. Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 I think you are jumping the gun, too. In all likelihood, you just haven't hit your stride yet with the nursing -- which, as I understand it, doesn't happen until around 4 weeks (I bet your nipples are at their height of soreness now, too). The actual process of nursing is more work than a bottle -- maybe you should think about pumping your breast milk into a bottle AND nursing. This way Jack gets all breastmilk and it helps your milk get established -- which will help your nursing. Hang in there. The odds are in your favor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Maureen, My daughter is 3wcf. I breast feed her until she was 19months. I had to stop as they said by that stage she wasnt getting any calories from breast milk. But for the first 6 mths I feed her every two hours. I never seemed to go anywhere without having to stop to feed. Thats because she was hungry and needed the calories. But by 6 mths they increased her pancrease from 1/2 to a whole one and this helped alot. It's just getting it all right which for our daughter was a new experience. She's never had a weight problem except now they sas she hasnt put weight on in the last 3 mths, although she does weigh 15kg's and turned 3 end of Aug. so that doesnt seem to bad to me, but then Im not sure what cf 3 year olds should weigh. Keep persisiting I found breast feeding got better after a few weeks and then I loved it, in fact I was terribly upset when the dr.'s suggest I put her on formula to extra calories and although she was nearly 2 I felt a lose at being forces to stop. Take care Re: formula I am having a real problem with Jack (2wks old). I am nursing and he is very gassy and ALWAYS hungry even if I nurse for almost an hour. When I give him a bottle of formula he has a BM right after it (within mins) and then goes right to sleep. He never sleeps after nursing unless it is on top of me and I am burping him. Is it me or does it seem like he is having a hard time digesting. The Mylacon drops are not making any difference. I am also watching EVERYTHING I eat and drink! We go on Friday to the peds for a check up I am scared there may not be a weight increase. We still have not found out if he carries my gene. Maybe I am just getting hormonal and jumping the gun. Meg Mom of Maureen 10yowcf, Kate 5yowocf & Jack 2wks old eGroups Sponsor *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Meg ph did this, too. He also pooped like 20+ times a day.... but then, if memory serves me right, so did Miranda and , and they do not have CF. Breastfed babies are gassy, poop alot, and like to eat alot, or at least in my experience.... hang in there...... remembering the last 17 months right along with you! Jen Quote Link to comment Share on other sites More sharing options...
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