Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Barry, When was Harry born? Jack is also 11 weeks old born on 10/19/00 with CF also! How much does he weigh? Jack is just about 12lbs, maybe a little over. I also have a 5 year old without CF and a 10 year old with CF. Sounds like your family is somewhat like mine! Meg Mom of 3 Moe 10yowcf, Kate 5yowocf & Jack infant wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 , takes 8 capsules of Pancrecarb MS-8 which are buffered and have the coating on them so they wont work until they are in the intestine and that way he gets the most use out of the food. the other enzymes he was on were not buffered and i feel it makes a huge difference. there's no grease, no odor, never i don't want to sound sick but the only way to tell if he is getting the proper amount of enzymes is if it loose or hard. The drs told us to never open them and put right in the mouth to find an alternate way of getting him to eat them. and if you crush them , the coating is lost and as soon as you ingest them they are working , in the wrong place. Chris mom of 3 brandon 12 1/2 yrs yes he makes me say the 1/2 because he is almost 13 On Wed, 03 Jan 2001 20:15:18 +1030, cfparentsegroups wrote: > > > Yes we were told that the coating on the capsules were some sort of stuff > that wont digest in ths stomach but will do so in the pancrease over 30 > minutes. > > > enzymes > > > > > > > > > > Well, I just want to add that we have always just opened the capsules > > > (Creon) and dumped the beads in Mycah's mouth. That is the way her > > doctor > > > taught us to do it. You do have to be careful to wash them down. She > > seems > > > to be doing well and is growing--she's almost four. I look forward to > > her > > > swallowing them whole, but until then I am thankful not to have to deal > > with > > > dragging applesauce around with me. It was especially easy when she > was > > > nursing. I would have hated to get out of bed and had to go the > kitchen > > in > > > the middle of the night for applesauce. Yikes! Anyway, in case anyone > > is > > > doing it this way, I just wanted to add that it has worked for us and > > Mycah > > > has never had any mouth sores. > > > > > > > > Lori in Florida > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 do you go into childrens hospital in pittsburgh. that is where we went for 10 years. until DR.FINDER misdiagnosed my son,brandon. have you ever told the team you open the capsules into his mouth. after the misdiagnosis we decided to start going to town WVU.drs are great ! chris mom of 3 brandon 12 1/2 yrs On Wed, 3 Jan 2001 16:20:23 EST, cfparentsegroups wrote: > re enzymes. us neither here in pittsburgh, pa. patrick is 8 months old and > did the applesauce routine for about a month then we started dumping them in > his mouth. he does like to spit some out so we give a little extra but for us > it works. > > love to all, > > doug and kathy stanley and patrick w/cf _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 do you see Dr Moffett? We go to morgantown dr too!! Are you from around the area? Tammy, mom of 6yrs.w/cf Re: enzymes > do you go into childrens hospital in pittsburgh. > that is where we went for 10 years. until DR.FINDER misdiagnosed my > son,brandon. > have you ever told the team you open the capsules into his mouth. > after the misdiagnosis we decided to start going to town WVU.drs are > great ! > chris > mom of 3 > brandon 12 1/2 yrs > > On Wed, 3 Jan 2001 16:20:23 EST, cfparentsegroups wrote: > > > re enzymes. us neither here in pittsburgh, pa. patrick is 8 months old > and > > did the applesauce routine for about a month then we started dumping them > in > > his mouth. he does like to spit some out so we give a little extra but > for us > > it works. > > > > love to all, > > > > doug and kathy stanley and patrick w/cf > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ > > > > *********************** > 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 January 4, 2001 Report Share Posted January 4, 2001 Meg, Harry was born on the 18th of October and weighs about 5 kilograms (11 pounds). He was on the bottom of the weight chart but since the dietician added maxijule to his feed he seems to be picking up a bit and is now just above the 9th percentile. I also have a Jack who is 5 years old without cf Barry Re: enzymes Barry, When was Harry born? Jack is also 11 weeks old born on 10/19/00 with CF also! How much does he weigh? Jack is just about 12lbs, maybe a little over. I also have a 5 year old without CF and a 10 year old with CF. Sounds like your family is somewhat like mine! Meg Mom of 3 Moe 10yowcf, Kate 5yowocf & Jack infant wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 we have gone to childrens since we found out when patrick was two weeks old. we always deal with dr. orenstein and dr. festa mostly. my wife had a run in with dr. finder one time. its lucky for him i wasn't there at the time. patrick had been screaming for pretty much 3 days, wouldn't sleep, etc. this doctor told her that he was " bored " . after i got done laughing histerically i was very angry. we love childrens in pgh and the cf group that is there. dr. o is very agressive and he is the leader of the team at pgh. doug and kathy stanley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Barry, When was Harry Diagnosed? My Jack was 4 weeks. My oldest also has CF so we were looking since day one. Meg Mom of 3 Moe 10yowcf, Kate 5yowocf & Jack infant wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Well, Chris; I think ythe question was whether a person would just retain fluid from drinking water and hold onto water as opposed to gaining actual muscle and/or fat. It seems to me that if one's sodium/potassium chloride excretion rate (the " sweat test " ) is very high, this would be less likely to be a problem; if one was one of the relatively rare cfers whose sweat chloride excretion test reveals a score of, say, 40 (and one is therefore holding onto much water in one's body), as oppo- sed to my own which is 175 and up, where one becomes dehydrated easily, these things would make a difference in whether one retained or lost fluid. I'm probably just making this ever less clear, but I tried, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Hi we attend a rather small cf-center here in Germany. Before and after Fiona was dxed, her eating was an absolute nightmare and we would never know, how much she would eat. That's why we started to give the enzymes after the meal. And since she never had any problems with this, we never changed it. And Fiona takes Creon. One of the advantages of Creon is, that the beads are not equal in size and therefore have a different sinking velocity in the stomach. That should result in a good dispersion. It seems to work like that with Fiona. You are basically right about the crushing of the beads in the mouth and we keep telling Fiona not to chew the beads (this kid almost doesn't chew at all BUT the enzymes, grrrr). But I am not too worried. As Leon said, 15 years ago there were no enteric coatings and the Viocase worked too. And the saliva contains enzymes too, therefore the mouth should be slightly resistant to enzymes. We just make sure that Fiona takes a great sip of tea after the beads. I am not much into vitamins and herbs too. We leave the vitamins to the docs. Fiona gets a big bloodwork done once a year, where all her vitamin levels are checked. We only add D and E at the moment. Fiona drinks half a pint of herbal tea a day (fennel, anise, caraway and coriander (sp??)), which helps to reduce the gas in her intestines. We made a short try with lavender inhalation in November, but we stopped when Fiona produced lots of bad looking mucus from her sinuses. I don't know, whether that was a reaction to the lavender or a coincidence. Maybe it was old stuff, which came loose due to the lavender inhalation. Then it would have been a great result. But we stopped after two or three weeks and now that Fiona is healthy again we are not in the mood to start it again. I think that your hubby is right about the guessing game. And I am glad that I can have an open discussion with our docs about their line of thinking. 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 January 7, 2001 Report Share Posted January 7, 2001 Torsten, We were always told as I think most people were. that emzymes are to be given at the start and half way through the meal to help with digestion. What made you try a different approach, was it better for your situation. Re: Enzymes > Hi > > we attend a rather small cf-center here in Germany. Before and after Fiona was > dxed, her eating was an absolute nightmare and we would never know, how much she > would eat. That's why we started to give the enzymes after the meal. And since > she never had any problems with this, we never changed it. > > And Fiona takes Creon. One of the advantages of Creon is, that the beads are not > equal in size and therefore have a different sinking velocity in the stomach. > That should result in a good dispersion. It seems to work like that with Fiona. > > You are basically right about the crushing of the beads in the mouth and we keep > telling Fiona not to chew the beads (this kid almost doesn't chew at all BUT the > enzymes, grrrr). But I am not too worried. As Leon said, 15 years ago there were > no enteric coatings and the Viocase worked too. And the saliva contains enzymes > too, therefore the mouth should be slightly resistant to enzymes. We just make > sure that Fiona takes a great sip of tea after the beads. > > I am not much into vitamins and herbs too. We leave the vitamins to the docs. > Fiona gets a big bloodwork done once a year, where all her vitamin levels are > checked. We only add D and E at the moment. > Fiona drinks half a pint of herbal tea a day (fennel, anise, caraway and > coriander (sp??)), which helps to reduce the gas in her intestines. > > We made a short try with lavender inhalation in November, but we stopped when > Fiona produced lots of bad looking mucus from her sinuses. I don't know, whether > that was a reaction to the lavender or a coincidence. Maybe it was old stuff, > which came loose due to the lavender inhalation. Then it would have been a great > result. But we stopped after two or three weeks and now that Fiona is healthy > again we are not in the mood to start it again. > > I think that your hubby is right about the guessing game. And I am glad that I > can have an open discussion with our docs about their line of thinking. > > > Bye-bye > Torsten, dad of Fiona 3.5wcf > e-mail: aberdeen95@... > > > *********************** > 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 January 31, 2001 Report Share Posted January 31, 2001 Hi . Im from Australia and I have 2 children, Liam 6 wocf and Eilish 3 wcf. Eilish has always been on Pancrease. She started with 1/2 until 6 months then went to 1. Now she has 2 - 3 depending on the fat content of the food we force down her throat (not a good eater). Thanks > > > > Thanks for the welcome! > > I'm really glad I've found my way here. > > Is there protocal about what we can and cant talk about? > > Can we complain here?? lol > > > > Josh also has asthma and a terrible allergy problem. Are there > > other's with this also? > > They tried him on Flovent inhaler for 2 weeks, but it made no > > difference. > > > > What enzymes are your kids on? Josh takes Creon 5. This is his third > > switch of enzymes. > > > > OK, I wont ask too much at a time. I just have so many questions. > > > > stein > > > > > > > > *********************** > > 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 > > _________________________________________________ > > > > > > > > > > > > > *********************** > 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 January 31, 2001 Report Share Posted January 31, 2001 Josh is on the Creon 5 and takes 3 with 1 jar of baby food and 1 with each side of nursing. (yes I nurse and I fought tooth and nail to keep it this way) I cant believe how many dr's are against Breast feeding. I just thought it was normal that Josh takes so many enzymes. Now to hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me wonder. HMMMM I'm going to speak to the dr about this! Anyone from Boston?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 > Josh is on the Creon 5 and takes 3 with 1 jar of baby food and 1 with > each side of nursing. (yes I nurse and I fought tooth and nail to > keep it this way) I cant believe how many dr's are against Breast > feeding. > > I just thought it was normal that Josh takes so many enzymes. Now to > hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me > wonder. > > HMMMM I'm going to speak to the dr about this! > > Anyone from Boston?? I forgot to mention that with the jar food I add 1/2 tsp of oil and 1/2 tab of salt. stein..(Getting with the program)Mom of 8 1/2 months WCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 , I think the nursing is so wonderful! On this list I don't dare even say how long I nursed but I think it is a big part of the reason why my daughter has been so healthy! Keep it up. Don't forget, Creon 5's are half the dose of Creon 10's so the fact that Mycah takes four ten's means she is really getting a lot more. Lori enzymes > Josh is on the Creon 5 and takes 3 with 1 jar of baby food and 1 with > each side of nursing. (yes I nurse and I fought tooth and nail to > keep it this way) I cant believe how many dr's are against Breast > feeding. > > I just thought it was normal that Josh takes so many enzymes. Now to > hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me > wonder. > > HMMMM I'm going to speak to the dr about this! > > Anyone from Boston?? > > > > *********************** > 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 January 31, 2001 Report Share Posted January 31, 2001 << I just thought it was normal that Josh takes so many enzymes. Now to hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me wonder. HMMMM I'm going to speak to the dr about this! >> Remember, it also depends on the strength of the enzymes...... For example, takes 5 to 6 enzymes with his meals (turned 5 two days ago) but he takes the Creon 10's.....so they are double the strength of the creon 5's. Mallory takes 4 creon 10's (or two creon 20's....) and she is 3....if she were taking the creon 5's, she would have to take eight of them with her meals....does that make sense to you? ph who is 19 months takes either 4 creon 5's (usually this so he can swallow them whole....), or two creon 10's, or one creon 20. I hope this makes sense.... Also, all kids are different. has always seemed to need the higher dose end of the enzymes. My neice, who weighs more than he does, only takes 4 creon 10's, for example, the same as Mallory who is almost 10 lbs lighter than my neice..... Take care, and mine were all breastfed,too, by the way...... Jen Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 << I > have found that she doesn't need enzymes as much > when > nursing. I guess this depends on how much Josh is > nursing. >> This, too, is a terrific point!!!!! ph gained weight really well until we added food, and that was when he fell off the growth charts. When we did add enzymes, the doc said we did not have to give them to him for breastfeeding, just for food, since apparently he did fine without enzymes on breastmilk alone. I realize this may not be true for everyone.... but, he was 12 pounds by a month and 14 by two months (no enzymes, had not tested him yet....) He weighed 5 lbs at birth, so you can see that gaining to 12 pounds by a month is alot!!! Yet, by a year, he was hovering at just under 16 lbs and not even close to being on the growth chart. Four lbs from 2 months to a year is not alot of weight gain. Anyway, we never did give him enzymes with breastmilk, only with food, and he began gaining right away once we added enzymes with his food. ( I can't really comment about this with the other kids, as we did not know they had CF when they were babies and still breastfed....) Take care, Jen Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 i have never heard of creon. brandon has been on Pancrease 10 and then ultrase mt 10, ultramse mt 20(he took these the longests aound 5 yrs until he was taking 11 at each meal ) and now he is on pancrecarb ms 8 ( he takes 8 - 9) he has been on these for 2 years give or take. and i can't even swollow a tiny little pill and he swollows all at once. chris mom of 3 brandon 12 yrs w cf On Wed, 31 Jan 2001 16:55:38 -0500, cfparents wrote: > , I think the nursing is so wonderful! On this list I don't dare even > say how long I nursed but I think it is a big part of the reason why my > daughter has been so healthy! Keep it up. > > Don't forget, Creon 5's are half the dose of Creon 10's so the fact that > Mycah takes four ten's means she is really getting a lot more. > > Lori > enzymes > > > > Josh is on the Creon 5 and takes 3 with 1 jar of baby food and 1 with > > each side of nursing. (yes I nurse and I fought tooth and nail to > > keep it this way) I cant believe how many dr's are against Breast > > feeding. > > > > I just thought it was normal that Josh takes so many enzymes. Now to > > hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me > > wonder. > > > > HMMMM I'm going to speak to the dr about this! > > > > Anyone from Boston?? > > > > > > > > *********************** > > 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 > > _________________________________________________ > > > > > > > > > > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 , Good for you (and for Josh!) for sticking with what you know is best for your child. I think it is criminal that so many docs overlook the importance of good nutrition. The enzymes are so individual, and initially when I put my daughter on them, it " appeared " like she needed more. I have since reduced her to 1/2 an enzyme per 1 jar or equivalent and she is doing much better. I sometimes give her another half if she is taking forever to finish or if I have fortified her food w/oil or another fatty source. I have found that she doesn't need enzymes as much when nursing. I guess this depends on how much Josh is nursing. Anabelle only takes 2-3 ounces at a time. I haven't been impressed that docs can really help w/enzyme dosing. I feel we have to check it out for ourselves. Just my experience so far. Good luck! - - Mom of Lucas (4.5) and Anabelle (20 mo cf) --- wrote: > Josh is on the Creon 5 and takes 3 with 1 jar of > baby food and 1 with > each side of nursing. (yes I nurse and I fought > tooth and nail to > keep it this way) I cant believe how many dr's are > against Breast > feeding. > > I just thought it was normal that Josh takes so many > enzymes. Now to > hear that 2-3 yr olds are taking 3-4 enzymes with > meals, it makes me > wonder. > > HMMMM I'm going to speak to the dr about this! > > Anyone from Boston?? > > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Sorry, I forgot to mention that these are Creon 5 enzymes as well. Also, I am from Concord, MA but live in Chicago. I have yet to formerly introduce myself to the group but will do so soon. - --- courtney poignand wrote: > , Good for you (and for Josh!) for sticking with > what you know is best for your child. I think it is > criminal that so many docs overlook the importance > of > good nutrition. The enzymes are so individual, and > initially when I put my daughter on them, it > " appeared " like she needed more. I have since > reduced > her to 1/2 an enzyme per 1 jar or equivalent and she > is doing much better. I sometimes give her another > half if she is taking forever to finish or if I have > fortified her food w/oil or another fatty source. I > have found that she doesn't need enzymes as much > when > nursing. I guess this depends on how much Josh is > nursing. Anabelle only takes 2-3 ounces at a time. > I > haven't been impressed that docs can really help > w/enzyme dosing. I feel we have to check it out for > ourselves. Just my experience so far. Good luck! > > - - Mom of Lucas (4.5) and Anabelle (20 mo > cf) > --- wrote: > > Josh is on the Creon 5 and takes 3 with 1 jar of > > baby food and 1 with > > each side of nursing. (yes I nurse and I fought > > tooth and nail to > > keep it this way) I cant believe how many dr's are > > against Breast > > feeding. > > > > I just thought it was normal that Josh takes so > many > > enzymes. Now to > > hear that 2-3 yr olds are taking 3-4 enzymes with > > meals, it makes me > > wonder. > > > > HMMMM I'm going to speak to the dr about this! > > > > Anyone from Boston?? > > > > > > > __________________________________________________ > Get personalized email addresses from Yahoo! Mail - > only $35 > a year! http://personal.mail.yahoo.com/ > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 , Keep nursing, I nursed Eilish till she was 18months and then she wasnt gaining so she went onto a bottle, but I really missed it alot. She didnt though never gave her poor mum a thought! Re: enzymes > > > Josh is on the Creon 5 and takes 3 with 1 jar of baby food and 1 > with > > each side of nursing. (yes I nurse and I fought tooth and nail to > > keep it this way) I cant believe how many dr's are against Breast > > feeding. > > > > I just thought it was normal that Josh takes so many enzymes. Now > to > > hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes > me > > wonder. > > > > HMMMM I'm going to speak to the dr about this! > > > > Anyone from Boston?? > > I forgot to mention that with the jar food I add 1/2 tsp of oil and > 1/2 tab of salt. > > stein..(Getting with the program)Mom of 8 1/2 months WCF > > > > *********************** > 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 February 1, 2001 Report Share Posted February 1, 2001 > > In a message dated 2/1/01 1:37:38 PM, poignand@y... writes: > > << I > > have found that she doesn't need enzymes as much > > when > > nursing. I guess this depends on how much Josh is > > nursing. >> > > This, too, is a terrific point!!!!! ph gained weight really well until > we added food, and that was when he fell off the growth charts. When we did > add enzymes, the doc said we did not have to give them to him for > breastfeeding, just for food, since apparently he did fine without enzymes on > breastmilk alone. I realize this may not be true for everyone.... but, he > was 12 pounds by a month and 14 by two months (no enzymes, had not tested him > yet....) He weighed 5 lbs at birth, so you can see that gaining to 12 pounds > by a month is alot!!! Yet, by a year, he was hovering at just under 16 lbs > and not even close to being on the growth chart. Four lbs from 2 months to a > year is not alot of weight gain. Anyway, we never did give him enzymes with > breastmilk, only with food, and he began gaining right away once we added > enzymes with his food. ( I can't really comment about this with the other > kids, as we did not know they had CF when they were babies and still > breastfed....) > Take care, > Jen > > Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, GERD, > OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, > Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon > to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us > also ; also aunt to 3 yo with CF\ Josh eats every 2 hours. He has been taking enzymes since he was 2 weeks old. They said that he needed them and that was that. His last fecal spot check was at a 4+, so he's not absorbing. He also has chronic Rotavirus. Which he's has for 5 months or so.(maybe even longer) THey have sent his poop off to Atlanta to the CDC. Now we have flying $hit among everything else! He is having a really tuff time gaining weight. He's not even on the charts. But i'll tell ya he looks the picture of health with is huge rosey cheeks. He weighs 14 lb. 8 oz as of last week. He's 28 " long. You can see his 6 1/2 mo picture on cystic-l under, Stein....he's a real cuttie! Jen, you must be a power house of a woman. Woman such as yourself give me the motivation to be the best mom I can be. Where are you from? Stein..Mom of CF (8 1/2 mo) & Tori woCF (but has asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 Although the good early weight gain may have been that he more readily absorbed the breast milk, it may also be due to the fact that most babies with cf are born pancreatic sufficient, and that they gradually become pancreatic insufficient as they get older (and the mucus blocks the tubes from the pancreas to the jejunum where they are supposed to naturally go to digest.) There's nothing wrong with breast feeding (in my opinion), but there's nothing wrong with giving enzymes with breast milk, or even switching to a calorie-dense infant formula if the baby isn't thriving on breast milk, either. ~ mommy of 3, 1 wcf <ph gained weight really well >until <we added food, and that was when he fell off the >growth charts. __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2001 Report Share Posted February 3, 2001 hi- Just my two cents worth: I used to spend a great deal of time worrying (obsessing?)about the number of enzymes our was taking, as compared to other kids in our clinic. I realized, after a while, that what I was really worried about was that I thought that if he took more enzymes than other kids it meant his cf was " worse " and he was not going to have a good prognosis. The cf social workera and nutritionist did an inservice with our group that really helped me to see that every person with cf is truly different and that the number of enzymes really does not equal severity of disease. Having said that, it still is not always easy to figure out exactly how many enzymes are the right dose. We go by a couple of things: the number, size and consistency of stool each day, weight maintenance and as good a guess as we can about the food he is about to eat. will be 6 in two weeks and he takes 6 creon 10 with meals and 3 with snacks. He has been at that level for about a year now, if that helps at all. Take care, Debi >From: ron88jen@... >Reply-To: cfparents >To: cfparents >Subject: Re: enzymes >Date: Thu, 1 Feb 2001 00:13:23 EST > > > > ><< I just thought it was normal that Josh takes so many enzymes. Now to >hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me >wonder. > >HMMMM I'm going to speak to the dr about this! > >> > >Remember, it also depends on the strength of the enzymes...... >For example, takes 5 to 6 enzymes with his meals (turned 5 two days >ago) but he takes the Creon 10's.....so they are double the strength of the >creon 5's. Mallory takes 4 creon 10's (or two creon 20's....) and she is >3....if she were taking the creon 5's, she would have to take eight of them >with her meals....does that make sense to you? >ph who is 19 months takes either 4 creon 5's (usually this so he can >swallow them whole....), or two creon 10's, or one creon 20. >I hope this makes sense.... >Also, all kids are different. has always seemed to need the higher >dose end of the enzymes. My neice, who weighs more than he does, only >takes >4 creon 10's, for example, the same as Mallory who is almost 10 lbs lighter >than my neice..... >Take care, and mine were all breastfed,too, by the way...... >Jen > >Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, >GERD, >OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, >Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon >to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us >also ; also aunt to 3 yo with CF _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2001 Report Share Posted February 3, 2001 DEBI, your so right .....On another thing a doc said at an Ed Day (this doc has written a book , many here have read ).Was " IF THE STOOL SINKS, IT is a good sign you have hit the right combination " . Actually --all Cf are different(as you said) , BUT many have allot of similarities. It is a trial & error thing.Gosh...........thats sometimes hard to figure.with our ERIN.It was the stool thing that really regulated hers. Now she adjusts by the foof content.....fats, etc......Bless you LOVE & HUGS, GrandmomBEV Re: enzymes >Date: Thu, 1 Feb 2001 00:13:23 EST > > > > ><< I just thought it was normal that Josh takes so many enzymes. Now to >hear that 2-3 yr olds are taking 3-4 enzymes with meals, it makes me >wonder. > >HMMMM I'm going to speak to the dr about this! > >> > >Remember, it also depends on the strength of the enzymes...... >For example, takes 5 to 6 enzymes with his meals (turned 5 two days >ago) but he takes the Creon 10's.....so they are double the strength of the >creon 5's. Mallory takes 4 creon 10's (or two creon 20's....) and she is >3....if she were taking the creon 5's, she would have to take eight of them >with her meals....does that make sense to you? >ph who is 19 months takes either 4 creon 5's (usually this so he can >swallow them whole....), or two creon 10's, or one creon 20. >I hope this makes sense.... >Also, all kids are different. has always seemed to need the higher >dose end of the enzymes. My neice, who weighs more than he does, only >takes >4 creon 10's, for example, the same as Mallory who is almost 10 lbs lighter >than my neice..... >Take care, and mine were all breastfed,too, by the way...... >Jen > >Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, >GERD, >OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, >Brittany 7 yo foster daughter with Type 1 diabetes (juvenile diabetes) soon >to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us >also ; also aunt to 3 yo with CF _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com *********************** 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 February 8, 2001 Report Share Posted February 8, 2001 , what is you e-mail address I'll give you all the tid- bits I know. Sorry it took me a few days to get back to ya.. Stein Re: enzymes > > >Date: Thu, 1 Feb 2001 00:13:23 EST > > > > > > > > >In a message dated 2/1/01 4:01:44 AM, > cabowabo@m... writes: > > > > > ><< I just thought it was normal that Josh takes > so many enzymes. > Now to > > >hear that 2-3 yr olds are taking 3-4 enzymes with > meals, it makes > me > > >wonder. > > > > > >HMMMM I'm going to speak to the dr about this! > > > >> > > > > > >Remember, it also depends on the strength of the > enzymes...... > > >For example, takes 5 to 6 enzymes with his > meals (turned 5 > two days > > >ago) but he takes the Creon 10's.....so they are > double the > strength of the > > >creon 5's. Mallory takes 4 creon 10's (or two > creon 20's....) and > she is > > >3....if she were taking the creon 5's, she would > have to take > eight of them > > >with her meals....does that make sense to you? > > >ph who is 19 months takes either 4 creon 5's > (usually this so > he can > > >swallow them whole....), or two creon 10's, or > one creon 20. > > >I hope this makes sense.... > > >Also, all kids are different. has always > seemed to need > the higher > > >dose end of the enzymes. My neice, who weighs > more than he does, > only > > >takes > > >4 creon 10's, for example, the same as Mallory > who is almost 10 > lbs lighter > > >than my neice..... > > >Take care, and mine were all breastfed,too, by > the way...... > > >Jen > > > > > >Mommy of 7, including ph 19 months with CF, > Mallory 3 with CF, > RAD, > > >GERD, > > >OSA, port-a-cath; 4 with CF, port-a-cath; > 6, Miranda > 9, > > >Brittany 7 yo foster daughter with Type 1 > diabetes (juvenile > diabetes) soon > > >to be adopted by us; ERica 4 yo foster daughter, > soon to be > adopted by us > > >also ; also aunt to 3 yo with CF > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > http://explorer.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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