Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 In a message dated 1/6/2004 3:11:09 AM Central Standard Time, jennroller@... writes: Jenn mom to Dominick, 21 mos and Kaley, 7 wks Hi Jenn! I am a mom of three daughters 2 of them have CF they are 11 w/cf, Lynzie 9 wo/cf, and Natalynn 6 w/cf. This is a great group and you will love all of the people here!! If you have any questions this is the place to ask! Colorado we love to visit Colorado it is a beautiful state!! We are in Iowa with all of the corn field!!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 WELCOME Dear . We are glad you found us too. It is always great to " speak " with others & hear their done that thing.....Gives a different way of handling a situation --when necessary. It sure does help one not feel so guilty .We know all about genetics & that helps...... You will no doubt hear from many so be prepared:):)hehe Have a great 2004 ahead LOVE & HUGS, GrandmomBEV New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome aboard! The moderators are great; the passengers are informative, ass well as ebtertaining on occasion, and I would describe this list as very active: parents, grandparents, aunts and uncles, patients (adult), spouses, partners and friends. AND, we are definitely pulling for both better treat ment and for a cure. I mean, you get it all on this list! That is because people such as you join us; none of us is happy to hear of a new cf diagnosis, but this is the safest cf space in cyberspace! Dive right in; the water is always fine here; you will be welcomed by us all--get ready! Love to you and to yours, n Rojas, wcf, mom of 3 MATURE adults with children; the youngest adult has cystic fibrosis, too, and is now 38-- New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Don't you just love that typing? n New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 , Welcome to the group. It sounds like Kaley is doing well. It is great that you had such an early diagnosis. That is a real big advantage. Gale Grandma to Abby (2yo wcf) > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi, Jen... How right you are about this group.So many loving, caring, educated, knowledgeable, helpful...lol, do ya get the pic?The people here are great is what i mean! I'm sorry we have another one out there wcf, but your dr is right, there so much out there for cf people now, and luckily caught it early so as to avoid lung damage or malnutrition. My son also had deltaf508, which from what i understand is the most common mutation, where its been my experience we face the lung and gastrointestinal issues.For Tyler(each case is unique), he has had a little trouble with lungs, but only once was it something that antibiotics couldnt take care of.The bigger struggle, with the gi aspect of the disease, has still not been too overwhelming.Mostly frequent, bulky, foul, AND i DO MEAN FOUL:) smelling poops, due to malabsorbtion.He is on ultrase mt20, and were still working to help him in that area:). With cf, some days are just better than others, but at least we have each other for support;the one thing I hate to depend on others for, and the one thing you HAVE to have with this disease.(Thank goodness for this place!!!) Be prepared for the, " he LOOKS healthy " comments, they're sure to come...nothing more aggravating than someone making you feel like your dramatizing your child's health issue,lol. Well, guess I've been rambling, AGAIN, lol. Hope you find all the answers you need within the support of those here. Keep us updated!!! Patty, mom to Tyler,8wcf, Austin almost5 wocf, and my princess, Selena, almost 4 wocf (\0/) :) > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome to the group. My daughter is 5 with CF, diagnosed at 9 months. We are expecting now and will be having the amnio. I am sorry that your daughter has CF but you have found a great place for support. Another good thing about Colorado is that the National Cystic Fibrosis Awareness Committee is based there! www.cfawareness.org everyone here is happy to answer questions about what they have experienced, so fire away! Mom of 5 with CF and one on the way check out our group http://groups.msn.com/TeamJane New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome to the group! We give Zach his ADEK's in his juice. I know Kaley is much too young for juice, but maybe if you put it in her bottle she would take it. If she is exclusively breastfed, then that won't work. To get Zach to take meds he hates, I put lay him on the floor and pull gently on his cheek with my finger (like you hook a fish). Then I can put the syringe closer to the back of his throat. He doesn't have to taste it as much. Worth a try. So glad to hear she is doing well with lungs and weight! Those are two big things in her favor. Sara - mommy of Zach 23 months on Thursday > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome . My daughter (almost 2 wi cf) hated the ADEK's too. We told the doctor and they prescribed the tablet form. She can chew them up now but before we used to crush them with a pill crusher and put them in her applesuase. They taste like vanilla and she likes them. She NEVER would take the ADEK's even if I put it in her milk. She just wouldn't take any of the bottle. I hope this helps. mom of Makenzie 7 w/o cf and Jaelyn 2 on January 12 with cf New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 I haven't heard from any parent that any kid liked the ADEK's. What we did was just squirt them into Soley's mouth like medicine, and got it over with. Now (she's 11 months) we just mix them into her morning cereal, yogurt, applesauce, etc, and she doesn't even notice them. But we never had any problem mixing it with milk either- Soley would still drink the bottle- maybe we were lucky in that regard. Elias New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome Jenn, Dominick and Haley! You are right this is a great place for cf parents. I am sort of an old timer. My daughter wcf is 19, will be 20 Jan 29. I also have a son Nick who is 21 and healthy. My daughter is doing very well at the time. I hope to get to know you all better as we hear more about you. love, M mom of Nick age 21 nocf and age 19 wcf from Placentia Ca (Orange County) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi , Welcome to the group ) I am sorry to hear of Kaley's dx, but I am happy you found our " little " group. This list is full of wonderful, VERY HELPFUL people!! When (my ds, 7 wcf) was little I would put the ADEK's in one of his nighttime bottles, so he would take it while he was sleeping and really wouldn't know he was drinking it. I hope this might work for you too. Deana Mom to 13 no cf, and 7 wcf ----- Original Message ----- > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome to the group. I am sure you will find lote of info and support here. Vondie New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome all; the welcome I sent to only one was meant for all of you-- terrible at names, n Rojas Re: New to the group! Welcome Jenn, Dominick and Haley! You are right this is a great place for cf parents. I am sort of an old timer. My daughter wcf is 19, will be 20 Jan 29. I also have a son Nick who is 21 and healthy. My daughter is doing very well at the time. I hope to get to know you all better as we hear more about you. love, M mom of Nick age 21 nocf and age 19 wcf from Placentia Ca (Orange County) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 I just found out last week that the New Adeks are called ABDEKS--just passing the word--n Rojas Re: New to the group! Welcome to the group! We give Zach his ADEK's in his juice. I know Kaley is much too young for juice, but maybe if you put it in her bottle she would take it. If she is exclusively breastfed, then that won't work. To get Zach to take meds he hates, I put lay him on the floor and pull gently on his cheek with my finger (like you hook a fish). Then I can put the syringe closer to the back of his throat. He doesn't have to taste it as much. Worth a try. So glad to hear she is doing well with lungs and weight! Those are two big things in her favor. Sara - mommy of Zach 23 months on Thursday > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Dear n, That isn't a new ADEK. It is from another company & they have added Vitamin A they are from a company who is a distributor only--- called CFSOURCE they are a capsule & most folks prefer them . They don't taste bad either. They are also cheaper per bottle. For little ones you can just have a pin prick in them & squeezed in the mouth. No need for drops :) really:) Many folks in other countries have been doing that as the drops of ADEk were on backorder so much & the kids didn't like the taste.. Anyway. We have been selling them a couple years now. Of course, we GIVE them free with any enzyme order, except Ultrase , Those folks we put on the Comprehensive Care Program & they get them free that way too Soooooooooooo How was your day - hehehahahehe Take care LOVE & HUGS, BEV...........GRANDMOMBEV Re: Re: New to the group! I just found out last week that the New Adeks are called ABDEKS--just passing the word--n Rojas Re: New to the group! Welcome to the group! We give Zach his ADEK's in his juice. I know Kaley is much too young for juice, but maybe if you put it in her bottle she would take it. If she is exclusively breastfed, then that won't work. To get Zach to take meds he hates, I put lay him on the floor and pull gently on his cheek with my finger (like you hook a fish). Then I can put the syringe closer to the back of his throat. He doesn't have to taste it as much. Worth a try. So glad to hear she is doing well with lungs and weight! Those are two big things in her favor. Sara - mommy of Zach 23 months on Thursday > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Oh! Thank you; I assumed that they had added B; thank you for the information! n Re: New to the group! Welcome to the group! We give Zach his ADEK's in his juice. I know Kaley is much too young for juice, but maybe if you put it in her bottle she would take it. If she is exclusively breastfed, then that won't work. To get Zach to take meds he hates, I put lay him on the floor and pull gently on his cheek with my finger (like you hook a fish). Then I can put the syringe closer to the back of his throat. He doesn't have to taste it as much. Worth a try. So glad to hear she is doing well with lungs and weight! Those are two big things in her favor. Sara - mommy of Zach 23 months on Thursday > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 never really minded the ADEKS much, she still takes them (yes she makes a face about it, but doesn't complain too much). Compared to the taste/texture of cipro and augmentin (she would scream and spit them out), it wasn't so bad.......... New to the group! Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 I have a four month old son and two year old daughter, both with cf. They do not like to take liquid ADEK. It also seemed to cause more reflux for them. My son now takes liquid Vitamax from Cystic Fibrosis Services . He likes the taste and it doesn't stain his clothes. It has the same vitamins and amounts as ADEK. My daughter now takes the ADEK tablet. This is a good website for parents!! Best wishes to your family and congratulations on the new addition. What a blessing! Sharon > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Welcome aboard; dive right in; this is a safe cf space--perhaps the safest in all of cyberspace; the water is always fine--great moderators and friendly passengers on this cruise! Love and Welcome, n Rojas Re: New to the group! I have a four month old son and two year old daughter, both with cf. They do not like to take liquid ADEK. It also seemed to cause more reflux for them. My son now takes liquid Vitamax from Cystic Fibrosis Services . He likes the taste and it doesn't stain his clothes. It has the same vitamins and amounts as ADEK. My daughter now takes the ADEK tablet. This is a good website for parents!! Best wishes to your family and congratulations on the new addition. What a blessing! Sharon > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 WELCOME to a really nice group of folks yes, all try very hard to be helpful & enjoyable. There are always shoulders to lean on as is needed. We all need that once in awhile . Also, some really smart folks too :) I am not including myself there, but many have " been there-done that " education as well. Now that's knowledge, Anyway----- So glad your here. ENJOY LOVE & HUGS, GrandmomBEV Re: New to the group! I have a four month old son and two year old daughter, both with cf. They do not like to take liquid ADEK. It also seemed to cause more reflux for them. My son now takes liquid Vitamax from Cystic Fibrosis Services . He likes the taste and it doesn't stain his clothes. It has the same vitamins and amounts as ADEK. My daughter now takes the ADEK tablet. This is a good website for parents!! Best wishes to your family and congratulations on the new addition. What a blessing! Sharon > Hi everyone. I just found this group, and I'm glad I did. The other > CF board I found was on ivillage parentsplace but it's not very > active. I have a 7 week old daughter who has CF. I also have a 21 > month old son, Dominick, who does not have CF, at least we're pretty > sure he doesn't. Hasn't had a sweat test, but is very healthy and > his newborn screening test did not show he had it. We found out > Kaley has CF through prenatal tests. I was tested just to see if I > was a carrier for CF. My midwife offered it and I said sure, why > not, never even thinking it was a possibilit. When the test showed > I was a carrier, we had my husband tested. We were shocked to find > out he was a carrier also, so we decided to have an amnio. The test > showed she has CF, df508 or something like that (still new to all > the lingo). As hard as it was, I'm glad we found out before she was > born. Gave us some time to get used to it and to do some research. > We live in Colorado so we take her to Children's Hospital, and I've > heard very good things about the clinic there. Our pediatrician > told us if Kaley has to have something, CF was a " good " thing to > have in Colorado because of the doctors at Children's. > > Kaley has been on Ultrase and ADEK's since 1 week of age. She hates > the vitamins, any thoughts on making it easier for her? She was > born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, > and hasn't had any respiratory issues (knock on wood!). That is my > biggest worry since Dominck is in daycare. We go back to the clinic > next week for another check up. > > I'm very glad I found this, even with all the research I've done, > it'll help to be able to ask questions and talk to parents who have > actually been through it. > > Jenn > mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi , First of all congratulaions on the birth of your daughter. My 2 1/2 year old son, hated taking the medication as well and the docs told me to put a tiny amount of honey in his mouth after them to take away the taste (only the amount of the tip of your finger wiped around in her mouth), he learnt by 2 months old that he tasted the yucky and then the sweet stuff and was happy to take it from then on. Hope this works for you and best of luck with her. - mum to 2 1/2 with CF wrote: Hi everyone. I just found this group, and I'm glad I did. The other CF board I found was on ivillage parentsplace but it's not very active. I have a 7 week old daughter who has CF. I also have a 21 month old son, Dominick, who does not have CF, at least we're pretty sure he doesn't. Hasn't had a sweat test, but is very healthy and his newborn screening test did not show he had it. We found out Kaley has CF through prenatal tests. I was tested just to see if I was a carrier for CF. My midwife offered it and I said sure, why not, never even thinking it was a possibilit. When the test showed I was a carrier, we had my husband tested. We were shocked to find out he was a carrier also, so we decided to have an amnio. The test showed she has CF, df508 or something like that (still new to all the lingo). As hard as it was, I'm glad we found out before she was born. Gave us some time to get used to it and to do some research. We live in Colorado so we take her to Children's Hospital, and I've heard very good things about the clinic there. Our pediatrician told us if Kaley has to have something, CF was a " good " thing to have in Colorado because of the doctors at Children's. Kaley has been on Ultrase and ADEK's since 1 week of age. She hates the vitamins, any thoughts on making it easier for her? She was born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well, and hasn't had any respiratory issues (knock on wood!). That is my biggest worry since Dominck is in daycare. We go back to the clinic next week for another check up. I'm very glad I found this, even with all the research I've done, it'll help to be able to ask questions and talk to parents who have actually been through it. Jenn mom to Dominick, 21 mos and Kaley, 7 wks ------------------------------------------- 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. ------------------------------------ --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Has anyone tried putting liquid vitamins in pediasure if they are old enough and drinking that instead of formula? We do and our daughter takes it very well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 That's funny. Abby will take ADEK without fussing, but won't touch Pediasure. :>) Gale > Has anyone tried putting liquid vitamins in pediasure if they are old enough and drinking that instead of formula? We do and our daughter takes it very well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Welcome Cortney, This is a great group of people with lots of information to share. I haven't had my surgery yet (9/7) and have learned so much which I know will enable me to succeed post op. And yes this is a busy group at time's with interesting topics. Take care, in AL. Quote Link to comment Share on other sites More sharing options...
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