Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 You didn't leave your name so I'm not sure who I'm talking to. I received the cook-book....Cooking Up Calories. It costs around 10.00 dollars and I think I got it from the Pittsburgh Cystic Fibrosis Center. If anyone happens to know this phone # would you please print it for this lady? from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Welcome to this group. I have a booklet with recipes etc. from babies to preschoolers and older that was given to me from the hsp. when my daughter was dx at 3 weeks of age. I could e-mail these if you would like. Just let me know. Mummy to Liam 7 wocf and Eilish 4 wcf Introduction > I am a foster mother to a 10 month old boy with cf who my husband and > I are hoping to adopt. He is doing well overall but has had > pneumonia x3 since birth and is currently on Tobi and Augmentin in > addition to his regular nembulizer treatments of Pulmicort with > Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has > still had problems with wgt gain. Does anyone have suggestions for > recipe books for high protein/fat recipies for this age group and/or > suggestions for how to entertain a 10 month old for 2 nembulizer > treatments twice daily? We have been fairly successful with Baby > Einstein videos but he still gets bored. He is also fighting his CPT > more and more as he gets older but so far we have still been managing > to get it done. I am glad this group is available and look forward to > networking with you. > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 The CF Centers are the only ones that have them.It is aDCI sponsored cookbook by Gail farmer. (she is with Kaiser Peremente clinics in CA. (5). She has written several .I have one from 1986. " Fat & Loving it " It is excellent book. right now she is doing one with Sanford that should be out soon. The one you have can be gotten from CF Centers only , as I understand it. I had a form several issues back in my newsletter telling folks to go to their centers Coor.'s or Dietians and ask them for it . At that time it wasn't an item for sale.....Only so many were printed for giveaways compliments of PANCRECARB(DCI)............. LOVE & HUGS, GRANDMOMBEV Re: Introduction You didn't leave your name so I'm not sure who I'm talking to. I received the cook-book....Cooking Up Calories. It costs around 10.00 dollars and I think I got it from the Pittsburgh Cystic Fibrosis Center. If anyone happens to know this phone # would you please print it for this lady? from PA 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Hello. What is your name? My name is Dawn and my husband and I have adopted a sibling group of three from foster care, none with cf, and later had another daughter with cf. I have a bunch of questins to ask before I give advice...... What type of formula is he on? Are you mixing the formula at higher concentrations to give extra calories? If so, is he getting 24 calories per ounce or 27 calories per ounce? If he is getting the 27 and is stil not gaining weight I have a smootie formula that I came up with when Patti was around 9 months old and teething and wouldn't take a bottle. It is 1/2 cup vanilla hagendaz (270 cal) 1/4 cup formulamixed to 27 cal/oz. (54 cal.) 1/4 cup yoplait custard style yogurt, any flavor, (75-90 cal). Mix it all up in the blender. the recipe makes a total of 8 oz. and it has aproximately 51 cal/oz. Patti loved them and would drink them out of a cup with a straw. If you need information on how to increse the formula calories I will be happy to tell you how to do that as well. Dawn mom of 4, 6 and under, the youngest wcf Introduction > I am a foster mother to a 10 month old boy with cf who my husband and > I are hoping to adopt. He is doing well overall but has had > pneumonia x3 since birth and is currently on Tobi and Augmentin in > addition to his regular nembulizer treatments of Pulmicort with > Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has > still had problems with wgt gain. Does anyone have suggestions for > recipe books for high protein/fat recipies for this age group and/or > suggestions for how to entertain a 10 month old for 2 nembulizer > treatments twice daily? We have been fairly successful with Baby > Einstein videos but he still gets bored. He is also fighting his CPT > more and more as he gets older but so far we have still been managing > to get it done. I am glad this group is available and look forward to > networking with you. > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Hi, . It seems like you have already gotten some good responses, but I thought I would add my two cents. I was surprised to read that you do not have a doctor's appointment for three weeks. Is it a CF center? If not, I would find one quick. My daughter had a positive sweat test on a Thursday, saw her new CF doctor on Sunday and was in clinic starting treatment on Tuesday. Three weeks seems excessive, especially for a new case. The sweat test is the " gold standard " in CF testing. Once the test is positive, it will always be positive. Was the test done at an experience lab? Again, if not, find your local CF center and get the test done there. If however, it was a Cf center, you can trust the results. The most important thing is to get the correct diagnosis and treatment. I know that the test results were shocking. I think many people on the list have felt the same way, I know I did. Keep in touch and let us know what happens. Stay strong, Colleen Mom to Elyse, 1 year w/ cf ps. If you need to, go to www.cff.org for a list of centers. Good luck. Introduction I am in need of a lot of information. This is all very new to me and I am not even sure that I agree with the diagnosis. My son is 2.5 and although I now understand that children and even some adults can be diagnosed after infancy - I guess I just don't understand why or how. Again - I am relaly looking for info - there is so little out there and to be honest I am looking for something to tell me they are wrong. As I have said my son is 2.5 and up until now had been diagnosed and been treated for growth hormone dificency and reactive airway disease. I don't think I can handle anything more right now. It took me 9 months to get the courage to agree to treatment for the GHD and to give the injections and we are doing it and he is growing and it has gotten easier but ....... sorry I am rambling but I haven't told anyone about this yet because I still don't feel like it is official. We have only had one sweat test and it just doesn't seam like that one test should be able to diagnose an illness like this. So they have agreed to test again but not until Feb 7!!! I swear they are trying to make me go crazy. Ok deep breath ... I just read through a lot of the archives and maybe he has a mild case if anything - he is on albuterol and pulmicort inhalers and nebulizer treatments - has been since he was 9 months old - for RAD. He has recently been placed on agumentum and will be for another 3 weeks for a bad sinus infection. he has never had any digestive issues. his bm are fine. we have no family history of this. he was tested at 12 months for GHD because he had failed to grow - he has always been 100% propotionate just extreamly short - fell off all charts at 6 months. The GHT has helped a lot but we didn't start until he was 18 months so he still has a lot of catch up ( not on the charts yet). he is not a perfectly healthy child but I would not concider him ill or what I would think of a child would CF looks like. He is not thin - does not taste like salt ( I don't know if that really works or not), etc. I am sure some of you have gone through what we are going through now. I don't even know for sure if my DH and I are both carriers. I guess I would think they would check that - right? We don't even go for another doc appointment for 3 weeks - I just don't understand all of this - are there any other parents that had children diagnosed over the age of 2 years? If so what tests did your child go through. No one has even told me what the next step is - although I think I stopped listening at " it came back possitive. " Any help is appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 Hi there! Welcome to our group. I'm sure you will find it a great place for support, information, and friendship. I am a foster mom as well, not had any children with cf, but currently have a 15year old girl. Have you been a foster parent for a long time or is this your first? Again, glad to have you join! Amy (mom to Skyler 4yr w/ocf, Tristan 20months w/cf, Cary 15yr w/ocf) Introduction I am a foster mother to a 10 month old boy with cf who my husband and I are hoping to adopt. He is doing well overall but has had pneumonia x3 since birth and is currently on Tobi and Augmentin in addition to his regular nembulizer treatments of Pulmicort with Albuterol BID. He is also on Pancrecarb MS-4 for his enzymes but has still had problems with wgt gain. Does anyone have suggestions for recipe books for high protein/fat recipies for this age group and/or suggestions for how to entertain a 10 month old for 2 nembulizer treatments twice daily? We have been fairly successful with Baby Einstein videos but he still gets bored. He is also fighting his CPT more and more as he gets older but so far we have still been managing to get it done. I am glad this group is available and look forward to networking with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2002 Report Share Posted January 13, 2002 I would love to see the recipes. Thanks for offering. Emma is not on solid foods yet but I will file the recipes away Jen, daughter Emma, 3 mos w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 > I am sorry for your diagnosis and denial is normal feeling. We have two children with CF our 5 mth old was diagnosed through amniotsis we did not have a clue that she would have anything wrong with her. She has been in the hospitol three times since she was born and is taking a lot of medication and breathing treatments. She looks the picture of health and is cute as a button. The doctors said we might want to test her older sisiter who is 2 yrs old. We did and her test came back positive we had the blood test done on her. She has shown no signs or symptoms except her stools were many and loose very rarely did she have hard stools but we did no that was a symptom. She is a very healthy and thick girl who doesnt lok like she missed a meal. She has never been in the hospitol and she only had a few ear infections. So when her test came back positive it was a shock to us. There must be several differnt levels of the disease and degrees of what it affects. She is not salty tasting either. her sister is really salty tasting. There has been no children with cf on either side of our families until now. Hope this helps you so bottom line is only the test can tell for sure. and nna jade5mths and chyann 2yrold wcf Introduction > I am in need of a lot of information. > > This is all very new to me and I am not even sure that I agree with > the diagnosis. > > My son is 2.5 and although I now understand that children and even > some adults can be diagnosed after infancy - I guess I just don't > understand why or how. > > Again - I am relaly looking for info - there is so little out there > and to be honest I am looking for something to tell me they are wrong. > > As I have said my son is 2.5 and up until now had been diagnosed and > been treated for growth hormone dificency and reactive airway > disease. > > I don't think I can handle anything more right now. It took me 9 > months to get the courage to agree to treatment for the GHD and to > give the injections and we are doing it and he is growing and it has > gotten easier but ....... > > sorry I am rambling but I haven't told anyone about this yet because > I still don't feel like it is official. We have only had one sweat > test and it just doesn't seam like that one test should be able to > diagnose an illness like this. So they have agreed to test again but > not until Feb 7!!! I swear they are trying to make me go crazy. > > Ok deep breath ... I just read through a lot of the archives and > maybe he has a mild case if anything - he is on albuterol and > pulmicort inhalers and nebulizer treatments - has been since he was 9 > months old - for RAD. He has recently been placed on agumentum and > will be for another 3 weeks for a bad sinus infection. > > he has never had any digestive issues. his bm are fine. we have no > family history of this. > > he was tested at 12 months for GHD because he had failed to grow - he > has always been 100% propotionate just extreamly short - fell off all > charts at 6 months. The GHT has helped a lot but we didn't start > until he was 18 months so he still has a lot of catch up ( not on the > charts yet). > > he is not a perfectly healthy child but I would not concider him ill > or what I would think of a child would CF looks like. He is not thin - > does not taste like salt ( I don't know if that really works or > not), etc. > > I am sure some of you have gone through what we are going through > now. I don't even know for sure if my DH and I are both carriers. I > guess I would think they would check that - right? > > We don't even go for another doc appointment for 3 weeks - > > I just don't understand all of this - are there any other parents > that had children diagnosed over the age of 2 years? If so what tests > did your child go through. No one has even told me what the next step > is - although I think I stopped listening at " it came back possitive. " > > Any help is appreciated. > > > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Yes, I will take you off of my address book. I'm new to this computer thing and I didn't know a virus went out to address book. Earlier I had asked the group if anyone minded me adding their name to my add. book and I think only one responded. I'm sorry. This message is for sueandjacques from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 , I am new to this also and it probably was me that responded to you and said that I didn;t mind but since then have learned that viruses can be spread that way. I am probably over reacting....nothing new there. Thanks Mom to Elliot 11mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 hi , sorry to hear of your diagnosis, it always starts with the dreaded sweat test, and they may perform this several more times, many of us probably denied this as proof of CF, in the beginning, i know i did!!! Especially when your child is not really unhealthy to look at. i have been through the same with my twins and they are still doing tests since April last Year,when they were 7, you get used to it -really!! This list will help you come to terms with the diagnosis and provides a lot of support. Talk more soon, Love Nat, mum to Marc 10wo/cf, Jake & Jordan 8 w/cf and Dee-anna 5 wo/cf --- lrojasmsi lrojascms@...> wrote: > I am in need of a lot of information. > > This is all very new to me and I am not even sure > that I agree with > the diagnosis. > > My son is 2.5 and although I now understand that > children and even > some adults can be diagnosed after infancy - I > guess I just don't > understand why or how. > > Again - I am relaly looking for info - there is so > little out there > and to be honest I am looking for something to tell > me they are wrong. > > As I have said my son is 2.5 and up until now had > been diagnosed and > been treated for growth hormone dificency and > reactive airway > disease. > > I don't think I can handle anything more right now. > It took me 9 > months to get the courage to agree to treatment for > the GHD and to > give the injections and we are doing it and he is > growing and it has > gotten easier but ....... > > sorry I am rambling but I haven't told anyone about > this yet because > I still don't feel like it is official. We have only > had one sweat > test and it just doesn't seam like that one test > should be able to > diagnose an illness like this. So they have agreed > to test again but > not until Feb 7!!! I swear they are trying to make > me go crazy. > > Ok deep breath ... I just read through a lot of the > archives and > maybe he has a mild case if anything - he is on > albuterol and > pulmicort inhalers and nebulizer treatments - has > been since he was 9 > months old - for RAD. He has recently been placed on > agumentum and > will be for another 3 weeks for a bad sinus > infection. > > he has never had any digestive issues. his bm are > fine. we have no > family history of this. > > he was tested at 12 months for GHD because he had > failed to grow - he > has always been 100% propotionate just extreamly > short - fell off all > charts at 6 months. The GHT has helped a lot but we > didn't start > until he was 18 months so he still has a lot of > catch up ( not on the > charts yet). > > he is not a perfectly healthy child but I would not > concider him ill > or what I would think of a child would CF looks > like. He is not thin - > does not taste like salt ( I don't know if that > really works or > not), etc. > > I am sure some of you have gone through what we are > going through > now. I don't even know for sure if my DH and I are > both carriers. I > guess I would think they would check that - right? > > We don't even go for another doc appointment for 3 > weeks - > > I just don't understand all of this - are there any > other parents > that had children diagnosed over the age of 2 years? > If so what tests > did your child go through. No one has even told me > what the next step > is - although I think I stopped listening at " it > came back possitive. " > > Any help is appreciated. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Where are you? It really does not seem right that they make you wait so long. do they realize how stressed that you are? perhaps you should call your pediatrician and let him know how stressed you are and ask him to step in. What about considering this? for example, had his first sweat test on Dec 17 and the lab set the next one u p for the next day, and the lab tech told us they always work in positives because of the stress for the families. (because we knew already they were booked up for over a mo n th for sweat tests). Also, when our pediatrician tried to get us in for a first appt with the cf doc, apparently they were really booked b/c of the holidays and they saw us on christmas Eve, to this day I still believe that we were dealing with a bunch of people who didn't want to leave us stressed over the holidays, and I will always be grateful. cf docs are some of the kindest docs around, and they certainly care about their kids. (of course, there are bad ones out there too, that is why I asked where you are. like anything,t here are cocky ones or ones who are more into their own accomplishments than their patients health, but our experiences have all been positive. good luck Jen, mommy of 7, 3 with CF > I am in > need of a lot of information. > > > > This is all very new to me and I am not even sure > > that I agree with > > the diagnosis. > > > > My son is 2.5 and although I now understand that > > children and even > > some adults can be diagnosed after infancy - I > > guess I just don't > > understand why or how. > > > > Again - I am relaly looking for info - there is so > > little out there > > and to be honest I am looking for something to tell > > me they are wrong. > > > > As I have said my son is 2.5 and up until now had > > been diagnosed and > > been treated for growth hormone dificency and > > reactive airway > > disease. > > > > I don't think I can handle anything more right now. > > It took me 9 > > months to get the courage to agree to treatment for > > the GHD and to > > give the injections and we are doing it and he is > > growing and it has > > gotten easier but ....... > > > > sorry I am rambling but I haven't told anyone about > > this yet because > > I still don't feel like it is official. We have only > > had one sweat > > test and it just doesn't seam like that one test > > should be able to > > diagnose an illness like this. So they have agreed > > to test again but > > not until Feb 7!!! I swear they are trying to make > > me go crazy. > > > > Ok deep breath ... I just read through a lot of the > > archives and > > maybe he has a mild case if anything - he is on > > albuterol and > > pulmicort inhalers and nebulizer treatments - has > > been since he was 9 > > months old - for RAD. He has recently been placed on > > agumentum and > > will be for another 3 weeks for a bad sinus > > infection. > > > > he has never had any digestive issues. his bm are > > fine. we have no > > family history of this. > > > > he was tested at 12 months for GHD because he had > > failed to grow - he > > has always been 100% propotionate just extreamly > > short - fell off all > > charts at 6 months. The GHT has helped a lot but we > > didn't start > > until he was 18 months so he still has a lot of > > catch up ( not on the > > charts yet). > > > > he is not a perfectly healthy child but I would not > > concider him ill > > or what I would think of a child would CF looks > > like. He is not thin - > > does not taste like salt ( I don't know if that > > really works or > > not), etc. > > > > I am sure some of you have gone through what we are > > going through > > now. I don't even know for sure if my DH and I are > > both carriers. I > > guess I would think they would check that - right? > > > > We don't even go for another doc appointment for 3 > > weeks - > > > > I just don't understand all of this - are there any > > other parents > > that had children diagnosed over the age of 2 years? > > If so what tests > > did your child go through. No one has even told me > > what the next step > > is - although I think I stopped listening at " it > > came back possitive. " > > > > Any help is appreciated. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2002 Report Share Posted January 20, 2002 ..it's quite overwhelming ..there are as you have already found out many children that have been diagnosed later in life. I hope you find the support you need here during this trying time.. Stein..mom to CF (20 mo) & Tori wo/CF in Mass Introduction I am in need of a lot of information. This is all very new to me and I am not even sure that I agree with the diagnosis. My son is 2.5 and although I now understand that children and even some adults can be diagnosed after infancy - I guess I just don't understand why or how. Again - I am relaly looking for info - there is so little out there and to be honest I am looking for something to tell me they are wrong. As I have said my son is 2.5 and up until now had been diagnosed and been treated for growth hormone dificency and reactive airway disease. I don't think I can handle anything more right now. It took me 9 months to get the courage to agree to treatment for the GHD and to give the injections and we are doing it and he is growing and it has gotten easier but ....... sorry I am rambling but I haven't told anyone about this yet because I still don't feel like it is official. We have only had one sweat test and it just doesn't seam like that one test should be able to diagnose an illness like this. So they have agreed to test again but not until Feb 7!!! I swear they are trying to make me go crazy. Ok deep breath ... I just read through a lot of the archives and maybe he has a mild case if anything - he is on albuterol and pulmicort inhalers and nebulizer treatments - has been since he was 9 months old - for RAD. He has recently been placed on agumentum and will be for another 3 weeks for a bad sinus infection. he has never had any digestive issues. his bm are fine. we have no family history of this. he was tested at 12 months for GHD because he had failed to grow - he has always been 100% propotionate just extreamly short - fell off all charts at 6 months. The GHT has helped a lot but we didn't start until he was 18 months so he still has a lot of catch up ( not on the charts yet). he is not a perfectly healthy child but I would not concider him ill or what I would think of a child would CF looks like. He is not thin - does not taste like salt ( I don't know if that really works or not), etc. I am sure some of you have gone through what we are going through now. I don't even know for sure if my DH and I are both carriers. I guess I would think they would check that - right? We don't even go for another doc appointment for 3 weeks - I just don't understand all of this - are there any other parents that had children diagnosed over the age of 2 years? If so what tests did your child go through. No one has even told me what the next step is - although I think I stopped listening at " it came back possitive. " Any help is appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Name:Annette Age: 37 What year was your tubal ligation? 1993, I had the tubal because it was the " socially conscious " thing to do. I didn't want to " overpopulate " the world, or at least that's what everyone told me I should do. I was weak back then, I listened and didn't make the choice on my own. What state do you live in? Connecticut Where are you in the reversal process? I have had a histogram(?) performed and received my medical records from the tl. I have been looking for information to see if it is possible to have the procedure done, finding the right doctor and worried about taking the leap, sending the info and having a doctor tell me that it can't be reversed. If you have had your reversal, which doctor did your surgery? If you have not, which doctor do you plan to use? I am still nervous about choosing and also about cost. It is a great deal of money to spend for only the " possibility " of another child. I want to be sure that I choose a doctor that has a lot of experience and a high success rate. But I have wanted another child, or several, so much, and for so long. Tell us a little about yourself, such as your interests and/or hobbies: I am a soap/toiletries maker who has a wonderful husband, two beautiful teenagers and three cats that have seen fit to adopt us as their own, lol. I knit, crochet, read, sew, garden and bake for fun. We plan on moving to a bigger piece of land if all goes well, so that we can continue to grow an organic garden and maybe get a few more animals. Hope this isn't too much information. Annette Quote Link to comment Share on other sites More sharing options...
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