Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 -Hi , First i want to say how sorry I am for your loss. I am glad to see though that you are researching CF so you can be well informed. As to the questions you posed. First CFr's have trouble also with A D E and K vitamins-My little one takes ADEK a vitamin supplement. I don't know about taking extra of certain vitamins if you are carrying a CF baby-i did not know mine was CF until after she was born-I'm sure there will be others on the post with more experience in that area. Second I did have alot of extra water retention and lots of extra amniotic fluid which mademe look much more pregnant than I was but the water retension wasn't as severe as yours sounded. Third my little girl was born like yours with a meconium illius that had already perforated her bowel-she has surgery before she was twenty -four hours old-. She is a double delta F508-my husband and each passed her the same gene. Other than aspirated pneumonia she got from severe reflux-she has not had any lung issues until this year when she had a little stuff in her lungs and was in the hospital 10 days on antbiotics. She is pancreatic insufficinet-she takes enzymes with her food so she digests better and takes in more calories. This is just my little one-as you have probably already figured out even with two Cf children having the same mutations-it does not mean that will experience the same symptoms at the same time in their lives. Each of us has a unique story with shared and different outcomes and experiences and we all learn from each other here on this post. I hope I have helped answer some of your questions just a little. My best to you and your husband. Sincerely, Deborah-mother to three Abigail-9 ncf, -soon to be 6-ncf and beth our little CFr- 2 1/2 My email address is tdm8490@... -- In cfparents@y..., " smoneill " <smoneill@x> wrote: > Hi all > Just a question to mothers with CF children, when I was pregnant with Lily(wcf) who has since died, I experienced sore burning feet from the beginning of my pregnancy, also all over water retention and sore backs of my legs. My feet would be so sore that I would want to crawl around on my hands and knees. Has anyone else experienced strange going ons with CF babies? I have since found out that CF children are very short on vitamin B6 , B5 , Magnesium and Vitamin E. Has anyone known this and taken mega doses of these vitamins during pregnancy or given them to their children after a diagnosis? Just curious and trying to piece figure some things out. > > My next question is Lily had the CF with 508, not quite sure how it is written. What are peoples experiences with this type of chromosome problem, I want to know how varied it is. Lily had blocked bowel and needed 2 operations, this was still not very successful, she also started having lung problems and they could not aspirate the mucus out, I dont know what other problems she would have been faced with because she died at 8 days old. Can people please tell me of their experience if they have this 508 gene. I want to find out the varying degrees if there are any. Thank you. > and carriers of CF > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 I am so very sorry to hear of your little girl's passing. My daughter too has Delta F508 (2 copies). She is now nearly five. was born with meconium ileus and needed the two ops as did Lily however she did not experience any real lung involvement until about twelve months ago. She is also pancreatic insufficient. I believe regardless of the genotype it is very difficult to determine a child's outcome even if you do have another as as mentioned on this list, other genes do come into play. I have a friend with two children with cf with Delta 508 and they vary tremendously. Once had meconium ileus, the other didn't. One needs to be tube fed, the other doesn't. One requires more salt replacement therapy than the other etc. all I can say is that as you know this is indeed a dreadful disease there is no denying this but unfortunatley one could never predict what outcome Lily may have had as so very much relies on this. (Eg: maintenance, environment, geneotype plus other genes) I probably haven't been too much help but I can say I love our little girl more than life itself, but if I had known she had cf prior to conception, well who knows, that is really up to the couple involved I guess. Take care and hope to keep hearing from you (Mum of wcf from Oz) CFvitamins and 508 > Hi all > Just a question to mothers with CF children, when I was pregnant with Lily(wcf) who has since died, I experienced sore burning feet from the beginning of my pregnancy, also all over water retention and sore backs of my legs. My feet would be so sore that I would want to crawl around on my hands and knees. Has anyone else experienced strange going ons with CF babies? I have since found out that CF children are very short on vitamin B6 , B5 , Magnesium and Vitamin E. Has anyone known this and taken mega doses of these vitamins during pregnancy or given them to their children after a diagnosis? Just curious and trying to piece figure some things out. > > My next question is Lily had the CF with 508, not quite sure how it is written. What are peoples experiences with this type of chromosome problem, I want to know how varied it is. Lily had blocked bowel and needed 2 operations, this was still not very successful, she also started having lung problems and they could not aspirate the mucus out, I dont know what other problems she would have been faced with because she died at 8 days old. Can people please tell me of their experience if they have this 508 gene. I want to find out the varying degrees if there are any. Thank you. > and carriers of CF > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 , So sorry to hear about your little one. All cf children suffer vitamin deficiencies. Eilish (3 1/2) takes vitamin a,d,e and k. My pregnancy was a breeze with both my kids. I did feel tired though as Im anaemic and pregnancy makes it worse. My cfers birth was a breeze (as far a births go). My first child, non cfer, was 36hrs and Eilish was 3 hrs and wonderful. Thinking back it did take her 3-4 days to pass the black poo, where as my first child did it within the first 24hrs. She also had watery poo, but having never heard of cf, we just thought it was a new born's system cleaning out. Take Care of Yourself. (mummy to Liam 6 wocf & Eilish 3 wcf) E.MAIL:ie@... CFvitamins and 508 > Hi all > Just a question to mothers with CF children, when I was pregnant with Lily(wcf) who has since died, I experienced sore burning feet from the beginning of my pregnancy, also all over water retention and sore backs of my legs. My feet would be so sore that I would want to crawl around on my hands and knees. Has anyone else experienced strange going ons with CF babies? I have since found out that CF children are very short on vitamin B6 , B5 , Magnesium and Vitamin E. Has anyone known this and taken mega doses of these vitamins during pregnancy or given them to their children after a diagnosis? Just curious and trying to piece figure some things out. > > My next question is Lily had the CF with 508, not quite sure how it is written. What are peoples experiences with this type of chromosome problem, I want to know how varied it is. Lily had blocked bowel and needed 2 operations, this was still not very successful, she also started having lung problems and they could not aspirate the mucus out, I dont know what other problems she would have been faced with because she died at 8 days old. Can people please tell me of their experience if they have this 508 gene. I want to find out the varying degrees if there are any. Thank you. > and carriers of CF > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 : I am responding to your questions about non typical things happening during pregnancy with a CF child. I have had two children. My first without CF and my second with. From very early, I seemed to have every problem in the books with my second (but fortunately nothing extremely serious). I had early spotting, low lying placenta, high blood pressure. During labor the nurse thought the baby had turned breech, which the dr said was nearly impossible since she had a scalp monitor on, she had only moved high into my abdomen. Maegan's heart rate dropped considerable for about four minutes and they were about to do an emergency c-section but then it returned to normal. The delivery was quick and easy, Maegan was 2 pounds smaller than my first. All of these things I believe could have happened whether she had CF or not. The only thing that I think might be CF related was after delivery only half of my placenta separated. The Dr described the remaining part as being very sticky. She basically had to go in and scrape it off. My question is whether the placenta takes after the baby's genes or the mom's? I would be interested in knowing if any other women have had this same situation happen. Amy Jo - Mom to Maegan 7m wcf and Tierney 2.5 y wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 , Seth(2.5) has both mutation that are F508. Seth has been very healthy and so I think it really depends on each individual persons body. I also didn't notice anything abnormal about the pregnancy. I too was completly swollen throughout, but never gave it a second thought. Sorry I'm not full of more information. Mandy mom of Seth w/ CF Terr no CF, and Madison 1.5 weeks left to go! > >Reply-To: cfparents >To: , <cfparents > >Subject: CFvitamins and 508 >Date: Sun, 18 Mar 2001 16:43:14 +1200 > >Hi all >Just a question to mothers with CF children, when I was pregnant with >Lily(wcf) who has since died, I experienced sore burning feet from the >beginning of my pregnancy, also all over water retention and sore backs of >my legs. My feet would be so sore that I would want to crawl around on my >hands and knees. Has anyone else experienced strange going ons with CF >babies? I have since found out that CF children are very short on vitamin >B6 , B5 , Magnesium and Vitamin E. Has anyone known this and taken mega >doses of these vitamins during pregnancy or given them to their children >after a diagnosis? Just curious and trying to piece figure some things out. > >My next question is Lily had the CF with 508, not quite sure how it is >written. What are peoples experiences with this type of chromosome >problem, I want to know how varied it is. Lily had blocked bowel and >needed 2 operations, this was still not very successful, she also started >having lung problems and they could not aspirate the mucus out, I dont know >what other problems she would have been faced with because she died at 8 >days old. Can people please tell me of their experience if they have this >508 gene. I want to find out the varying degrees if there are any. Thank >you. > and carriers of CF >----------------------------------------------------- >Click here for Free Video!! >http://www.gohip.com/freevideo/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In response to the DF508 question, my son is a double DF508. When my water broke two weeks early I had heavy merconium in the water. It was a difficult delivery (forceps) and he came out in shock with an Apgar of 4. But my two pregnancies (my daughter does not have CF) were nearly identical (gestational diabetes, tremendous weight gain, and both kids were two weeks early to the day) but my daughter had no merconium in the water and was a very easy delivery. Santosh is 3 1/2 now and he is pancreatic insufficient but otherwise doing well. He takes only Pancrecarb 8 with meals and ADEKs. We are waiting for him to be big enough to get a vest - his chest is still too small. Although he has had his share of fevers/colds/ and even roseola, he has been on antibiotics only three times after diagnosis, (@ 9 months old) for his two ear infections and for a bad case of bronchitis. Keep in mind, , this is less than most " normal " kids! His doctors work with me to avoid antibiotics at all costs if the lungs are not involved, because it just destroys his stool and he loses tremendous amounts of weight (up to 5lbs!) that is very hard to gain back since he is allergic to milk protein. As an aside - my daughter is 18months old and has yet to be on antibiotics for anything, (despite colds, fevers, etc) so maybe they have similar immune system genes. I hope this helps - Santosh is very energetic and we're so blessed to have him! I think the other genes a child inherits vary wildly and therefore make CF presentations unique. Krishnan mother of Santosh, 3 1/2 wcf, and Leela 18mowocf CFvitamins and 508 Hi all Just a question to mothers with CF children, when I was pregnant with Lily(wcf) who has since died, I experienced sore burning feet from the beginning of my pregnancy, also all over water retention and sore backs of my legs. My feet would be so sore that I would want to crawl around on my hands and knees. Has anyone else experienced strange going ons with CF babies? I have since found out that CF children are very short on vitamin B6 , B5 , Magnesium and Vitamin E. Has anyone known this and taken mega doses of these vitamins during pregnancy or given them to their children after a diagnosis? Just curious and trying to piece figure some things out. My next question is Lily had the CF with 508, not quite sure how it is written. What are peoples experiences with this type of chromosome problem, I want to know how varied it is. Lily had blocked bowel and needed 2 operations, this was still not very successful, she also started having lung problems and they could not aspirate the mucus out, I dont know what other problems she would have been faced with because she died at 8 days old. Can people please tell me of their experience if they have this 508 gene. I want to find out the varying degrees if there are any. Thank you. and carriers of CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Dear , I have a baby boy who is 9 mo now and was diagnosed soon after birth through a neonatal screening, which is mandatory in Argentina. He's my only child, and he's a Double Delta F508 as well. My pregnancy was absolutely normal. The baby was born on week 38 1/2. The only problem was an emergency c-section, because his heartbits got too slow. He had an Apgar score of 7, 9. He was born with 3.070 kg ( around 6 3/4 lb). Everything seemed OK while we stayed in Hospital. I don't know why, but I asked my ObGyn and the Paed if Agustin was doing fine *lots* of times... Probably because I expected a bigger baby ... I somehow guessed that there was something going on ... I just couldn't figure out exactly what. The ObGyn told me, " Come on, , everything's perfect. The baby had an Apgar of 7 - 9. He's doing great. What else can you expect? " , as if I was bothering him with my questions... The baby only had jaundice, which is nothing to get too worried about ... As you may see, there are no *rules* on this disease ... Please receive all my love. Take much care, Mom of Agustin, 9 mo wcf trish@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Hi Amy Jo, I had the same thing happen during the birth of my third child (boy with no CF). My placenta didn't come out, they had to go in and scrap it out. Very painful! Worse than the actual birth I believe. I don't think it is related to CF, although he is a carrier. I had no problems like that with my CF daughter born one and a half years before my son. I had a normal birth 3 years later without any problems (another boy, no CF). , mom of Shantell 19yr wcf, 22 ncf, Robby 18 ncf, Tony 14 ncf Re: CFvitamins and 508 : I am responding to your questions about non typical things happening during pregnancy with a CF child. I have had two children. My first without CF and my second with. From very early, I seemed to have every problem in the books with my second (but fortunately nothing extremely serious). I had early spotting, low lying placenta, high blood pressure. During labor the nurse thought the baby had turned breech, which the dr said was nearly impossible since she had a scalp monitor on, she had only moved high into my abdomen. Maegan's heart rate dropped considerable for about four minutes and they were about to do an emergency c-section but then it returned to normal. The delivery was quick and easy, Maegan was 2 pounds smaller than my first. All of these things I believe could have happened whether she had CF or not. The only thing that I think might be CF related was after delivery only half of my placenta separated. The Dr described the remaining part as being very sticky. She basically had to go in and scrape it off. My question is whether the placenta takes after the baby's genes or the mom's? I would be interested in knowing if any other women have had this same situation happen. Amy Jo - Mom to Maegan 7m wcf and Tierney 2.5 y wocf *********************** 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...
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