Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 Thanks for the welcome and asking about my son. He is doing quite well. I believe all the exercise he takes in has made a big difference for him. Of course, where you gain in one area, you have to struggle to gain ground in another. We have to work harder to keep the weight on due to all the exercise and sports. How is your daughter doing? Gala, mom of Logan 13 w/cf --- c hoff cjohoff@...> wrote: > Welcome!How is your son doing? I'm sure this group > will add to your support because their a great bunch > of people. > Cathy mom of 19 w/cf __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 Welcome to the list. Where do you live? Jen Mommy of 7, 3 with CF (in TN) > Hello everyone.! I am a new member. I have 2 kids, a 13 year old son > and a 10 year old daughter. My son was diagnosed with CF at the age > of 3 mos. We have been very fortunate to have had a great support > team of doctors, family, and friends. I'm looking forward to hearing > from you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi Jen, My family and I live in Ark. --- ron88jen@... wrote: > Welcome to the list. Where do you live? > Jen > Mommy of 7, 3 with CF (in TN) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Gala, Where are you in Arkansas? I am in Arkansas. Christy Mom to Mackenzie 4 w/cf and Peyton 1 w/o cff Re: Re: Introduction Hi Jen, My family and I live in Ark. --- ron88jen@... wrote: > Welcome to the list. Where do you live? > Jen > Mommy of 7, 3 with CF (in TN) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Gala ; Welcome to our list; I think my post got fowled up last time I sent it, or maybe I just got it fowled up, but it didn't say what I had intended, namely: WELCOME; this is just the best, most comforting, informative and supportive list; I just know that you will love it, said she bragging about all of us! Love to you and yours, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2001 Report Share Posted November 3, 2001 Hi there. I lived in Ark for 6 years as a kid. We lived outside pine bluff....actually, right near Grady (try to find that on the map) on Cummins Prison Farm (Dad was commisioner of corrections...I was not an inmate in kindergarten, lol)- Anyway, nice state. Do you have to go all the way to little rock for clinic? (or maybe you live there making it much more convenient.) Welcome to the list. Jen -- In cfparents@y..., Gala wrote: > Hi Jen, > > My family and I live in Ark. > > > > > > > > > --- ron88jen@a... wrote: > > Welcome to the list. Where do you live? > > Jen > > Mommy of 7, 3 with CF (in TN) > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Welcom, , and Alyssa! Thank you for joining us. I hope your family is doing well and I encourage you NOT to feel guilty! We all carry genes that our kids may or may not inherit, and if you really think about it, there may have been kids and adults who died of lung disease in each of your families on both sides and not much was made of it, as cf was not commonly known, and illness was. Our kids are very fortunate to have the parents who are on this list! Love to you and all of yours, n Rojas wcf, mom of 3 adults, youngest wcf--all doing pretty well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 Hi ! Welcome. My son is 14 months old and was diagnosed in July of this year. We felt the same way at first, about the genetics thing -- still felt guilty even though we can't help passing on genes! Denial is a pretty powerful thing, too. I'm glad your son is doing well. I hope kindergarten goes more smoothly. Hey, at least now you know what to advocate for and what the issues will probably be. mama to 1 yo w/CF and 3 yo woCF > From: ck570@... > > Hi.My name is . I have a 5yr.old boy with C.f. and a daughter > 6.5yrs. old who doesn't haveC.F. My son was diagnosed with the blood > they took from his heel while in the nursery. They ran some sweat > tests and those all came back positive about 2 months later. We were > shocked as C.F. never before showed up in either side of the family. > We started to do research as soon as we got that first word. How > could this happen? What did we do wrong? Was it when I went out > with an evening with some friends? At that time I didn't know that I > was pregnant. If I knew then I wouldn't have had those couple of > drinks. Was it all the X-rays we experienced during my last > trimester of pregnancy. Or maybe it was possible that I was around > too much smokers. Ashma? My grandmother has episodes of that so > maybe our son was misdiagnosed. NO,NO,NO,NO,NO, the doctors kept > saying. I didn't do anything wrong. We were in denial (and sometimes > I think we still are)for a long time. It is all in the genetics. > Thanks to Dr. , our son is doing very well at this time. Our > family still forgets that he has C.F. so they need to be reminded of > the enzymes and the ciggarettes. He was also enrolled in a Head > Start program but they weren't taking his health seriously. There > was another child with C.F. there and they were coming into contact > with each other on several occasions that I saw. So, just how often > were they letting this go on? They knew that these 2 couldn't be > around one another yet they let it happen. The last straw for me was > when the bus went right past us on the first day of his 2nd year out > there. Found out that the other little one was riding that bus. I > asked them ahead of time if this was the correct bus since he didn't > ride it last year. The other one with C.F. did. Come to find out, > guess who was on that bus? The other little one. They were even > going to make me provide other transportation for days that my son > was on his TOBI treatments. During these days we wouldn't get done > doing treatments until almost 9:oo and the bus would be here 15 > minutes before that. After pulling him out I found out that they > needed to provide special transportation because this fell under a > disibility. It wasn't like we were goofing off and missed the bus. I > get myself so worked up over this issue that I'm so afraid what > Kindergarten and the whole school thing will bring. I guess that's > enough for now but I'll stay in touch. My e-mail is > ck570@... w/ and Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 > Hi all, my name is . I had Open RNY bypass on Feb. 1,1999 > I started at 326lbs, I am now at about 220lbs. I am not happy with my > result at all. ly I am quite afraid. Right now I am in a > carbohydrate mold. I can't seem to get full. I had this surgery with > the expectation of not being able to eat sweets or a lot of fatty > foods without getting sick. But that is not the case, I can eat > anything, candy, cake, fried chicken, fried anthing, and it don't > bother me at all. I am very dissapointed with this surgery on that > part. Don't get me wrong, I feel much better and look much better > than I did before surgery but I was expecting to at least get under > 200lbs. I would do this surgery again in a heart beat. I am 5'6 and > I wear a size 18 and some 16 and pants, large and extra large and > sweaters. I am afraid my time is running out. That so call window > I keep reading about. It will be two years for me soon. I know > what my problem is but I just can't seem to get my act together. > To be honest I did not have self control before surgery, and I > certainly do not have it now. I am so afraid of failing this just > like all the diets I have been on. Can someone Please tell me how to > get back on track. Is there a pill, or something. , that's another one of those 'head in the sand' things. People all told me before my surgery last year that I wouldn't be able to eat sweets or bread, or friend chicken and I can. I eat all those things in moderation. I too have lost weight since my surgery (175lbs) but am not satisfied yet. IMO the key to people like us is exercise. Don't try to kill yourself or anything, but we cannot (let me repeat that CANNOT) use this surgery to dictate what we can or cannot eat. We still have to use good judgement and exercise to help get rid of the lbs. Girlfriend, meet me at the Y for water aerobics. ;-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 > Hi all, my name is . I had Open RNY bypass on Feb. 1,1999 > I started at 326lbs, I am now at about 220lbs. I am not happy with my > result at all. ly I am quite afraid. Right now I am in a > carbohydrate mold. I can't seem to get full. I had this surgery with > the expectation of not being able to eat sweets or a lot of fatty > foods without getting sick. But that is not the case, I can eat > anything, candy, cake, fried chicken, fried anthing, and it don't > bother me at all. I am very dissapointed with this surgery on that > part. Don't get me wrong, I feel much better and look much better > than I did before surgery but I was expecting to at least get under > 200lbs. I would do this surgery again in a heart beat. I am 5'6 and > I wear a size 18 and some 16 and pants, large and extra large and > sweaters. I am afraid my time is running out. That so call window > I keep reading about. It will be two years for me soon. I know > what my problem is but I just can't seem to get my act together. > To be honest I did not have self control before surgery, and I > certainly do not have it now. I am so afraid of failing this just > like all the diets I have been on. Can someone Please tell me how to > get back on track. Is there a pill, or something. , that's another one of those 'head in the sand' things. People all told me before my surgery last year that I wouldn't be able to eat sweets or bread, or friend chicken and I can. I eat all those things in moderation. I too have lost weight since my surgery (175lbs) but am not satisfied yet. IMO the key to people like us is exercise. Don't try to kill yourself or anything, but we cannot (let me repeat that CANNOT) use this surgery to dictate what we can or cannot eat. We still have to use good judgement and exercise to help get rid of the lbs. Girlfriend, meet me at the Y for water aerobics. ;-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Dear Vernonica, I started at 324 on 11/22/99 and so far I have just managed to hit 196 -- like you, it is not turning out that I am " thin " post the surgery... though my friends tell me that I definitely look MUCH better and life is definitely much easier at a size 12 than it was not being to fit in 28Ws even! But, like you, a part of me is very disappointed. I thought, like you, I would do this surgery and work hard at it (which I think I did) and be fixed. I thought I would be one of those people going bikini shopping! Like you, too, I would do this again in a second. I do not have ANY regrets. I am grateful that this surgery exists and that I had the courage to have it done. Still I want to be thin! What I finally realized (and think you are realizing) is that if that is your goal you are going to have to work at it..and work hard at it. I just wanted you to know that you are not alone. Best of luck. se In a message dated Sun, 30 Dec 2001 9:40:58 PM Eastern Standard Time, " veronicajeffery49015 " veronicajeffery@...> writes: > Hi all, my name is . I had Open RNY bypass on Feb. 1,1999 > I started at 326lbs, I am now at about 220lbs. I am not happy with my > result at all. ly I am quite afraid. Right now I am in a > carbohydrate mold. I can't seem to get full. I had this surgery with > the expectation of not being able to eat sweets or a lot of fatty > foods without getting sick. But that is not the case, I can eat > anything, candy, cake, fried chicken, fried anthing, and it don't > bother me at all. I am very dissapointed with this surgery on that > part. Don't get me wrong, I feel much better and look much better > than I did before surgery but I was expecting to at least get under > 200lbs. I would do this surgery again in a heart beat. I am 5'6 and > I wear a size 18 and some 16 and pants, large and extra large and > sweaters. I am afraid my time is running out. That so call window > I keep reading about. It will be two years for me soon. I know > what my problem is but I just can't seem to get my act together. > To be honest I did not have self control before surgery, and I > certainly do not have it now. I am so afraid of failing this just > like all the diets I have been on. Can someone Please tell me how to > get back on track. Is there a pill, or something. > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Dear Vernonica, I started at 324 on 11/22/99 and so far I have just managed to hit 196 -- like you, it is not turning out that I am " thin " post the surgery... though my friends tell me that I definitely look MUCH better and life is definitely much easier at a size 12 than it was not being to fit in 28Ws even! But, like you, a part of me is very disappointed. I thought, like you, I would do this surgery and work hard at it (which I think I did) and be fixed. I thought I would be one of those people going bikini shopping! Like you, too, I would do this again in a second. I do not have ANY regrets. I am grateful that this surgery exists and that I had the courage to have it done. Still I want to be thin! What I finally realized (and think you are realizing) is that if that is your goal you are going to have to work at it..and work hard at it. I just wanted you to know that you are not alone. Best of luck. se In a message dated Sun, 30 Dec 2001 9:40:58 PM Eastern Standard Time, " veronicajeffery49015 " veronicajeffery@...> writes: > Hi all, my name is . I had Open RNY bypass on Feb. 1,1999 > I started at 326lbs, I am now at about 220lbs. I am not happy with my > result at all. ly I am quite afraid. Right now I am in a > carbohydrate mold. I can't seem to get full. I had this surgery with > the expectation of not being able to eat sweets or a lot of fatty > foods without getting sick. But that is not the case, I can eat > anything, candy, cake, fried chicken, fried anthing, and it don't > bother me at all. I am very dissapointed with this surgery on that > part. Don't get me wrong, I feel much better and look much better > than I did before surgery but I was expecting to at least get under > 200lbs. I would do this surgery again in a heart beat. I am 5'6 and > I wear a size 18 and some 16 and pants, large and extra large and > sweaters. I am afraid my time is running out. That so call window > I keep reading about. It will be two years for me soon. I know > what my problem is but I just can't seem to get my act together. > To be honest I did not have self control before surgery, and I > certainly do not have it now. I am so afraid of failing this just > like all the diets I have been on. Can someone Please tell me how to > get back on track. Is there a pill, or something. > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Welcome to our group Darci I am sure you will love this group. I have three girls and two of them have CF. We found out when my oldest was 6 years old and my youngest was 1 they are now 9 and 4. My oldest also has lot of problems with he sinuses. We had our second surgery to remove polyps this summer. Where do you live? We are in Iowa. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Darci, Welcome to the list, take care. , mommy of 4, , almost 17 and wanting her license, so Jersey drivers beware, Caleb, 7 and acting as the man of the house until his daddy gets home from overseas, , almost 6, my budding artist, draws and colors everything in site, and I do mean everything, and , 2 1/2, with great blue eyes, a mischievious smile, and personality plus (lets just say he is stuck in the terrible twos and loves it) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Welcome to the list. Your experience will be valuable and appreciated. :-) Dawn mom of 4, 6 and under, the youngest wcf introduction > hello people, > > My name is Darci and I live in Nevada. I am on another list as well so some may know me from there. I have a 7yr. old son with CF. We found out at 2 days old as he had meconium Illieus. He has had 1 surgery on his gut since then. > > He grew out PA at 3 and he has never fgown it since. He got croup really, then turned to pneumonia, to PA in a matter of 3 weeks. He also had reflux and grew out Aspergillus. So we went to 5 diagnoses in about 2 months. This was when he was 3. That was a rough year for us. > > Today, He is on the 75th for height and 95th for weight. He lost 5 pounds, which was a good thing as he starting to get really chubby. He was on the -10th for weight at birth so we have come along way. > > He blow average on his spirometry tests and seems to be pretty good lung wise. > > He has sever sinus problems. they started when he was 4 1/2. we do sinus rinses with the rhinoflow and once a month do Tobramycin. > > We go for his second sinus surgery at Lucille Packard in CA next week. He is completely blocked again on both sides. The tobramyci is not even working anymore so it is time to get him in. > > He has 2 siblings that do not have CF. I remarried and my husband was tested. It showed he is not a carrier. I am a Social Worker and work part time. > > Other than that he plays football and baseball and is in the first grade like any ordinary kid. I am going to put pictures up soon. > > So please e-mail me as I had to go through all the meds, CPT (by hand) at 3 months of age, or anything else you may think of. > > Love to all, > Darci > Mother of wcf, Brayden 3wocf, and Mackenzie 3mo wocf. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 welcome Darci, yOU'LL LOVE IT HERE TOO. gREAT YOUR ABOARD love, grdmbev Re: introduction Welcome to the list. Your experience will be valuable and appreciated. :-) Dawn mom of 4, 6 and under, the youngest wcf introduction > hello people, > > My name is Darci and I live in Nevada. I am on another list as well so some may know me from there. I have a 7yr. old son with CF. We found out at 2 days old as he had meconium Illieus. He has had 1 surgery on his gut since then. > > He grew out PA at 3 and he has never fgown it since. He got croup really, then turned to pneumonia, to PA in a matter of 3 weeks. He also had reflux and grew out Aspergillus. So we went to 5 diagnoses in about 2 months. This was when he was 3. That was a rough year for us. > > Today, He is on the 75th for height and 95th for weight. He lost 5 pounds, which was a good thing as he starting to get really chubby. He was on the -10th for weight at birth so we have come along way. > > He blow average on his spirometry tests and seems to be pretty good lung wise. > > He has sever sinus problems. they started when he was 4 1/2. we do sinus rinses with the rhinoflow and once a month do Tobramycin. > > We go for his second sinus surgery at Lucille Packard in CA next week. He is completely blocked again on both sides. The tobramyci is not even working anymore so it is time to get him in. > > He has 2 siblings that do not have CF. I remarried and my husband was tested. It showed he is not a carrier. I am a Social Worker and work part time. > > Other than that he plays football and baseball and is in the first grade like any ordinary kid. I am going to put pictures up soon. > > So please e-mail me as I had to go through all the meds, CPT (by hand) at 3 months of age, or anything else you may think of. > > Love to all, > Darci > Mother of wcf, Brayden 3wocf, and Mackenzie 3mo wocf. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 Hi Darci, Sounds like is one tough cookie....! Mom to Elliot 11mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 He tries to be. We have gone through a lot together. he is starting to ask a lot of questions at this age. I am honest enough for a 7 year old to understand. Thanks for the nice welcome. Darci Re: introduction > Hi Darci, > Sounds like is one tough cookie....! > > > Mom to Elliot > 11mths wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 Thanks Grandma Bev!! The the best. I didn't know you taught cheerleading. I cheered throughout high school. Maybe that is why we are always so peppy!!! Darci introduction > > > > hello people, > > > > My name is Darci and I live in Nevada. I am on another list as well so > some may know me from there. I have a 7yr. old son with CF. We found out > at 2 days old as he had meconium Illieus. He has had 1 surgery on his gut > since then. > > > > He grew out PA at 3 and he has never fgown it since. He got croup really, > then turned to pneumonia, to PA in a matter of 3 weeks. He also had reflux > and grew out Aspergillus. So we went to 5 diagnoses in about 2 months. This > was when he was 3. That was a rough year for us. > > > > Today, He is on the 75th for height and 95th for weight. He lost 5 > pounds, which was a good thing as he starting to get really chubby. He was > on the -10th for weight at birth so we have come along way. > > > > He blow average on his spirometry tests and seems to be pretty good lung > wise. > > > > He has sever sinus problems. they started when he was 4 1/2. we do sinus > rinses with the rhinoflow and once a month do Tobramycin. > > > > We go for his second sinus surgery at Lucille Packard in CA next week. He > is completely blocked again on both sides. The tobramyci is not even > working anymore so it is time to get him in. > > > > He has 2 siblings that do not have CF. I remarried and my husband was > tested. It showed he is not a carrier. I am a Social Worker and work part > time. > > > > Other than that he plays football and baseball and is in the first grade > like any ordinary kid. I am going to put pictures up soon. > > > > So please e-mail me as I had to go through all the meds, CPT (by hand) at > 3 months of age, or anything else you may think of. > > > > Love to all, > > Darci > > Mother of wcf, Brayden 3wocf, and Mackenzie 3mo wocf. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi First off....not all people with Cf become very ill...some don't even start to show that they have problems until they are teens or older.The most important thing is for him to stay active...when he gets old enough let him play sports and be normal....The more active he is the healthier he'll stay. Miss Becki YOUNGLUNG ONLINE SUPPORT www.geocities.com/younglungz Email Group www.topica.com/lists/younglung Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 you can get a cookbook for cf for free through digestive care it is called fat and loving it, it is wonderful,we found out if you had olive oil to some recipes you can really gain weight. this cookbook has a lot of helpful info.w e love it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 , Have you tried to call the cf clinic nearest you...maybe they could help you get a speedier diagnosis. I am sorry I can't help you more. CF presents itself differently in many people. I think it would be hard to say that it only looks like one thing. I wish I could be more helpful to you, Mom to Elliot 11mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 , My oldest was diagnosed at age 6 so yes it can happen. She also looks very healthy and I never dream that things like having a good appetite was a bad sign that something might be wrong. You are in a state of denial and everyone here has gone through that. This is the best place to be to talk to others that are dealing with the same things you are. After my oldest was diagnosed with a sweat test they also did a DNA testing to find what CF gene she had after that they tested my two other girls and my youngest was also diagnosed with CF. If you have any other questions feel free to ask. Deb A PS Where do you live? We are in Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi, welcome...I'm , mom to who is 16 months old with CF. We use Pancreacarb MS-4 as well. And adores A Bug's Life for treatments...we get through an albuterol neb and chest PT using it, it's long and the graphics are mesmerizing. He also currently likes Little Bear Movie and Blue's Clues. Even at 10 months, your son may be ready for these kinds of " older toddler " videos. has a three-year-old sister, so he grew up fast in lots of ways! ;-) Gotta run...welcome...oh and on the recipes, I don't have a book suggestion, but slices of avocado, oatmeal with added flax seed oil, and chunks of cheese are all popular around here. *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* mama to , 16 months old w CF and 3 years wo CF > > Reply-To: cfparents > > 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 12, 2002 Report Share Posted January 12, 2002 ((())) Welcome...and I am sorry for the reason you are here. I have to say that as far as I know, a positive sweat test is diagnostic of CF -- once your child has one positive sweat test, you can assume he has CF. I wish I could tell you they are wrong. I have gone through this same stage of denial myself, at least before the sweat test, and thought that since didn't have any pulmonary symptoms, he must not have it, or must have a very mild case, and so on. My son was diagnosed at 10 months of age (July 11, 2001). I know there are lots of parents on the list whose children were diagnosed at 2, 3 or even older. The reason for this is usually that the child is growing well, so in the absence of any obvious digestive troubles, the pulmonary difficulties get diagnosed as asthma or something similar. At least, I think this is how it often goes. Take a look at my kid with CF, on the right: http://www.dancing-bears.com/images/ktnjake.jpg not exactly what you were thinking of, in terms of CF, eh? It's different these days -- take heart, if it is CF, you will be able to get him growing great with enzymes and treat the lung symptoms promptly if they develop any further, which is *so important* for their long-term health. Knowing what is going on is key to keeping these kids healthy...this is not the same disease it was 10 or 20 years ago. OK...basics of CF...the next step would usually be for you to see someone at an accredited CF center, usually a pulmonologist. They will do a blood test to tell his mutations. It's a simple genetic inheritance so if he had a positive sweat test, he has 2 mutations, the only question is which ones are they, there are hundreds of different ones. But there is no need to test the parents because if he has CF we know that each of you are carriers. The blood test will give specifics on the type of mutation and that can sometimes correlate with whether he will need enzymes, etc. I have been told it does *not* correlate with the degree of lung involvement. But, for example, my son has two copies of the delta f508 gene. Most people with this are pancreatic insufficient and need to take enzymes to help digest the food and grow properly. Anyway, at 's first visit they did a bunch of blood work, including the gene test, liver panel, and vitamin levels. They put him on enzymes because his main symptom was oily poop and poor growth. They went over the basics of CF with us, gave us some information on nutrition and boosting calories, talked a little about what to expect in the future, did a chest x-ray and thorough physical examination, showed us how to do chest PT, set us up with and instructed us on use of a nebulizer and albuterol. Plus we met with a social worker to discuss how we were feeling about the whole thing. We got his sweat test result that morning and then went to the CF clinic after lunch and a beer. Don't ask me how we held it together emotionally for that clinic visit. I don't know. I can say that I am not riding the roller coaster of emotions as hard as in the beginning when he was first diagnosed, now almost six months ago. I could say more, but I've got to run, as it's nearly 10 and both my kids are still up, but ready for bed... *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* mama to , 16 months old w CF and 3 years wo 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...
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