Hi,I am the mother of two children. I have a four and a half year-old daugter and a 19 month old son who was just diagnosed with cf. I took him in for his 18 month check-up and the PA started asking me about his stools, history of wheezing when he gets a cold and his growth. He is small, 21 lbs, but he has been growing steadily. We took him in for a sweat test which came back at 92. Needless to say we are crushed. I have never even known someone with cf. I am scared, depressed and so worried. If anyone out there has some advice I would really appreciate it.Thanks!!!!!!!
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Can't believe I am here!
- Thread starter anonymous
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Hi,I am the mother of two children. I have a four and a half year-old daugter and a 19 month old son who was just diagnosed with cf. I took him in for his 18 month check-up and the PA started asking me about his stools, history of wheezing when he gets a cold and his growth. He is small, 21 lbs, but he has been growing steadily. We took him in for a sweat test which came back at 92. Needless to say we are crushed. I have never even known someone with cf. I am scared, depressed and so worried. If anyone out there has some advice I would really appreciate it.Thanks!!!!!!!
Hi! My name is Jennifer, im the mother of 3 girls ages 2, 4 and 7. The 4 and 7 yr olds both were diagnosed with CF last year. Needless to say it was a shock and very hard to swallow but the shock will wear off and you will do what has to be done, treatments, dr visits etc. I always assure myself that there is so much being done now with CF our childrens future looks brighter and brighter! If you need to chat feel free to e mail me at jenandmatt@juno.com Im sure you have tons of questions. Have they put him on medicine yet? Good luck, this site is great, lots of support here.
Hi! My name is Jennifer, im the mother of 3 girls ages 2, 4 and 7. The 4 and 7 yr olds both were diagnosed with CF last year. Needless to say it was a shock and very hard to swallow but the shock will wear off and you will do what has to be done, treatments, dr visits etc. I always assure myself that there is so much being done now with CF our childrens future looks brighter and brighter! If you need to chat feel free to e mail me at jenandmatt@juno.com Im sure you have tons of questions. Have they put him on medicine yet? Good luck, this site is great, lots of support here.
Hi,I am the mom of a 4 and a half year old girl who has CF. She was diagnosed ar 9 and a half months. While all this is quite overwhelming at first, you eventually develop a routine of meds and chest PT to go along with your everyday life. This is a good site to get help. Some other good ones are http://groups.msn.com/cysticfibrosis2chat and the CFparents group at http://groups.yahoo.com/group/cfparents both are very supportive and open to answering tough questions. Feel free to check out our site at http://groups.msn.com/teamRachelJane too. My best advice is that you get educated about CF after you get situated with meds and routines. It might help you to know that there are a lot of people out there who have CF that you could pass on the street and not even know it. We didn't know anything about Cf until our daughter was diagnosed either. Take it one step at a time and do what you need to do for your little ones.Andrea
Hi,I am the mom of a 4 and a half year old girl who has CF. She was diagnosed ar 9 and a half months. While all this is quite overwhelming at first, you eventually develop a routine of meds and chest PT to go along with your everyday life. This is a good site to get help. Some other good ones are http://groups.msn.com/cysticfibrosis2chat and the CFparents group at http://groups.yahoo.com/group/cfparents both are very supportive and open to answering tough questions. Feel free to check out our site at http://groups.msn.com/teamRachelJane too. My best advice is that you get educated about CF after you get situated with meds and routines. It might help you to know that there are a lot of people out there who have CF that you could pass on the street and not even know it. We didn't know anything about Cf until our daughter was diagnosed either. Take it one step at a time and do what you need to do for your little ones.Andrea
Hi my Name is Don.Our youngest daughter has CF. She is 2.5 years. Like you, CF was a shock for us. It had never been in our family and our older kids were healthy. The pain of the diagnosis is still there. It never goes away. But as a parent you have to rise above it and fight the disease. So far we are winning. Our daughter was extremely sick. They gave us no gurantee of her leaving the hospital or any quality of life. She has been "non symptomatic" for 14 months now. Prior to that she was admitted for 3 days for RSV. So really she has done well for nearly 22 months. She is a real "card" and pushes our buttons regularly.It is important for you to learn all you can about CF and your son. Ask questions... Then ask more questions. Please email if you have any questions or need more advice. We have a family website with a section devoted to CF. You are invited to visit. I pray all goes well for you. This is a tough thing.http://donpatin.tripod.com/patinfamily/index.html
Hi my Name is Don.Our youngest daughter has CF. She is 2.5 years. Like you, CF was a shock for us. It had never been in our family and our older kids were healthy. The pain of the diagnosis is still there. It never goes away. But as a parent you have to rise above it and fight the disease. So far we are winning. Our daughter was extremely sick. They gave us no gurantee of her leaving the hospital or any quality of life. She has been "non symptomatic" for 14 months now. Prior to that she was admitted for 3 days for RSV. So really she has done well for nearly 22 months. She is a real "card" and pushes our buttons regularly.It is important for you to learn all you can about CF and your son. Ask questions... Then ask more questions. Please email if you have any questions or need more advice. We have a family website with a section devoted to CF. You are invited to visit. I pray all goes well for you. This is a tough thing.http://donpatin.tripod.com/patinfamily/index.html
Our daughter was diagnosed at 2 months after being admitted for failure to thrive. The initial shock is devastating and it takes a while to get used to this way of life. The first year is the hardest and then it just becomes part of your daily life. There is a lot of research being done and I am certain that one day there will be a cure. Keep a positive attitude and remember that this is a tough time but there are better days ahead. Make it a condition and not a disease. I have found one other parent that I connect with and we share our experiences. This has been a great advantage for both families.Ask questions to your doctors, inform yourself and listen to your child.You will get through this and it will make you stronger!
Hi - I am also the mom of two. I have an eight year old and a five year old boy. The five year old has cf. He was diagnosed at 18 months. As everyone has said it is quite a shock and quite an adjustment. At first it is overwhelmingly overwhelming. It definately gets to a managable level. It has also taught our family to really appreciate each day. Sometimes an illness is a wake up call for many of us to really enjoy life. I would be happy to answer any questions you might have since your diagnosis age and my son's is the same. I have found that these message boards are a wealth of support and information. There are some pretty amazing individuals out there with great words of wisdom or even just someone who can understand exactly what you are feeling. In my experiece, knowledge seems to help with some of the fear. You can email me at tjtj8@comcast.net or post back here. Take care!Jo Ann
Hi. I am the mother of two children and my youngest has CF. He is 13months. A lot of the information is new to us too. I can tell you that there is real power in reading. Read only current information because this disease has seen great progress in recent years. Get ready to be routine about treatments and they will become a noraml part of your day like brushing your teeth. We look at CF as a part of who our son is but never a definig feature. His body simply has differnt needs than ours. Diagnosing our son was seen as an opportunity to help him. For the first time we understood his needs and could help him. He is an awesom kid who happens to have CF. I think establishing a relationship with the staff at the CF center has also made a huge difference. These are the people that will teach you and someday your child how to grow old and healthy. Make a team out everyone. Treat him like any child and he will grow up strong and capable. You can do this!