Hi there, my name is Cathy Williams and I live in Plymouth, uk. I have two daughters, Annie who is seven and Olivia who is three years old. Six months ago Annie was diagnosed with cystic Fibrosis, after years of concern over growth and development, wierd poos, and what we were told was asthma. Of course once the penny dropped everything made sence, she has all the text book symptons. We are all being really positive, made easier by the way Annie has embraced all the treatment, physio etc, although Id be lieing if I did,nt tell you there are some days that the pure fear takes my breath away. I,d be interested to hear how everyone else felt at the start of this journey!
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Daughter aged seven, diagnosed six months ago.
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Hi there, my name is Cathy Williams and I live in Plymouth, uk. I have two daughters, Annie who is seven and Olivia who is three years old. Six months ago Annie was diagnosed with cystic Fibrosis, after years of concern over growth and development, wierd poos, and what we were told was asthma. Of course once the penny dropped everything made sence, she has all the text book symptons. We are all being really positive, made easier by the way Annie has embraced all the treatment, physio etc, although Id be lieing if I did,nt tell you there are some days that the pure fear takes my breath away. I,d be interested to hear how everyone else felt at the start of this journey!
Hi there, my name is Cathy Williams and I live in Plymouth, uk. I have two daughters, Annie who is seven and Olivia who is three years old. Six months ago Annie was diagnosed with cystic Fibrosis, after years of concern over growth and development, wierd poos, and what we were told was asthma. Of course once the penny dropped everything made sence, she has all the text book symptons. We are all being really positive, made easier by the way Annie has embraced all the treatment, physio etc, although Id be lieing if I did,nt tell you there are some days that the pure fear takes my breath away. I,d be interested to hear how everyone else felt at the start of this journey!
Welcome to a unique community. Sorry that it has to be with your daughters dx, but better to know and treat then to learn when its too late to help her try and keep healthy. It will be an emotional journey. There will be good days & bad for all of you. Remaining positive is important, but quite honestly not always easy to do. The treatment reqimen becomes routine (more or less) and you learn the different things that makes your childs health like when her cough is something to worry about versus the normal CF cough etc. ANY questions are welcome even if you repeat them or want a ton more responses. You are learning as even those of us dealing with it for years still are in many ways. HUGS!
Welcome to a unique community. Sorry that it has to be with your daughters dx, but better to know and treat then to learn when its too late to help her try and keep healthy. It will be an emotional journey. There will be good days & bad for all of you. Remaining positive is important, but quite honestly not always easy to do. The treatment reqimen becomes routine (more or less) and you learn the different things that makes your childs health like when her cough is something to worry about versus the normal CF cough etc. ANY questions are welcome even if you repeat them or want a ton more responses. You are learning as even those of us dealing with it for years still are in many ways. HUGS!
Welcome to a unique community. Sorry that it has to be with your daughters dx, but better to know and treat then to learn when its too late to help her try and keep healthy. It will be an emotional journey. There will be good days & bad for all of you. Remaining positive is important, but quite honestly not always easy to do. The treatment reqimen becomes routine (more or less) and you learn the different things that makes your childs health like when her cough is something to worry about versus the normal CF cough etc. ANY questions are welcome even if you repeat them or want a ton more responses. You are learning as even those of us dealing with it for years still are in many ways. HUGS!
When my daughter was first diagnosed (she's 25 now), my husband and I were in a 'fog' for about 2 years. It seemed to take that long to get completely used to the diagnosis and all the medications and treatments. As you continue to be involved in your daughter's everyday stuff, your life will feel more normal. It also gets better as children get older because they're so busy with school and friends and sports, etc. that (with some determination on our part!) it goes on the back burner instead of consuming every thought and taking over our life.
When my daughter was first diagnosed (she's 25 now), my husband and I were in a 'fog' for about 2 years. It seemed to take that long to get completely used to the diagnosis and all the medications and treatments. As you continue to be involved in your daughter's everyday stuff, your life will feel more normal. It also gets better as children get older because they're so busy with school and friends and sports, etc. that (with some determination on our part!) it goes on the back burner instead of consuming every thought and taking over our life.
When my daughter was first diagnosed (she's 25 now), my husband and I were in a 'fog' for about 2 years. It seemed to take that long to get completely used to the diagnosis and all the medications and treatments. As you continue to be involved in your daughter's everyday stuff, your life will feel more normal. It also gets better as children get older because they're so busy with school and friends and sports, etc. that (with some determination on our part!) it goes on the back burner instead of consuming every thought and taking over our life.
D
ddawes27
Guest
Cathy,
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
D
ddawes27
Guest
Cathy,
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
D
ddawes27
Guest
Cathy,
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
Oh my gosh!!.......I am going through the same thing as you! My son was diagnosed at the end of this November. He was almost 5 (he will be 5 on Sunday) I have been amazed and impressed at what a cooperative sweetie my son has been with all his new, (overwhelming to me) treatments. He has to wake up an hour early before school because he needs to do his nebulizer and his percussion vest. He was on home I.V.'s for 3 weeks and actually insisted on doing all the steps to start and discontinue the I.V. meds 3 times a day. Kids are so resilient!! Before his surgery my husband went to our M.D. to discuss stress issues, I was with him. The doctor told us that children are incredibly resislient to these things. He told us that it would be so much harder for us, than it would be on our 4 year-old son........It was so true!!
Cathy......You can talk to me anytime!!
Hi Cathy, my name is Rebecca Krienselokker, I live in Ontario, Canada. I have three children, Payton 5, Ainsley 3 and Calder 17 months.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.
Hi Cathy, my name is Rebecca Krienselokker, I live in Ontario, Canada. I have three children, Payton 5, Ainsley 3 and Calder 17 months.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.