Congrats on your soon to be born baby! I'm sorry to hear about the diagnosis, but so glad you found this site. My daughter was diagnosed at 6 days old and sometimes I wish we had known before she was born. After she was diagnosed and put on enzymes and zantac, Maggie was just a happier baby and I feel terrible that I thought she was just super fussy when really she was suffering. <br>Life is different with CF, but it is still a lot of fun. Maggie lives a pretty normal life aside from treatments and since she was diagnosed so young, she doesn't know any different. She takes pills like a champ!<br>Definitely meet with the CF team if you haven't already and learn everything you can now. You are doing great so far and I'm sure you will take great care of this baby. <br>
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S
Smilelee
Guest
Thank you all so much for your responses! I already feel better knowing I can come here to ask questions and get the support of others going through the same things. For right now, we are still waiting to hear back from a specialist I guess to start the process of finding our baby a doctor after he is born. We live in Wilmington, NC and the nearest clinic or specialists are in Chapel Hill about 2.5 hours away.
S
Smilelee
Guest
Thank you all so much for your responses! I already feel better knowing I can come here to ask questions and get the support of others going through the same things. For right now, we are still waiting to hear back from a specialist I guess to start the process of finding our baby a doctor after he is born. We live in Wilmington, NC and the nearest clinic or specialists are in Chapel Hill about 2.5 hours away.
S
Smilelee
Guest
Thank you all so much for your responses! I already feel better knowing I can come here to ask questions and get the support of others going through the same things. For right now, we are still waiting to hear back from a specialist I guess to start the process of finding our baby a doctor after he is born. We live in Wilmington, NC and the nearest clinic or specialists are in Chapel Hill about 2.5 hours away.
S
Smilelee
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mummy09</b></i> My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina</end quote></div> </P>
<P> </P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P> </P>
<P> </P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P> </P>
S
Smilelee
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mummy09</b></i> My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina</end quote> </P>
<P></P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P></P>
<P></P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P></P>
S
Smilelee
Guest
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mummy09</b></i> My daughter was diagnosed when she was 3 weeks old. Getting diagnosed while pregnant would have been stressful its nothing compared to having a very unhappy baby. the week and a half before she was diagnosed she would be drinking a bottle and still crying and pooping. I look back at the.pictures 2 days before we got the call and they make.me sick she was very pale and sickly looking ( though at the time we didnt really think anything about as first time parents) Educate yourself about cf but be careful especiallt about stuff on the internet. my daughter has the same mutations as you. She is now 2 and doing fabulous. Enjoy your pregnancy as much ad possible. Kristina</end quote> </P>
<P></P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P></P>
<P></P>
<P>Kristina</P>
<P>Can you tell me more about the symptoms and issues your daughter has? I am so curious since you mentioned your daughter has the same mutations. I haven't found much info on a person with those two particular mutations. The geneticist who gave us the results of the amnio said that the two mutations delta f508 and n1303k are some of the more severe symptimatic (sp?) cases. I know every child reacts differently, but I would like to learn about your experiences if you don't mind sharing.</P>
<P>Thanks!!</P>
<P></P>
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
<br />The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
<br />The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
<br />I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
<br />Good luck and enjoy the rest of your pregnancy!
<br />The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
<br />The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
<br />I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
<br />Good luck and enjoy the rest of your pregnancy!
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
Good luck and enjoy the rest of your pregnancy!
We found out at 20 weeks pregnant that DS had CF. I really feel that it was a blessing to know so early. It was hard to find out but gave us so much time to research the disease and get in touch with people who knew more about it - mostly the people on here <img src="i/expressions/face-icon-small-smile.gif" border="0">.
<br />The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
<br />The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
<br />I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
<br />Good luck and enjoy the rest of your pregnancy!
<br />The first year was probably the hardest simply because there were so many things that we needed to do for Parker that we never had to do for our first born. Those things do become a habit though through time.
<br />The only thing I would recommend right away is to be at (or as near as you can be) to a Level III NICU when you deliver. I'm not sure if you have had signs of the baby having an MI or not, but from my experience it is probably best to be close to a NICU that can take care of that sort of thing if need be.
<br />I also just wanted to say that Parker is doing well. He is 4.5 years old and is doing so much better than I thought (when i was still preggo) he would be doing at this age.
<br />Good luck and enjoy the rest of your pregnancy!
Hi Smilelee,
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
Hi Smilelee,
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
Hi Smilelee,
<br />
<br />I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
<br />
<br />I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
Hi Smilelee,
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
Hi Smilelee,
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
Hi Smilelee,
<br />
<br />I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
<br />
<br />I had replied to you the other day but I just noticed it hadnt posted. I am surprised that your geneticist told you that about the 2 mutations. We were told the N1303k gene is not as common and that there hadnt been any studies. Therefore they could give us any statistics. Though I am sure that all geneticists opinons/knowledge differ, I have only ever seen.1 other person on this site witb the same 2. We live near Toronto and go to sick kids hospital, the gene was actually discovered there in 1989. So far.Alexandra is doing great. She currently on enzymes, liquid Aquadek which is a multi vitamin. We recently started her on 7% hypertonic saline, which is the best thing that we have ever done for her. She has only been on antibiotics x2. The first time she was 6 months old not because she had cultured something but it was close to Christmas and her cough and cold just seem to be getting lingering and not getting better. The 2 nd time she went on antibiotics she was 18 months and we had a clinic appointment and they said she hadnt cultured anything but I knew the nurse hadnt gotten a good swab and she had a cough that had been coming and going for 2 months. It does take her longer than average to get over a cold and the accompaning cough will usually last fir 2 weeks or so after. She is short but our whole family is defintelt not on the tall side. Her weight is excellent. She is 26 months and weighs ovef 32 lbs. She was small when she bor. 6 10 but hef sister with no cf was 6lbs 6 oz. Initially after she was born she had no.issues but by the end of her second week she was not happy. AsHet first clinic visit we started the enzymes. It took her a couple.of months to really catch up eith hef weight and ever since then there has been no problem with her weight. If we had found out when I wad pregnant it would have been so.much better and. Getting used to giving the enzymes does take getting use to. For me the worst was probably the first 3 months, but then it just becomes natural. For the last 8 or 9 months she takes the enzymes with nothing ( vs with apple sauce) I give her the pill.and she pops uit in her mouth. The Cpt definetly has its ups and down, and I should be enforcing it more. When she was 18 months we.oredered her a trampoline and.it is.great with getting things moving and shaking. The best part is that she.loves it. If you have any questions please ask I too am also curious about other kids/adults with the same.mutations. Excuse the typos my computer is down and my phone doesnt cooperate. take care kristina.
S
Smilelee
Guest
Mummy09
I am so glad to have found someone else with the same mutations. I haven't been able to find much information regarding the N1303K mutation, but the amnio results are clear DeltaF508 and N1303K. I have contacted the closest Pediatric Pulmonary clinic and they are going to schedule us a consultation to give us as much information as possible before he is born. Reading your post is definitely encouraging, your daughter sounds like she is doing very well. We have a trampoline already for our daughter, so it sounds like our son will get good use of it as well. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I look forward to keeping in touch and sharing experiences!!
Lee Ann
I am so glad to have found someone else with the same mutations. I haven't been able to find much information regarding the N1303K mutation, but the amnio results are clear DeltaF508 and N1303K. I have contacted the closest Pediatric Pulmonary clinic and they are going to schedule us a consultation to give us as much information as possible before he is born. Reading your post is definitely encouraging, your daughter sounds like she is doing very well. We have a trampoline already for our daughter, so it sounds like our son will get good use of it as well. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I look forward to keeping in touch and sharing experiences!!
Lee Ann