2.5 year old with GI symtpoms only

[izemmom]

Hello! Just wanted to join the others in welcoming you! My daughter was diagnosed at birth because of meconium illeus, so my "introduction to cf" was a bit different than yours. But, I can imagine the shock and heart-break you are feeling. You've found a good support system here.

My daughter didn't have many respitory symptoms early on, either, but we have done chest PT/vest therapy and inhaled meds EVERY DAY of her life to keep it that way. She has developed sinus troubles and just had her first sinus surgery a few weeks ago. But, other than that, she is like any other 3 1/2 year old - stubborn!

You are doing a smart thing in reaching out and seeking information. Ask all your questions at your appointment, and don't be afraid to come here if some of the answers don't quite sink in. We're here to help.

Good luck to you!

 

[izemmom]

Hello! Just wanted to join the others in welcoming you! My daughter was diagnosed at birth because of meconium illeus, so my "introduction to cf" was a bit different than yours. But, I can imagine the shock and heart-break you are feeling. You've found a good support system here.

My daughter didn't have many respitory symptoms early on, either, but we have done chest PT/vest therapy and inhaled meds EVERY DAY of her life to keep it that way. She has developed sinus troubles and just had her first sinus surgery a few weeks ago. But, other than that, she is like any other 3 1/2 year old - stubborn!

You are doing a smart thing in reaching out and seeking information. Ask all your questions at your appointment, and don't be afraid to come here if some of the answers don't quite sink in. We're here to help.

Good luck to you!

 

[izemmom]

Hello! Just wanted to join the others in welcoming you! My daughter was diagnosed at birth because of meconium illeus, so my "introduction to cf" was a bit different than yours. But, I can imagine the shock and heart-break you are feeling. You've found a good support system here.

My daughter didn't have many respitory symptoms early on, either, but we have done chest PT/vest therapy and inhaled meds EVERY DAY of her life to keep it that way. She has developed sinus troubles and just had her first sinus surgery a few weeks ago. But, other than that, she is like any other 3 1/2 year old - stubborn!

You are doing a smart thing in reaching out and seeking information. Ask all your questions at your appointment, and don't be afraid to come here if some of the answers don't quite sink in. We're here to help.

Good luck to you!

 

[izemmom]

Hello! Just wanted to join the others in welcoming you! My daughter was diagnosed at birth because of meconium illeus, so my "introduction to cf" was a bit different than yours. But, I can imagine the shock and heart-break you are feeling. You've found a good support system here.

My daughter didn't have many respitory symptoms early on, either, but we have done chest PT/vest therapy and inhaled meds EVERY DAY of her life to keep it that way. She has developed sinus troubles and just had her first sinus surgery a few weeks ago. But, other than that, she is like any other 3 1/2 year old - stubborn!

You are doing a smart thing in reaching out and seeking information. Ask all your questions at your appointment, and don't be afraid to come here if some of the answers don't quite sink in. We're here to help.

Good luck to you!

 

[izemmom]

Hello! Just wanted to join the others in welcoming you! My daughter was diagnosed at birth because of meconium illeus, so my "introduction to cf" was a bit different than yours. But, I can imagine the shock and heart-break you are feeling. You've found a good support system here.
<br />
<br />My daughter didn't have many respitory symptoms early on, either, but we have done chest PT/vest therapy and inhaled meds EVERY DAY of her life to keep it that way. She has developed sinus troubles and just had her first sinus surgery a few weeks ago. But, other than that, she is like any other 3 1/2 year old - stubborn!
<br />
<br />You are doing a smart thing in reaching out and seeking information. Ask all your questions at your appointment, and don't be afraid to come here if some of the answers don't quite sink in. We're here to help.
<br />
<br />Good luck to you!

 

[grassisgreener]

Hi, I understand the shock of the dx. My daughter Sydney (now 6wcf) was dx at 12 months old, it was a huge shock to us. She hasn't had much respiratory trouble yet, just sinus and digestive. Sydney goes to Riley and we have been very happy with the care. You can read more about Sydney at her blog: <a target=_blank class=ftalternatingbarlinklarge href="http://www.oursaltygirl.blogspot.com/">http://www.oursaltygirl.blogspot.com/</a> although I haven't updated her blog in awhile, that is because there hasn't been any CF News and we have been super busy this summer <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I am sorry to hear about the diagnosis but I think you will find that there are many good treatments available (and some VERY promising treatments in the research pipeline) which means there is alot of hope for the future.

Oh ya, once you get settled in with the diagnosis, you may want to call or email your local Cystic Fibrosis Foundation office, which I am guessing would be the Indiana Chapter. They are a wonderful group of people to work with when you are ready to get involved and they have events all over the state. You can find more about them at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters/indiana/
">http://www.cff.org/chapters/indiana/
</a>
Best Wishes,
Kelli - mom of Sydney 6wcf and Drew 3nocf

 

[grassisgreener]

Hi, I understand the shock of the dx. My daughter Sydney (now 6wcf) was dx at 12 months old, it was a huge shock to us. She hasn't had much respiratory trouble yet, just sinus and digestive. Sydney goes to Riley and we have been very happy with the care. You can read more about Sydney at her blog: <a target=_blank class=ftalternatingbarlinklarge href="http://www.oursaltygirl.blogspot.com/">http://www.oursaltygirl.blogspot.com/</a> although I haven't updated her blog in awhile, that is because there hasn't been any CF News and we have been super busy this summer <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I am sorry to hear about the diagnosis but I think you will find that there are many good treatments available (and some VERY promising treatments in the research pipeline) which means there is alot of hope for the future.

Oh ya, once you get settled in with the diagnosis, you may want to call or email your local Cystic Fibrosis Foundation office, which I am guessing would be the Indiana Chapter. They are a wonderful group of people to work with when you are ready to get involved and they have events all over the state. You can find more about them at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters/indiana/
">http://www.cff.org/chapters/indiana/
</a>
Best Wishes,
Kelli - mom of Sydney 6wcf and Drew 3nocf

 

[grassisgreener]

Hi, I understand the shock of the dx. My daughter Sydney (now 6wcf) was dx at 12 months old, it was a huge shock to us. She hasn't had much respiratory trouble yet, just sinus and digestive. Sydney goes to Riley and we have been very happy with the care. You can read more about Sydney at her blog: <a target=_blank class=ftalternatingbarlinklarge href="http://www.oursaltygirl.blogspot.com/">http://www.oursaltygirl.blogspot.com/</a> although I haven't updated her blog in awhile, that is because there hasn't been any CF News and we have been super busy this summer <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I am sorry to hear about the diagnosis but I think you will find that there are many good treatments available (and some VERY promising treatments in the research pipeline) which means there is alot of hope for the future.

Oh ya, once you get settled in with the diagnosis, you may want to call or email your local Cystic Fibrosis Foundation office, which I am guessing would be the Indiana Chapter. They are a wonderful group of people to work with when you are ready to get involved and they have events all over the state. You can find more about them at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters/indiana/
">http://www.cff.org/chapters/indiana/
</a>
Best Wishes,
Kelli - mom of Sydney 6wcf and Drew 3nocf

 

[grassisgreener]

Hi, I understand the shock of the dx. My daughter Sydney (now 6wcf) was dx at 12 months old, it was a huge shock to us. She hasn't had much respiratory trouble yet, just sinus and digestive. Sydney goes to Riley and we have been very happy with the care. You can read more about Sydney at her blog: <a target=_blank class=ftalternatingbarlinklarge href="http://www.oursaltygirl.blogspot.com/">http://www.oursaltygirl.blogspot.com/</a> although I haven't updated her blog in awhile, that is because there hasn't been any CF News and we have been super busy this summer <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, I am sorry to hear about the diagnosis but I think you will find that there are many good treatments available (and some VERY promising treatments in the research pipeline) which means there is alot of hope for the future.

Oh ya, once you get settled in with the diagnosis, you may want to call or email your local Cystic Fibrosis Foundation office, which I am guessing would be the Indiana Chapter. They are a wonderful group of people to work with when you are ready to get involved and they have events all over the state. You can find more about them at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters/indiana/
">http://www.cff.org/chapters/indiana/
</a>
Best Wishes,
Kelli - mom of Sydney 6wcf and Drew 3nocf

 

[grassisgreener]

Hi, I understand the shock of the dx. My daughter Sydney (now 6wcf) was dx at 12 months old, it was a huge shock to us. She hasn't had much respiratory trouble yet, just sinus and digestive. Sydney goes to Riley and we have been very happy with the care. You can read more about Sydney at her blog: <a target=_blank class=ftalternatingbarlinklarge href="http://www.oursaltygirl.blogspot.com/">http://www.oursaltygirl.blogspot.com/</a> although I haven't updated her blog in awhile, that is because there hasn't been any CF News and we have been super busy this summer <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Anyway, I am sorry to hear about the diagnosis but I think you will find that there are many good treatments available (and some VERY promising treatments in the research pipeline) which means there is alot of hope for the future.
<br />
<br />Oh ya, once you get settled in with the diagnosis, you may want to call or email your local Cystic Fibrosis Foundation office, which I am guessing would be the Indiana Chapter. They are a wonderful group of people to work with when you are ready to get involved and they have events all over the state. You can find more about them at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters/indiana/
">http://www.cff.org/chapters/indiana/
</a><br />
<br />Best Wishes,
<br />Kelli - mom of Sydney 6wcf and Drew 3nocf

 

[JennyCoulon]

Welcome, I am the mother of a 9 year old boy and a 4 year old boy both with CF. Both of them only have the GI symptoms. They were both diagnosed at birth and have very mild lung involvement. I know it is hard to get the diagnoses but you will find that there are a lot of people on here that have dealt with CF for a short time as well as a long time. I think that you will find this site very helpful thru your journey. Let me know if there is anything that we can help with. Thanks

 

[JennyCoulon]

Welcome, I am the mother of a 9 year old boy and a 4 year old boy both with CF. Both of them only have the GI symptoms. They were both diagnosed at birth and have very mild lung involvement. I know it is hard to get the diagnoses but you will find that there are a lot of people on here that have dealt with CF for a short time as well as a long time. I think that you will find this site very helpful thru your journey. Let me know if there is anything that we can help with. Thanks

 

[JennyCoulon]

Welcome, I am the mother of a 9 year old boy and a 4 year old boy both with CF. Both of them only have the GI symptoms. They were both diagnosed at birth and have very mild lung involvement. I know it is hard to get the diagnoses but you will find that there are a lot of people on here that have dealt with CF for a short time as well as a long time. I think that you will find this site very helpful thru your journey. Let me know if there is anything that we can help with. Thanks

 

[JennyCoulon]

Welcome, I am the mother of a 9 year old boy and a 4 year old boy both with CF. Both of them only have the GI symptoms. They were both diagnosed at birth and have very mild lung involvement. I know it is hard to get the diagnoses but you will find that there are a lot of people on here that have dealt with CF for a short time as well as a long time. I think that you will find this site very helpful thru your journey. Let me know if there is anything that we can help with. Thanks

 

[JennyCoulon]

Welcome, I am the mother of a 9 year old boy and a 4 year old boy both with CF. Both of them only have the GI symptoms. They were both diagnosed at birth and have very mild lung involvement. I know it is hard to get the diagnoses but you will find that there are a lot of people on here that have dealt with CF for a short time as well as a long time. I think that you will find this site very helpful thru your journey. Let me know if there is anything that we can help with. Thanks

 

[dlo2977]

We went for our first appointment today and Ava got her first dose of Creon with dinner tonight! It was kind of a "non-official" visit with the doctor only just to get her started. We will go to the CF Center next week and meet with the whole staff and get her started on the vest. We also discussed getting her in a clinical trial at Riley with the hypertonic saline. Her bloodwork was perfect and her chest rads looked normal as well. I am feeling a little better and more optimistic today which is good. Ava's little brother (1 month old) had a totally normal newborn screen, so he will still have a sweat test this month but it is looking like he will not have CF (we will keep our fingers crossed). Thanks to all for the support. Our friends and family have been absolutely wonderful but it is nice to communicate with people who are in our shoes.

 

[dlo2977]

We went for our first appointment today and Ava got her first dose of Creon with dinner tonight! It was kind of a "non-official" visit with the doctor only just to get her started. We will go to the CF Center next week and meet with the whole staff and get her started on the vest. We also discussed getting her in a clinical trial at Riley with the hypertonic saline. Her bloodwork was perfect and her chest rads looked normal as well. I am feeling a little better and more optimistic today which is good. Ava's little brother (1 month old) had a totally normal newborn screen, so he will still have a sweat test this month but it is looking like he will not have CF (we will keep our fingers crossed). Thanks to all for the support. Our friends and family have been absolutely wonderful but it is nice to communicate with people who are in our shoes.

 

[dlo2977]

We went for our first appointment today and Ava got her first dose of Creon with dinner tonight! It was kind of a "non-official" visit with the doctor only just to get her started. We will go to the CF Center next week and meet with the whole staff and get her started on the vest. We also discussed getting her in a clinical trial at Riley with the hypertonic saline. Her bloodwork was perfect and her chest rads looked normal as well. I am feeling a little better and more optimistic today which is good. Ava's little brother (1 month old) had a totally normal newborn screen, so he will still have a sweat test this month but it is looking like he will not have CF (we will keep our fingers crossed). Thanks to all for the support. Our friends and family have been absolutely wonderful but it is nice to communicate with people who are in our shoes.

 

[dlo2977]

We went for our first appointment today and Ava got her first dose of Creon with dinner tonight! It was kind of a "non-official" visit with the doctor only just to get her started. We will go to the CF Center next week and meet with the whole staff and get her started on the vest. We also discussed getting her in a clinical trial at Riley with the hypertonic saline. Her bloodwork was perfect and her chest rads looked normal as well. I am feeling a little better and more optimistic today which is good. Ava's little brother (1 month old) had a totally normal newborn screen, so he will still have a sweat test this month but it is looking like he will not have CF (we will keep our fingers crossed). Thanks to all for the support. Our friends and family have been absolutely wonderful but it is nice to communicate with people who are in our shoes.

 

[dlo2977]

We went for our first appointment today and Ava got her first dose of Creon with dinner tonight! It was kind of a "non-official" visit with the doctor only just to get her started. We will go to the CF Center next week and meet with the whole staff and get her started on the vest. We also discussed getting her in a clinical trial at Riley with the hypertonic saline. Her bloodwork was perfect and her chest rads looked normal as well. I am feeling a little better and more optimistic today which is good. Ava's little brother (1 month old) had a totally normal newborn screen, so he will still have a sweat test this month but it is looking like he will not have CF (we will keep our fingers crossed). Thanks to all for the support. Our friends and family have been absolutely wonderful but it is nice to communicate with people who are in our shoes.