Just diagnosed

[ktsmom]

Hi Kimberly -

Don't beat yourself up about not being pushier with the docs. There are many of us on here that had similar situations - the doctors wouldn't listen and wrote us off as hysterical moms. The good news is that your son will now be getting the treatment he needs.

I especially appreciated your comment about keeping your own composure so that your son doesn't worry. My youngest daughter was diagnosed 10 months ago and my oldest daughter has now watched both her mom and dad break down and cry in front of her. But she has really taken up the cause of CF and could (and will!) explain Katy's treatments and meds to anyone that will listen.

It will just integrate into who you all are, but it will take some time. Please keep us posted on how everything goes. Check out the Families section - you will find lots of support from moms who have been just where you are. Many of us still break down, but mostly we have figured out how to get on with the business of living! Hugs and strength to you!

 

[ktsmom]

Hi Kimberly -

Don't beat yourself up about not being pushier with the docs. There are many of us on here that had similar situations - the doctors wouldn't listen and wrote us off as hysterical moms. The good news is that your son will now be getting the treatment he needs.

I especially appreciated your comment about keeping your own composure so that your son doesn't worry. My youngest daughter was diagnosed 10 months ago and my oldest daughter has now watched both her mom and dad break down and cry in front of her. But she has really taken up the cause of CF and could (and will!) explain Katy's treatments and meds to anyone that will listen.

It will just integrate into who you all are, but it will take some time. Please keep us posted on how everything goes. Check out the Families section - you will find lots of support from moms who have been just where you are. Many of us still break down, but mostly we have figured out how to get on with the business of living! Hugs and strength to you!

 

[ktsmom]

Hi Kimberly -

Don't beat yourself up about not being pushier with the docs. There are many of us on here that had similar situations - the doctors wouldn't listen and wrote us off as hysterical moms. The good news is that your son will now be getting the treatment he needs.

I especially appreciated your comment about keeping your own composure so that your son doesn't worry. My youngest daughter was diagnosed 10 months ago and my oldest daughter has now watched both her mom and dad break down and cry in front of her. But she has really taken up the cause of CF and could (and will!) explain Katy's treatments and meds to anyone that will listen.

It will just integrate into who you all are, but it will take some time. Please keep us posted on how everything goes. Check out the Families section - you will find lots of support from moms who have been just where you are. Many of us still break down, but mostly we have figured out how to get on with the business of living! Hugs and strength to you!

 

[ktsmom]

Hi Kimberly -

Don't beat yourself up about not being pushier with the docs. There are many of us on here that had similar situations - the doctors wouldn't listen and wrote us off as hysterical moms. The good news is that your son will now be getting the treatment he needs.

I especially appreciated your comment about keeping your own composure so that your son doesn't worry. My youngest daughter was diagnosed 10 months ago and my oldest daughter has now watched both her mom and dad break down and cry in front of her. But she has really taken up the cause of CF and could (and will!) explain Katy's treatments and meds to anyone that will listen.

It will just integrate into who you all are, but it will take some time. Please keep us posted on how everything goes. Check out the Families section - you will find lots of support from moms who have been just where you are. Many of us still break down, but mostly we have figured out how to get on with the business of living! Hugs and strength to you!

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[JORDYSMOM]

Hey Kimberly,

I was a divorced mother of 3 when my 15 year old was diagnosed. I was driving home from work in a blinding snow storm 2 days before Christmas when I got the call. It felt like someone punched me in the gut. I pulled into a parking lot and just cried. I felt the same way about why no docs had ever tested him before.

He had asthma and we had been through several surgeries starting at 9 months to put in ear tubes and remove aednoids, etc. I was told he would most likely "outgrow" the asthma, but of course it got worse as he aged. I am greatful though, that we finally know and that he is now receiving the proper care. It really has made a huge difference in how he feels.

Hang in there!

Stacey

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[Alyssa]

Kimberly,

I have the same story as most have posted here already -- my daughter was misdiagnosed at age 5 and wasn't correctly diagnosed until age 14. So you are not alone it the "how could this go undiagnosed for so long club". See the first entry of my blog page (link below) for the full story.

You are on the right track now. I know it sounds crazy but getting the correct diagnosis and treatment usually results in your child's health problems getting a little better because you will now have a doctor prescribing the correct treatments. This may not be the case 100% of the time, but often times when a person isn't getting the standard CF care their symptoms are far worse. Prior to getting diagnosed correctly, my daughter had about 4 lung infections per year and the year of her diagnosis she had repeat lung infections for 9 solid months - now four years after diagnosis, she is on several "breathing treatments" (Pulmozyme, Hypertonic Saline, Flovent, The Vest) and her lung health has steadily improved, it has been about 18 months since her last lung infection.

I know it is all a lot to take in at one time, but hang in there -- get to a certified CF clinic and you will be heading in the right direction. Keep posting, everyone here has a lot of good experience and knowledge to share with you.

 

[hlyterra]

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's already had chest and sinus xrays and also a catscan. He doesn't even flinch at the blood draws anymore. I hope they do have something for him to give him some relief for the coughs. He's so tired during the day from the lack of sleep. I will keep you posted. I really can't stress enough how your comments really put my mind at ease. Thank you again.

Kimberly

 

[hlyterra]

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's already had chest and sinus xrays and also a catscan. He doesn't even flinch at the blood draws anymore. I hope they do have something for him to give him some relief for the coughs. He's so tired during the day from the lack of sleep. I will keep you posted. I really can't stress enough how your comments really put my mind at ease. Thank you again.

Kimberly

 

[hlyterra]

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's already had chest and sinus xrays and also a catscan. He doesn't even flinch at the blood draws anymore. I hope they do have something for him to give him some relief for the coughs. He's so tired during the day from the lack of sleep. I will keep you posted. I really can't stress enough how your comments really put my mind at ease. Thank you again.

Kimberly

 

[hlyterra]

Thank you all so much for your words, thoughts and best wishes. It's bitter-sweet to know that I'm not alone. I wouldn't wish this on anyone. Tomorrow we have our first appointment. I'm glad one of you stated that it would be several hours. I know they plan on doing more blood work. He's already had chest and sinus xrays and also a catscan. He doesn't even flinch at the blood draws anymore. I hope they do have something for him to give him some relief for the coughs. He's so tired during the day from the lack of sleep. I will keep you posted. I really can't stress enough how your comments really put my mind at ease. Thank you again.

Kimberly