So much that I want to say...

[Daddy2Noah]

Thanks everyone <img src="i/expressions/face-icon-small-smile.gif" border="0">

Just wanted to say that Noah is double delta as well.

At the moment we are trying really hard (been trying since September) to get our insurace to cover RSV shots. They've refused several times and we are in our final appeal now. We have a meeting with them on the 2nd of January.
CHoP and his normal Pediatrician have both written letters, made calls, etc... tis insurance simply wont cover it (Keystone)

Hopefully we get somewhere on Tuesday.

I need to hit the lottery <img src="i/expressions/face-icon-small-smile.gif" border="0">
I want to spend bazillions of hours per day (yep, I'm appealing for extended hours in a day too!) with this child <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Daddy2Noah]

Thanks everyone <img src="i/expressions/face-icon-small-smile.gif" border="0">

Just wanted to say that Noah is double delta as well.

At the moment we are trying really hard (been trying since September) to get our insurace to cover RSV shots. They've refused several times and we are in our final appeal now. We have a meeting with them on the 2nd of January.
CHoP and his normal Pediatrician have both written letters, made calls, etc... tis insurance simply wont cover it (Keystone)

Hopefully we get somewhere on Tuesday.

I need to hit the lottery <img src="i/expressions/face-icon-small-smile.gif" border="0">
I want to spend bazillions of hours per day (yep, I'm appealing for extended hours in a day too!) with this child <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Our son is Double Delta f508 also. Diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. I've posted this a zillion times before, but we also had difficulties getting his rsv shots covered. Until a relative, who is also an attorney wrote a letter to our insurance company and faxed it too them. He was approved that afternoon. L

 

[Ratatosk]

Our son is Double Delta f508 also. Diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. I've posted this a zillion times before, but we also had difficulties getting his rsv shots covered. Until a relative, who is also an attorney wrote a letter to our insurance company and faxed it too them. He was approved that afternoon. L

 

[Ratatosk]

Our son is Double Delta f508 also. Diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. I've posted this a zillion times before, but we also had difficulties getting his rsv shots covered. Until a relative, who is also an attorney wrote a letter to our insurance company and faxed it too them. He was approved that afternoon. L

 

[Daddy2Noah]

It's crazy that they deny our kids these shots.

Noah not only has CF but was born 5 weeks premature.
His Pediatrician said she's seen many kids with far less need for these shots, get approved very quickly. For Noah, they've been denying him for 5 months <img src="i/expressions/face-icon-small-sad.gif" border="0">

Do they get the shots after the first year too? Or is it just for the first fall/winter?

I guess getting approved for next year is better than nothing, if he can even get the shots next year (I am not sure if it's throughout their childhood or not)

 

[Daddy2Noah]

It's crazy that they deny our kids these shots.

Noah not only has CF but was born 5 weeks premature.
His Pediatrician said she's seen many kids with far less need for these shots, get approved very quickly. For Noah, they've been denying him for 5 months <img src="i/expressions/face-icon-small-sad.gif" border="0">

Do they get the shots after the first year too? Or is it just for the first fall/winter?

I guess getting approved for next year is better than nothing, if he can even get the shots next year (I am not sure if it's throughout their childhood or not)

 

[Daddy2Noah]

It's crazy that they deny our kids these shots.

Noah not only has CF but was born 5 weeks premature.
His Pediatrician said she's seen many kids with far less need for these shots, get approved very quickly. For Noah, they've been denying him for 5 months <img src="i/expressions/face-icon-small-sad.gif" border="0">

Do they get the shots after the first year too? Or is it just for the first fall/winter?

I guess getting approved for next year is better than nothing, if he can even get the shots next year (I am not sure if it's throughout their childhood or not)

 

[Ratatosk]

Our doctor recommended the shots during RSV season -- October-March. We didn't get approved until November -- after we had a scare the end of September when he got a sinus infection, bit of a cough and was tested to see if he had RSV. He didn't. They wanted to make sure Max was covered because he goes to daycare/preschool. Only had them the first year.

I believe it's important to get the shots the first year because teeny tiny babies have teeny tiny airways and RSV involves LOTS of mucus. A friend of mine's healthy grandson got RSV when he was 3 months old and ended up in the hospital and still has breathing problems (asthma) when the weather gets colder.

A coworker's neighbor's child was automatically eligible for the synagis shots for RSV because she was a preemie. When I kept calling BCBS, I was told preemies and babies with heart conditions. CF wasn't covered by THEIR criteria locally. The shots cost about $3600 a pop. Our attorney pointed out that it was a lot cheaper than if our son would get RSV and need to be hospitalized for 2 weeks plus, lung damage.. Good luck! L

 

[Ratatosk]

Our doctor recommended the shots during RSV season -- October-March. We didn't get approved until November -- after we had a scare the end of September when he got a sinus infection, bit of a cough and was tested to see if he had RSV. He didn't. They wanted to make sure Max was covered because he goes to daycare/preschool. Only had them the first year.

I believe it's important to get the shots the first year because teeny tiny babies have teeny tiny airways and RSV involves LOTS of mucus. A friend of mine's healthy grandson got RSV when he was 3 months old and ended up in the hospital and still has breathing problems (asthma) when the weather gets colder.

A coworker's neighbor's child was automatically eligible for the synagis shots for RSV because she was a preemie. When I kept calling BCBS, I was told preemies and babies with heart conditions. CF wasn't covered by THEIR criteria locally. The shots cost about $3600 a pop. Our attorney pointed out that it was a lot cheaper than if our son would get RSV and need to be hospitalized for 2 weeks plus, lung damage.. Good luck! L

 

[Ratatosk]

Our doctor recommended the shots during RSV season -- October-March. We didn't get approved until November -- after we had a scare the end of September when he got a sinus infection, bit of a cough and was tested to see if he had RSV. He didn't. They wanted to make sure Max was covered because he goes to daycare/preschool. Only had them the first year.

I believe it's important to get the shots the first year because teeny tiny babies have teeny tiny airways and RSV involves LOTS of mucus. A friend of mine's healthy grandson got RSV when he was 3 months old and ended up in the hospital and still has breathing problems (asthma) when the weather gets colder.

A coworker's neighbor's child was automatically eligible for the synagis shots for RSV because she was a preemie. When I kept calling BCBS, I was told preemies and babies with heart conditions. CF wasn't covered by THEIR criteria locally. The shots cost about $3600 a pop. Our attorney pointed out that it was a lot cheaper than if our son would get RSV and need to be hospitalized for 2 weeks plus, lung damage.. Good luck! L

 

[amber682]

I believe RSV shots are usually given to children under 2. But my son turns 2 at the end of Jan., so he's getting them this year too.

Last year it was a breeze to get approved. In April of last year he caught RSV and spent 5 weeks in the hospital, so insurance must have been happy to get him the shots when cold/flu season rolled around again so they wouldn't have to fork over another $100,000+ if he caught it again and wound up hospitalized.

This year we moved to another state, and were initially denied Synagis because they said he wasn't preemie or suffering from a lung disease. WTF!! Guess they don't know CF is a lung disease! When we finally got approved and got the first shot, the pedi said it took no less than four hours of phone calls back and forth arguing with the insurance until they finally agreed to cover it.

Anyway, just my $0.02

Welcome to the site Jay! You sound like a wonderful father!<img src="i/expressions/face-icon-small-smile.gif" border="0">

BTW, I'll join you on the appeal for more hours in a day!

 

[amber682]

I believe RSV shots are usually given to children under 2. But my son turns 2 at the end of Jan., so he's getting them this year too.

Last year it was a breeze to get approved. In April of last year he caught RSV and spent 5 weeks in the hospital, so insurance must have been happy to get him the shots when cold/flu season rolled around again so they wouldn't have to fork over another $100,000+ if he caught it again and wound up hospitalized.

This year we moved to another state, and were initially denied Synagis because they said he wasn't preemie or suffering from a lung disease. WTF!! Guess they don't know CF is a lung disease! When we finally got approved and got the first shot, the pedi said it took no less than four hours of phone calls back and forth arguing with the insurance until they finally agreed to cover it.

Anyway, just my $0.02

Welcome to the site Jay! You sound like a wonderful father!<img src="i/expressions/face-icon-small-smile.gif" border="0">

BTW, I'll join you on the appeal for more hours in a day!

 

[amber682]

I believe RSV shots are usually given to children under 2. But my son turns 2 at the end of Jan., so he's getting them this year too.

Last year it was a breeze to get approved. In April of last year he caught RSV and spent 5 weeks in the hospital, so insurance must have been happy to get him the shots when cold/flu season rolled around again so they wouldn't have to fork over another $100,000+ if he caught it again and wound up hospitalized.

This year we moved to another state, and were initially denied Synagis because they said he wasn't preemie or suffering from a lung disease. WTF!! Guess they don't know CF is a lung disease! When we finally got approved and got the first shot, the pedi said it took no less than four hours of phone calls back and forth arguing with the insurance until they finally agreed to cover it.

Anyway, just my $0.02

Welcome to the site Jay! You sound like a wonderful father!<img src="i/expressions/face-icon-small-smile.gif" border="0">

BTW, I'll join you on the appeal for more hours in a day!

 

[Daddy2Noah]

Hi everyone, thanks for the advice and the warm welcome!

Noah was approved for the Synagis this morning!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
We had another appeal the other day and this time I hit them the cold hard facts and pushed the emotion aside and they approved him this morning <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all so much!

I will be back soon with more of Noah's story and other things <img src="i/expressions/face-icon-small-smile.gif" border="0">
the holidays kicked my butt! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I couldn;t egt online very much at all with everywhere we were visting, etc... now I am at back to normal and can't wait to dig in here <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Daddy2Noah]

Hi everyone, thanks for the advice and the warm welcome!

Noah was approved for the Synagis this morning!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
We had another appeal the other day and this time I hit them the cold hard facts and pushed the emotion aside and they approved him this morning <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all so much!

I will be back soon with more of Noah's story and other things <img src="i/expressions/face-icon-small-smile.gif" border="0">
the holidays kicked my butt! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I couldn;t egt online very much at all with everywhere we were visting, etc... now I am at back to normal and can't wait to dig in here <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Daddy2Noah]

Hi everyone, thanks for the advice and the warm welcome!

Noah was approved for the Synagis this morning!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
We had another appeal the other day and this time I hit them the cold hard facts and pushed the emotion aside and they approved him this morning <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all so much!

I will be back soon with more of Noah's story and other things <img src="i/expressions/face-icon-small-smile.gif" border="0">
the holidays kicked my butt! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I couldn;t egt online very much at all with everywhere we were visting, etc... now I am at back to normal and can't wait to dig in here <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

Hurray and congrats! DH and I took turns taking Max to the clinic to get his synagis shots. Don't know if you have to wait around anymore for them to mix up the serum or if they give the shots right away. What I liked was that they'd weigh him every time, so I could find out how much he was growing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Worse part was then they'd mix up the serum and we'd have to wait 20 minutes for it to settle, be ready. Pretty small inconvience considering the alternative, right!

 

[Ratatosk]

Hurray and congrats! DH and I took turns taking Max to the clinic to get his synagis shots. Don't know if you have to wait around anymore for them to mix up the serum or if they give the shots right away. What I liked was that they'd weigh him every time, so I could find out how much he was growing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Worse part was then they'd mix up the serum and we'd have to wait 20 minutes for it to settle, be ready. Pretty small inconvience considering the alternative, right!

 

[Ratatosk]

Hurray and congrats! DH and I took turns taking Max to the clinic to get his synagis shots. Don't know if you have to wait around anymore for them to mix up the serum or if they give the shots right away. What I liked was that they'd weigh him every time, so I could find out how much he was growing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Worse part was then they'd mix up the serum and we'd have to wait 20 minutes for it to settle, be ready. Pretty small inconvience considering the alternative, right!