RSV Study

[Guest guest]

Has anybody heard the results of the synargis/RSV study with CF? I have a

new baby who (98% sure) has CF and we are weighing with an HMO and CF doctor

whether to get him the shots or not - and if the HMO will pay for them. Any

info would be great - including personal stories of those who have used the

shots.

Thanks

Lori

mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

[Guest guest]

Lori -

My son , was born premature and with CF. He suffered a perforated bowel

at birth, spending 3 months in the intensive care. His lungs were also

premature. He was given his 1st RSV shot before leaving the hospital and

and received them every month there after that winter, the next year winter

months and the next. He is approaching three years of age this year, and is

not eligible for the shots. I am devistated. He has already had two colds

this past month, and suspected pnumonia. He also ran his 1st fever EVER

last month. I am a very strong believer in these shots. There were no side

effects, only a very healthy baby. He had a few brief minor colds each

winter, but no fevers, ear infections, or lung infections. We knew this

year would be a test, and so far, I am really nervous about the months to

come. We are taking all precaustions to keep him well - lots of hand

washing, avoiding busy public areas, etc.

If you can get the shots approved over the next few years, I strongly

suggest them, as well as flu shots - we had both. Good luck!

Melinda - son 2.5 yrs wcf and sister 25 wcf

RSV Study

Has anybody heard the results of the synargis/RSV study with CF? I have a

new baby who (98% sure) has CF and we are weighing with an HMO and CF

doctor

whether to get him the shots or not - and if the HMO will pay for them.

Any

info would be great - including personal stories of those who have used

the

shots.

Thanks

Lori

mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

[Guest guest]

Hi Melinda,

This is certainly interesting. My twins were born premature as well - they

were at 25.5 weeks gestation

when they were born. They spent between 6 and 7 months in the hospital

before coming home.

had perforated bowel as well. They both got RSV shots last year, and will be

getting them again this year.

I don't know if I would have fought for RSV shots for next year, if the

pediatrician didn't specifically recommend

it, but I will now.

Thanks,

Mommy to Mick and Alli, 19 mo twins wcf, born way too early.

[Guest guest]

Melinda,

Santosh has received Synergis shots for 3 years. He had RSV at 6 months of

age, and strangely enough that's how he was diagnosed with CF at 9

months -that's a long story. But our insurance company approved the shots

because he had had RSV - I know it's generally approved for children who are

premature and/or have had RSV.

Santosh was very healthy the past three years but I don't know if I

attribute that completely to the shot. He did not go to school, the grocery

store, church, or basically anywhere public all winter. I was too afraid

because of what happened at 6 months, plus he was (and still is) very thin

(31lbs at 4 years old) and every time he went on antibiotics he'd lose

3-5lbs then take a LONG time to gain it back.

Now that he's older and stronger, he's in school. He is starting his 3rd

cold in 6 weeks of school - it's one after another. His doctor is afraid

it's from a sinus infection, so we're getting a CT scan in 2 weeks to get

that checked out.

I do think the shots helped but it's very difficult - Santosh had to have 2

shots - one in each leg because his arms are too thin and the dose for his

weight was too big to fit in one shot.

I wish you luck - an ounce of prevention is worth a pound of cure.

Krishnan

Mom to Santosh, 4wcf and Leela, 2yowocf

RE: RSV Study

Lori -

My son , was born premature and with CF. He suffered a perforated bowel

at birth, spending 3 months in the intensive care. His lungs were also

premature. He was given his 1st RSV shot before leaving the hospital and

and received them every month there after that winter, the next year winter

months and the next. He is approaching three years of age this year, and is

not eligible for the shots. I am devistated. He has already had two colds

this past month, and suspected pnumonia. He also ran his 1st fever EVER

last month. I am a very strong believer in these shots. There were no side

effects, only a very healthy baby. He had a few brief minor colds each

winter, but no fevers, ear infections, or lung infections. We knew this

year would be a test, and so far, I am really nervous about the months to

come. We are taking all precaustions to keep him well - lots of hand

washing, avoiding busy public areas, etc.

If you can get the shots approved over the next few years, I strongly

suggest them, as well as flu shots - we had both. Good luck!

Melinda - son 2.5 yrs wcf and sister 25 wcf

[Guest guest]

-

Wow, you too had a rough start! And with two babies! My sister has CF, and

I knew had CF in utero, but the whole preemie/bowel thing took things a

step further that I could have never imagined. We are so thankful he is

alive. We were able to get the 3rd round of shots because he was still

under two when the rsv season started, and we asked if they would go ahead

and cover the few months after December when he turned two. I guess after

realizing they had already spent over half a million at birth, what was a

few more thousand to keep him out of the hospital. I hated putting him

through all the shots - he was up to two shots a visit for the dose, but in

the long run, I think it really protected him another year. Best of luck!

Melinda - son 2.5 yrs wcf and sister 25 wcf

RE: RSV Study

Hi Melinda,

This is certainly interesting. My twins were born premature as well - they

were at 25.5 weeks gestation

when they were born. They spent between 6 and 7 months in the hospital

before coming home.

had perforated bowel as well. They both got RSV shots last year, and will

be

getting them again this year.

I don't know if I would have fought for RSV shots for next year, if the

pediatrician didn't specifically recommend

it, but I will now.

Thanks,

Mommy to Mick and Alli, 19 mo twins wcf, born way too early.

[Guest guest]

Thanks Melinda,

Big hospital bills certainly are the great motivator when it comes to

getting

coverage from the insurance companies. I've become super organized, and

can pop in a mickey button at the speed of light, without flinching, but I

would never ever admit my competance to the insurance company, because

the more inept they think I am, the stronger a case I have for at home

nursing

care (which I can't live without!) and other necessities of life.

Take care,

C

Mommy to Mick and Alli, 19 mo twins wcf

RE: RSV Study

-

Wow, you too had a rough start! And with two babies! My sister has CF,

and

I knew had CF in utero, but the whole preemie/bowel thing took things

a

step further that I could have never imagined. We are so thankful he is

alive. We were able to get the 3rd round of shots because he was still

under two when the rsv season started, and we asked if they would go ahead

and cover the few months after December when he turned two. I guess after

realizing they had already spent over half a million at birth, what was a

few more thousand to keep him out of the hospital. I hated putting him

through all the shots - he was up to two shots a visit for the dose, but

in

the long run, I think it really protected him another year. Best of luck!

Melinda - son 2.5 yrs wcf and sister 25

[Guest guest]

Hello Lori,

I am so saddened to learn that your baby probably has CF as well. What have

been his symptoms so far ? Does he taste salty ?

You are in my thoughts..

Mom of Leo almost 3 wcf and Colin 5 months wo cf

RSV Study

Has anybody heard the results of the synargis/RSV study with CF? I have a

new baby who (98% sure) has CF and we are weighing with an HMO and CF

doctor

whether to get him the shots or not - and if the HMO will pay for them.

Any

info would be great - including personal stories of those who have used

the

shots.

Thanks

Lori

mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

[Non-text p ortions of this message have been removed]

[Guest guest]

Lori -

I am considering a second child, my first is also 3. Did you have any amnio

or CVS testing done while you were prengant w/the second? If so, was CF not

found?

Melinda

RSV Study

Has anybody heard the results of the synargis/RSV study with CF? I have

a

new baby who (98% sure) has CF and we are weighing with an HMO and CF

doctor

whether to get him the shots or not - and if the HMO will pay for them.

Any

info would be great - including personal stories of those who have used

the

shots.

Thanks

Lori

mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

[Non-text p ortions of this message have been removed]

[Guest guest]

Hi Lori -

I can't really add too much regarding the synargis shots...although

Walter participated in that study for 6 months before he turned 2. We

were told in the beginning of the study that the vaccine had been

thoroughly tested in preemies and was safe. If you can get your

insurance to pay for it, it would probably be worthwhile.

Congratulations also on the arrival of baby Vince. It must be

wonderful to have cuddly newborn in your arms again.

Hope everything is going well.

Mom to Walter (4 w/CF) and (2)

[Guest guest]

HI Lori,

What is the Synergis/RSV and what was the study about?

I haven't heard of it in NZ (unless we go by another name for it).

Regards,

Margaret Todd

RSV Study

> Has anybody heard the results of the synargis/RSV study with CF? I have a

> new baby who (98% sure) has CF and we are weighing with an HMO and CF

doctor

> whether to get him the shots or not - and if the HMO will pay for them.

Any

> info would be great - including personal stories of those who have used

the

> shots.

>

> Thanks

>

> Lori

> mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

>

>

>

[Guest guest]

Lori,

Congratulations on your baby Vince. Sorry to hear he may have Cf. Does he

have the symptoms or did he have a blood test?

RSV Study

> Has anybody heard the results of the synargis/RSV study with CF? I have a

> new baby who (98% sure) has CF and we are weighing with an HMO and CF

doctor

> whether to get him the shots or not - and if the HMO will pay for them.

Any

> info would be great - including personal stories of those who have used

the

> shots.

>

> Thanks

>

> Lori

> mom to Scout 3 wCF and Vince 4 weeks wCF (we think - sweat test in Nov.)

>

>

>

[Guest guest]

Hi, all; mentioned something else: that if your child has not yet

been diagnosed with cf, but had a premature or traumatic birth and is at

risk, many HMO's will use Synagis; they usually test for RSV antibodies first.

n Rojas

[Guest guest]

My son has (believe it or not) just been approved by our insurance for his

4th winter of Synergis. It is incredible, how healthy these potent little

shots keep him. He's 3.5 years old and weighs 37 pounds and has never been

in the hospital for anything other than clinic visits. In addition to the

synergis, he gets the flu shot (as do all of us in the family for his sake)

and we up the vitamins during the winter. I highly recommend, if you can get

your insurance to cover this incredibly expensive shot(s), to get it. He has

previously gotten 2 shots every 6 weeks from October through April; but this

year he will need 3 shots due to his weight. We consider it practically

magic and can't imagine a winter without it. Good luck.

[Guest guest]

Believe me, I was shocked. But we have an INCREDIBLE clinic -- Children's

D.C. -- and the physician there is super-agressive. And, as I said, he

hasn't had any hospitalizations (save his initial 6 weeks at birth with 3

surgeries for a meconium ileus/ileostomy and reanastamosis) since. I like to

think the insurance company is like Pavlov's dog -- looking at what works and

sticking with it. But I have also learned to play my insurance company like

MY fiddle. If they say no, I appeal (and eventually win) as with the vest,

and his recent dental surgery which I got them to cover even though we don't

have dental insurance. Our motto, as parents with children with CF is --

" When insurance companies say " NO, " they really mean " yes " -- you just have

to fight hard enough to get there! Who told you you wouldn't be able to get

it covered again? Appeal the ruling -- and hopefully they'll change their

mind.

[Guest guest]

Remind your clinic/insurance that synergis isn't even approved for CF kids,

period. I believe doctors were prescribing it due to the combination

CF/premie. Good luck.

[Guest guest]

Wow, how did you get this approved? I would love your advise on this. This

will be my son's first year without them, and in 4 weeks, has had two colds,

one of which he still has!

Melinda -mom to son 2.5 yrs wcf

Re: RSV Study[Melinda Pearson] to

My son has (believe it or not) just been approved by our insurance for his

4th winter of Synergis. It is incredible, how healthy these potent little

shots keep him. He's 3.5 years old and weighs 37 pounds and has never

been

in the hospital for anything other than clinic visits. In addition to the

synergis, he gets the flu shot (as do all of us in the family for his

sake)

and we up the vitamins during the winter. I highly recommend, if you can

get

your insurance to cover this incredibly expensive shot(s), to get it. He

has

previously gotten 2 shots every 6 weeks from October through April; but

this

year he will need 3 shots due to his weight. We consider it practically

magic and can't imagine a winter without it. Good luck.

[Guest guest]

Well, we had to work a little magic last year because my son was turning 2

right in the middle of the season, and apparently if they are over two - no

more RSV shots - accoring to their regulations?!? I have not even

considered for this year, but have been so fearful of the onset of flu/rsv

season. I will call my CF clinc here in Houston tomorrow and see what they

think for my son (he aslo had a perforated bowel, ileostomy/reinastomosis).

Thanks for responding!

Melinda

Re: RSV Study

Believe me, I was shocked. But we have an INCREDIBLE clinic -- Children's

D.C. -- and the physician there is super-agressive. And, as I said, he

hasn't had any hospitalizations (save his initial 6 weeks at birth with 3

surgeries for a meconium ileus/ileostomy and reanastamosis) since. I like

to

think the insurance company is like Pavlov's dog -- looking at what works

and

sticking with it. But I have also learned to play my insurance company

like

MY fiddle. If they say no, I appeal (and eventually win) as with the

vest,

and his recent dental surgery which I got them to cover even though we

don't

have dental insurance. Our motto, as parents with children with CF is --

" When insurance companies say " NO, " they really mean " yes " -- you just

have

to fight hard enough to get there! Who told you you wouldn't be able to

get

it covered again? Appeal the ruling -- and hopefully they'll change their

mind.

[Guest guest]

Yes, definately preemie, but another factor was that he gets albuterol in a

nebulizer treament daily, and that qualified him last year, since RSV is a

repiratory infection.

Melinda

Re: RSV Study

Remind your clinic/insurance that synergis isn't even approved for CF

kids,

period. I believe doctors were prescribing it due to the combination

CF/premie. Good luck.

[Guest guest]

What is synergis and RSV shots for? I'm from New Zealand. Perhaps we go by

another name?

Regards, Margaret Todd

Re: RSV Study

> My son has (believe it or not) just been approved by our insurance for his

> 4th winter of Synergis. It is incredible, how healthy these potent little

> shots keep him. He's 3.5 years old and weighs 37 pounds and has never

been

> in the hospital for anything other than clinic visits. In addition to the

> synergis, he gets the flu shot (as do all of us in the family for his

sake)

> and we up the vitamins during the winter. I highly recommend, if you can

get

> your insurance to cover this incredibly expensive shot(s), to get it. He

has

> previously gotten 2 shots every 6 weeks from October through April; but

this

> year he will need 3 shots due to his weight. We consider it practically

> magic and can't imagine a winter without it. Good luck.

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

My son had RSV shots through his third year because my pediatrician ordered

it. He even wanted them this year (Santosh is 4) but left it up to my CF

clinic, who didn't feel it was necessary. Maybe you could ask . . .

Krishnan

Mom to Santosh, 4wcf and Leela, 2wocf

RE: RSV Study

Well, we had to work a little magic last year because my son was turning 2

right in the middle of the season, and apparently if they are over two - no

more RSV shots - accoring to their regulations?!? I have not even

considered for this year, but have been so fearful of the onset of flu/rsv

season. I will call my CF clinc here in Houston tomorrow and see what they

think for my son (he aslo had a perforated bowel, ileostomy/reinastomosis).

Thanks for responding!

Melinda

[Guest guest]

Lori, why did they tell you at your CVS that it was 98% that the baby had CF

if you had an unknown mutation? How did they distinguish between that and

just a carrier?

[Guest guest]

Yes I think he tastes salty. I also started him on enzymes when he

was less than a week old - our CF Pulm. reccomended that. I noticed a

change in his poops immediately.

We had a CVS done at 11 weeks (during pregnancy) and it came back 98%

sure he has CF. It can't be 100% because I have an unknown mutation.

Anyway, for now he is doing great. He had gained a pound at his 2

week check up and I can tell at four weeks that he has gained quite a

bit more. Starting him off with the enzymes really made a difference.

Lori

mom to Scout 3 wCF and Vince 4 weeks wCF(98% sure)

> Hello Lori,

>

> I am so saddened to learn that your baby probably has CF as well.

What have

> been his symptoms so far ? Does he taste salty ?

>

> You are in my thoughts..

>

> Mom of Leo almost 3 wcf and Colin 5 months wo cf

[Guest guest]

I kind of answered this in a previous post, but the problem was that

I have an unknown mutation. We had also decided before we got

pregnant that we would hav ethe baby CF or no CF.

I just hope that in our case our kids have similar disease. So far

Scout really has done well. (After diagnosis.)

Lori

Mom to Scout 3 wCF and Vince 4 weeks wCF (98% sure)

> Lori -

>

> I am considering a second child, my first is also 3. Did you have

any amnio

> or CVS testing done while you were prengant w/the second? If so,

was CF not

> found?

>

> Melinda

[Guest guest]

I had a typo. in my first note - it is actually synagis. It is a shot

they give premies and others who are at high risk for hospitalization

if they get rsv. It isn't a vaccine - they have to get a shot every

month during rsv season. It is more like getting an antibody shot for

rsv.

They did the study at our clinic a couple of years ago. Some patients

got synagis and some got a placebo. They were supposed to track and

see if there was a difference between the two groups and rsv

infection/hospitalization, etc. Like most shots synagis isn't 100%

protection.

Lori

> HI Lori,

>

> What is the Synergis/RSV and what was the study about?

>

> I haven't heard of it in NZ (unless we go by another name for it).

>

> Regards,

> Margaret Todd

[Guest guest]

The miracle of modern science was able to tell that Vince got the

same chromosome 7 from me that Scout did. (They call checking

this " linkage " .) So, that would mean he also got the same CF gene -

unless the gene did something weird (which apparently can happen

sometimes, thus the 2% possibility of just being a carrier). By

something weird apparently sometimes during conception genes can hop

from one chromosome to another - so he could have recieved the same

choromosome 7 but the CF gene from my other chromosome 7.

Wild huh?

Lori

> Lori, why did they tell you at your CVS that it was 98% that the

baby had CF

> if you had an unknown mutation? How did they distinguish between

that and

> just a carrier?