RSV

[Guest guest]

Hi all!

RSV stands for Respiratory Syncytial Virus. Matt had it when he was

3 months old, hospitalized for a day and home on home oxygen for a

month. It is scary, especially for young babies, and especially

babies with other medical problems. Specifically any child with a

previous lung/breathing problem.

Basically we all get this virus and it is not a big deal. But

obviously those who are immunosupressed or small or sick are at a

greater risk. There are some great websites for information, just

Google " RSV " .

There is a vaccine, but it is really costly and insurance companies

have specific parameters your child has to meet to qualify for it.

Beth H.

[Guest guest]

For all who are new to the site,

RSV is what put our in the Cleveland Clinic for 5.5 weeks last

winter. He spent 3.5 weeks on a ventilator, (there was a LOT of talk about

traching him, and possibly sending him home on the vent) and 4.5 weeks in

the PICU. There is a nasal swab test that and be run for this, and 3 other

viruses. We were told that had been receiving the Synergis vaccine,

he would have been hit far less severely. He now has severe, and possibly

permanent scarring, of his lungs from this one infection.

Our Ped didn't think that qualified for the vaccines because, even

though he was born weighing only 3# 5oz and 15 " long, he was not premature.

Obviously she was wrong, and he's been receiving the vaccine since he left

the hospital, from his RSV infection, last Jan.

We now watch very carefully whenever he exhibits cold-like symptoms.

Some of the things we watch for are discoloration of his lips, or under his

nails, (a bluish tinge), dry, cracked lips, panting, increased gagging,

thickened residual, or him being extremely lethargic. , also, has a

tendency to roll back and forth repeatedly. (like he can't get comfortable)

I don't want to scare anyone, but obviously this was a very scary time for

all of us here, and I wouldn't want anyone to have to go through something

like this, if it can be avoided. One of the things in 's favor, at

the time he came down with RSV, was early detection.

Pat (g-ma to , RSS, 25 months, 20# 5.6oz, 29.1 " , Prevacid, Singulair,

GT)

[Guest guest]

Pat

My daughter's story is almost the same. She was born 13-15 at 36

weeks, and we were sent home being told we had a small but otherwise

healthy baby. The ped did not even mention sygagis and I did not know

about that or even RSV for that matter. Then at 2 month she Stops

breathing, we thank our stars we live 2 minute from the hospital and

thats why she is alive today. She was in the hospital 4 weeks, 10

days on the vent. Her feeeding aversion started after getting off the

vent. Oh how mad we were that the ped did not even tell us about

synagis, we didnt even have a chance to put a fight with the

insurance. For this winter the insurance first denied synagis since

she was not preemie enough (cut off is 35 weeks she is 36 weeks),

but after long letters (this time a very persuading one from th ped,

we never ended up switching since now the specialists are our main

doctors and we only go to her for the immunization shots only), and a

long letter from us saying without RSV she is most likely to run up

another $150,000 bill for the insurance again this winter.

This year she is getting syngagis and knock on wood she is doing so

well not even a sniff all winter so far, not even when her elder

sister got a cold and fever.

Now, since insurance goes only by prematurity to approve synagis, is

it possible through Magic or something to lobby so they take birth

size as well? I am sure RSS/SGA are just as vulnerable to RSV as the

preemies the same size, but since they are much smaller in number

they are overlooked by the insurance companies.

Sabina mother of Naomi