RSV

[Foogirl]

We got a letter from the hospital last week, telling us that because she was premature Abby is at risk from RSV (Respiritory Syncital Virus) and there is a series of injections she can have to help protect her from it.

I asked the HV about it and she had no idea about the injections although she knew what RSV was. Nothing was mentioned to us at the hospital about it, and given they told us about practically everything she would need until she was 2, that surprises me.

I'm not particularly keen as it is one injection a month between november and april. Poor kid will be traumatised after that!!!! Quite apart from the time element to go to all the appointments, it seems like a lot to put her through. Her lungs were very strong and she was barely ventilated or on O2 in hospital so I'm just not sure she needs it.

Has anyone else got this leaflet? What are your thoughts.

 

[bumpsmum]

so far not heard or received anything in, maybe a micro-premmie concern? like you say Abby didnt need alot of breathing asistance and her lungs good from get go, maybe its a generic leaflet they just send out from their database - maybe call SCBU or your Paediatrician to see if its really necessary. It is however, reassuring to know that they know issues like this can crop up but Nov is a little late in the year for the first injections. Hopefully its not needed hun x

 

[Dona]

Hey there, not had anything through the post about that. Let us know how you get on. Archie was very early and its never been mentioned to us.

xxx

 

[nkbapbt]

Lakai had RSV shots last RSV season, and we hope will get them again. Its very dangerous for babies who are even full term let alone preemies.

Unless you are against vaccines, I strongly suggest getting them. They are into the muscle sadly and do really hurt...but worth it since its nothing something you want to mess around with AT ALL. You can use numbing cream to help.

They are very expensive vaccines and fragile, I think our nurse told us something like $1500 per batch/vile ouch! So it's hard to qualify for them.

I never thought I would say this but consider yourself lucky if you get them, it can be a fatal illness.

Here you either do or don't, and those that don't just never leave their houses all season and those that do basically avoid large crowded areas...and still never leave their houses!!

One thing, even if you do get them...you baby can still get RSV but it just won't be as awful or devastating on their wee bodies/lungs.

 

[premmiemum123]

I haven't received anything, am due to see my LO's consultant in a few weeks so will ask him. I am worried about RSV especially as Emily has so many breathing problems even though she self ventilated in air. Plus she has had two colds in the space of four weeks and now sounds like a old man with hoarse breathing.

RSV is not nice even for full term babies as mentioned above. If I can avoid it I will. I would enquire further if I was you Foogirl.

 

[bumpsmum]

Foogirl,

Took Matthew to see Dr today and asked her about RSV jags, she checked his file etc and said its unlikely he will need them as his respiratory distress settled very quickly after birth (CPAP first 24hrs only) she said If he had sustained more lung/chest/breathing problems then Paediatrician would have wrote to he, which he has not. She did however stress the importance of Matthew getting the swine flu one when its avaialble. Hope this helps xx

 

[Gabrielle]

I have a preemie born at 33 weeks gestation. He is now 3 months old. They told me that he'd have to have the injection as well. It's called synagis..and it's about 2,000 dollars US for ONE shot. Thank god for insurance. But it's just one injection once a month. It is VERY important for them to get it.

RSV isn't terrible ...but in preemies nad young children it can lead to other medical problems and thats what makes it so much worse for these little guys.

Because preemies and newborns immune systems are so active to responding to any infection, they will go crazy when RSV enters there system and then it lets many other organisms in. It shuts downs their immue system.

If you havent heard about it.....please ask.

I'm going tell you from experience...my preemies has RSV...and he's had pneumonia 2 times now, broncitis, and lots upper respirtory infections. My poor baby has been in and out of the hopsital, constantly on nebulizers, injections in the legs, and tons of antibotics.

Good luck and make sure you get this vaccine! Don't risk your babies health. This is a very common virus, and in most adults and healthy children it's quite like a common cold/virus and works it's way out. BUt is HIGHLY contagious and could potentially hurt our little ones.

 

[Gabrielle]

Foogirl,

Took Matthew to see Dr today and asked her about RSV jags, she checked his file etc and said its unlikely he will need them as his respiratory distress settled very quickly after birth (CPAP first 24hrs only) she said If he had sustained more lung/chest/breathing problems then Paediatrician would have wrote to he, which he has not. She did however stress the importance of Matthew getting the swine flu one when its avaialble. Hope this helps xx

Not going against your doctor at all..but this is odd. Your baby was alot eariler then mine and my son is still recieving the vaccine. When he was born he was on cpap for two days and then just oxygen for a few days and then home. He didn't have much respirtory distress at all......then two weeks later he was sick and then things have been bad.

So i dont really agree with this doctor. Beacuse it doesnt matter their past history, IF they catch RSV..it COULD lead to potential problems.....b/c they we're early. Just because the lungs were strong in the beginning(which is AWESOME).....we dont know how well their lungs can handle illnesses.....

I'd get a second opinion personally. But that's just my advice. Good luck either way and I hope your baby continues to thrive well!

 

[Gabrielle]

Also I wanted to add, I know someone metioned about having to go to the clinic. But I know that a home nurse can come to your house to do the injection, or you can do them yourself. We chose to do them ourselves..b/c this is our 3rd preemie, and I'm a nurse .

 

[bumpsmum]

Thanks Gabrielle, Matthew was born 33+4 he had IUGR so small for his gestation. Hmm im starting to woder if their is a US/UK difference in healthcare and US more on the ball...... cost of NHS providing the vaccine perhaps, think ill be looking into this a bit more as Matthew has had 2 viral infections and a bad cold already he seems to take anything going. Thanks x

 

[Gabrielle]

Yea I've noticed that too. Seems alot more laid back in the UK...but only from what I've read.

I can imagine being told that you don't need it and then to hear stories like mine, or reading even worse things. It would scare me and have me getting upset with the doctors.

Hope you get some answers and get the injection...no fun to watch our little ones..it's hard enough just seeing them with a cold. hugs and your WELCOME!

 

[embojet]

Molly was on home oxygen until she was 3.5 months and we were warned about the dangers of RSV but never knew anything about jabs.

 

[Gabrielle]

Hmmm...I wonder if the US is just big on giving the injections. Werid.

 

[Foogirl]

Hmmm...I wonder if the US is just big on giving the injections. Werid.

At a couple of thousand dollars per shot, I'll bet they are!! I'm sure there is a nice healthy mark up on them.

It does surprise me there are some here who haven't been advised to get these, if the risk of getting RSV is so high. Perhaps the risk is higher in the US than here? Certainly the leaflet only says I would need them for one year as beyond that the virus isn't so threatening.

Abby and I don't tend to mix with a lot of other people, and anyone with a cold is already told to stay away. The only issue I have with calling the pead doctors for advice is that they will obviously advise I come in and get it as is was them who sent the leaflet. For sure they wont come out and do them and I certainly wouldn't do them myself.

Maybe I'll contact my GP and see what they say.

 

[nkbapbt]

The only problem with RSV...in adults, its usually most dangerous before you even know you are sick. So even if people don't seem sick they could still have it.

Babies don't usually get very ill (or pass away...sorry to be scary..=| )from RSV exactly it's the complications from it, or secondary infections.

I think its more common to get the injections here in Canada and the States. I know so many preemie moms who basically beg for them in the States or have serious troubles with insurance coverage getting them. Its sad, I always feel so heart broken for them because they need them and cant afford them.

 

[Samantha]

hi,
Charlotte had them in her first year home from hospital - some 2 years ago now. She was a 24 weeker and we were explained at the time by Frimley Park in Surrey, that only the real early babies - or high risk babies - receive the injections as they are very expensive. Charlotte had them and her first Winter was great - no infection.

She didnt have them in her second winter - last year. For certain, I wouldnt think twice about your little one having them. An injection once per month is a walk in the park to what could happen. if they are offering these to you - take them.

 

[dippy dee]

You are so lucky to be offered the jabs, when jack was little we had to fight tooth and nail to be able to get jack his because of the £500 per shot our gp refused so we found a gp surgery in the area with another preemie on the books and they shared each vile of the medication so none went to waste.
Jack never contracted rsv ( bronchilitis it is well know as ) and i think it was thanks to the jabs he had.

 

[Marleysgirl]

Andrew (a 29wk preemie) had his first RSV jab today, whilst still in NICU. He'll be invited back to the hospital's outpatients clinic for the remainder of the monthly jabs.

Nurses were quite surprised that I already knew about RSV when they started talking about it - thanks to this thread & the Bliss booklet!

 

[Foogirl]

Nurses were quite surprised that I already knew about RSV when they started talking about it - thanks to this thread & the Bliss booklet!

That's really good. I've thought a few times in this thread "Oh I wish I could be more help" as you've had a really hard time. I'm glad I was finally able to do something positive for you!!