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Night Elf

What is RSV?

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My nephew is a preemie baby. He was born over a month early and was born on May. 1st. He's been sick off and on since then. Now he's in the hospital with RSV ,but I don't know what that is. He's getting the max allowable o2 and if his demand increases, they're putting him in the ICU. What does all that mean? My BIL and SIL are busy at the hospital and not really checking Facebook. They're just posting short updates.

 

ETA: he wasn't born in November. He was born on May 1st. My mistake. I don't know where November came from!

Edited by Night Elf

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It is a respiratory virus that, in many adults and older kids, may just be an ordinary cold.  It can be very serious for a premie.  (One of my premies was hospitalized with RSV at 12 months, while his twin brother just had a cold.)

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It's a respiratory virus that is particularly threatening to premies. My son wasn't a premie- he was only three weeks early, but he caught it when he was only a couple of months old. It was horrible. He didn't have to be hospitalized, but I had to give him breathing treatments at home. It can get very bad very fast. The secretions from the virus can make them have a lot of difficulty getting enough oxygen and then feeding can become problematic.

 

At least your nephew is in the best place to treat it at his age. Hopefully he recovers quickly and completely.

 

ETA- by "treat" I mean support. Since it's viral there isn't much they can do on that end, but they can provide supportive measures to help him fight the infection and recover.

Edited by texasmom33
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Ok, thanks. Poor little guy. And on top of that both SIL and BIL have been sick. SIL was hospitalized a couple of weeks ago for 2 days. BIL has been home the past few days, waiting to get better so he could join SIL and dn at the hospital. Apparently respiratory illness is running rampant in their area. I just found out my MIL was hospitalized for 2 days with it but came home last night. No one called us to let us know!

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A nasty respiratory virus that my daughter who was 8 lbs 12 oz had at 5 weeks. It was scary for her; I cannot imagine with a preemie. My daughter was hospitalized for 5 days and had breathing treatments for a month afterwards. The hospital is the best place for him. Praying for the sweet guy and his parents. 

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The sickest baby I have ever had had RSV, and he wasn't a premie. It just hits some kids really hard and completely overwhelms their lungs.

 

Almost everyone gets it at some point, but to most of us it is just a cold. People don't realize they are spreading germs that can put a baby in the hospital or even kill them.

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It's rough. I hope they all feel better. I got it or something similar after my son, while newly pregnant with my youngest. It was truly just a brutal couple of months. It all worked out, but it's exhausting and scary.

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The sickest baby I have ever had had RSV, and he wasn't a premie. It just hits some kids really hard and completely overwhelms their lungs.

 

Almost everyone gets it at some point, but to most of us it is just a cold. People don't realize they are spreading germs that can put a baby in the hospital or even kill them.

 

And this is why I don't agree with the "it's just a snotty nose" excuse for bringing sick kids to camp/school/daycare/children's museum/etc. 

 

For YOUR kid it's just a snotty nose. It may kill another kid. 

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My son had severe bronchitis  at the ripe old age of 6 weeks. He was so very sick, he probably should have been hospitalized. However, the risk for him contracting RSV meant that my dr was hesitant to admit him. Dr. said "If he goes to the hospital, he WILL end up with RSV." IT was January. So the dr fixed us up with breathing treatments, taught me how to monitor his signs, and even called me late at night several nights in a row to help us stay on top of his breathing. We skated by keeping him out of the hospital.

 

RSV is  very serious for infants and mine was a full term, 7.5 lb baby. I can't imagine a tiny preemie!

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Yeah, RSV is very serious for preemies. I expected my little guy will get the shot for it before he comes home, as I think preemies generally do.

 

Putting him in the ICU means they can support his lungs better as he recovers, with oxygen and ventilators if need be. Plus, he will have very careful monitoring and care with a low ratio of nurses to babies.

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Yeah, RSV is very serious for preemies. I expected my little guy will get the shot for it before he comes home, as I think preemies generally do.

 

Putting him in the ICU means they can support his lungs better as he recovers, with oxygen and ventilators if need be. Plus, he will have very careful monitoring and care with a low ratio of nurses to babies.

Is there a vaccine then?

 

If so why is it not more widely available?

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It's not exactly a vaccine. It's an injection of antibodies that's given once a month during flu/cold season. It's also crazy expensive. $2500 per shot (at least it was 8 years ago)

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Is there a vaccine then?

 

If so why is it not more widely available?

This I do not know. I know there is some sort of shot, but I've never had a preemie before so I don't know the details.

 

Okay, I googled "rsv vaccine." The CDC's site says there isn't actually a vaccine yet, but there's a medicine that may help, and it's given monthly to babies and children at higher risk for complications. https://www.cdc.gov/features/rsv/

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Hopefully a vaccine can be developed soon!

 

I wonder if it is one of those viruses that mutates quickly, making vaccine development harder?

Edited by maize

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The shot is called Synagis.   https://www.synagis.com

 

FWIW, get pre-approved by insurance for the shot at least a week before planning to leave NICU.  It was quite a song and dance routine to get it covered. The price has gone down to about $3500, last I checked.

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At least back 14 years ago, the Synagis shot was monthly.  It is a particular particle of immunoglobulin (IgG), if I recall correctly.  Insurance covered through the end of the RSV season in which my boys were born (born in Feb, so they got the monthly shot through May) but coverage was refused for the second winter, when they did in fact get RSV.

 

Turned out not to be the last supplemental IgG my ds would get, but that's another story... the messed-up premie immune system.

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My son was hospitalized for 10 days with RSV as a newborn. He was considered full term, but was only 5 1/2 lbs. it was a scary, difficult time. I am praying for your nephew and his parents and family!

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Respiratory Syncytial Virus. There is a vaccine which some preemies will get through the season when RSV is prevalent (Nov-April??) but they have to be approved by their insurance for the vaccine which is very expensive (something like $1000 a shot administered monthly). Insurances are very restrictive about who gets the vaccine and who doesn't. My dd was born at 36 weeks but had issues with periodic breathing and apnea (was on an apnea monitor for 4 months). Our insurance said if she had been born 2-3 days earlier, she would have qualified for the vaccine under their rules. I have worked with preemies on ventilators and/or with tracheostomies who have been denied the vaccine in their second year of life.

 

My dd had RSV twice, once at 5 months old and again at 18 months. She required hospitalization the second time due to pneumonia but we were able to deal with it at home with a nebulizer when she was younger. She required a nebulizer with every cold or illness after that. She got it that first time...snotty kid at my ds' birthday party and the second time from a snotty kid at ds' wrestling practice.

 

People who bring sick children out of the house have annoyed me ever since.

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I'm so sorry your nephew is ill, OP. RSV is terrible, and for a preemie... oh my. :(

 

His parents must be exhausted, too.

 

Your family will be in my thoughts.

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My foster twins had RSV last year.  One spent almost 9 weeks in the hospital and the other spent 6 weeks.  After discharge, both boys did very well.   Its a wicked virus with no vaccine.  They can give synergist monthly, but not every preemie qualifies and it is very expensive. 

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RSV veteran here...

 

Middle dd was a preemie (34 weeks) and ended up with RSV at 8 weeks (her lungs were still not fully mature yet).  It was rough road  and a LONGGGGG story (involved 3 hospitals)... she was critical for a few weeks... this was just a few weeks after they released the lab test for RSV and we happened to live in the Chicago area where the ONLY lab was at the time).

 

We brought dd home from the hospital (as a newborn) and all was OK until her older sister had a case of the sniffles (no other symptom).  Right after DD was admitted to the hospital I came down with it too-- the hospital put DD in an isolation room that had an extra adult bed in it and our HMO even sent a Dr to make a 'house call' for me-- I was NOT going to leave my baby!

 

At 6 months DD was diagnosed with RAD (reactive airway disease)-- it is a lot like Asthma except it is triggered by viruses.  She had breathing treatments every 4 hours around the clock until she was 3 then I would get a few nights off between episodes.  Daily breathing treatments lasted until she was 6... we kept stocked up on meds and equipment until she was a teen.  She is now 24 and still uses an inhaler 1-2 times each month.

 

 

 

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There's a really bad strain going around right now. My cousin's healthy, full term 8 month old was hospitalized for several days over Christmas. The grandmother got it too and nearly needed hospitalization. I believe both of theirs turned into pneumonia.

 

I hope their baby is better soon.

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Oh good grief! I had a typo in my OP! He wasn't born November 1st, he was born May 1st. So he's 9 months old. I'm so sorry! But he has been a sickly child all this time. He's been hospitalized before but no one said anything about RSV. This seems to be a new development. Their latest update today said he also had something called Rhino virus. I've never heard of that.

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Is there a vaccine then?

 

If so why is it not more widely available?

 

There is no vaccine.  They inject the babies with the actual antibodies.  They last about a month and then need to be replaced with more injections.

 

The injections are very expensive, and painful.  I think when my son had them 15 years ago they were about $1,000 a shot, and they get one shot for every 12 lbs or something like that, so a 2 year old (my son was approved for the shots through his third birthday) might be getting $3,000 worth of shots each month every winter.  Of course, the price has almost certainly gone up since then.  Insurance tends to try and avoid providing them for kids who are not high risk.

 

The shots aren't perfect.  Babies still get RSV but not as often or as badly.  If Night Elf's nephew was very preemie, he may well have had the shots, and they may be the reason he's not in ICU right now.

 

I hope that Night Elf's nephew turns a corner soon!  It's a scary disease for kids with lung issues.

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Oh good grief! I had a typo in my OP! He wasn't born November 1st, he was born May 1st. So he's 9 months old. I'm so sorry! But he has been a sickly child all this time. He's been hospitalized before but no one said anything about RSV. This seems to be a new development. Their latest update today said he also had something called Rhino virus. I've never heard of that.

 

Yeah, that's bad because he's getting a double wallop. Poor guy. Rhino viruses are the most common cold virus in people and aren't necessarily any big deal, but when it's a young child coupled with RSV it's a compounding issue, I'm glad he's receiving treatment in the hospital. That's lot for a tiny body to fight against. 

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Poor little guy! At least he's not brand new, but yes, RSV is apparently very nasty.

 

When DS was born, his ped recommended the Synergis. Shocked at the price my insurance company quoted, I checked with my aunt who's a pharmacist, and she told me to get it for him if there was any way we could afford it. (We did. The obnoxious insurance company, which also required us to use them as a pharmacy, actually tried to raise the price on us after it had been administered. Ugh.) We spent a lot of the first winter at home anyway, and he didn't catch anything.

 

I'm glad your nephew's doctors seem to be really on top of things, and they'll send him to PICU if he needs it.

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