Please tell me about the RSV vaccine.

[bandgeek]

DD is not vaccinated at all and I really don't intend to do any. She had a pretty severe brain injury just prior to birth and I really think vaccines could easily cause more neurological damage. I'd rather treat any illnesses she might pick up than risk more brain damage.

Anyway, a friend of mine and also our home nurse have been bugging me about the RSV vaccine. Now last winter, both her pedi and the neonatologist said she wasn't even eligible for the vax so I don't know what the deal is. My friend's baby has the same type of brain injury with the same chronic symptoms and she is eligible (and mom will get it no matter what so I won't even bother on this one). I haven't checked this year to see if she is eligible. If she isn't, great. If she is, I need to make a decision (although I already feel it's not right) and if I choose not to, I need info to get people to stuff it.

I understand that RSV is typically for preemies and babies with underdeveloped lungs. DD's situation is that she was full-term, lungs mature, but she is prone to pneumonia because she aspirates her secretions. She has only had one pneumonia at 5 months and it was determined NOT to be aspiration pneumonia. She's been sick a handful of times, but never needed cpap or intubated or anything. She requires oxygen but we haven't completely figured out why. We think that her irregular breathing has something to do with her low sats though (because often the oxygen does not help a whole lot), not that she has an actual lung problem (x-rays show her lungs to be in good shape and fairly clear given the circumstances).

Advice? Info? Thanks!

[Ophelia]

I read your blog, what a sweetie you have, and such a fighter.

I'd be thinking the same as you, that I would rather not risk a brain injury further. Any vaccine has the potential to cause brain injury. Remember that no vaccines are tested on unhealthy children, they cull all the kids until they only have the healthiest.

You'd either be vaccinating her and then hoping it won't cause a problem, or not vaccinate and she may not even get RSV anyways. I don't know much about the RSV shot. I think there's just not as much info on it because it's not in widespread use and on the schedule like the others.

I looked on VAERS and could not find an RSV shot.

[angie7]

It's not really a vaccine but more of just antibodies. Not sure if there are any potentially harmful materials in it or not. Have you researched the shot? I would be concerned given her breathing problems but also the brain injury too. On this one, I would go with your instinct. What does that inner voice tell you to do?

[2boyzmama]

http://www.rxlist.com/cgi/generic/palivizumab_ad.htm
http://www.synagis.com/

nak, i'll be back later to tell our story.

[abomgardner417]

I'm a bit anti-Synagis but here's our story anyway. My twins were preemies, but they were not in daycare, do not have older siblings that could bring the crud home with them from school, and were huge chunky babies when we got bullied into the Synagis shots at 7 mo old.

The program consists of about 6 mo worth of shots - two shots per month, one in each leg. They can either send a nurse to your home or you can go to the ped's office to get them. It is not a vaccine, it is RSV antibodies. I was told by the nurse that it had been on the market for 9 years (so about 11 years now) and that it was perfectly safe, but she could provide me with no other research and I wasn't able to find much on it at the time. The nurse will usually measure and weigh the baby and then administer the shots. She told me it does burn going in. If insurance doesn't cover the shots it will run about $1,300 per shot.

A lot of people who's kids had RSV will say get the shots. I know RSV can get pretty bad. But if I had it to do over again I would have said No Way. I don't think my kids were particularly at risk and I really feel the nurse used a lot of scare tactics to get me to agree. It caused a lot of stress for us because every time the nurse came I was screaming NO in my head but I didn't feel strong enough or like I knew enough to tell her I wanted to stop.

Personally, if your lo has already been through one winter w/o a problem I wouldn't consider getting it. If you do decide to, make sure they will come to the house so that you don't have to expose dd to the germy ped's office.
Good luck w/ your decision and go w/ your gut.

[2boyzmama]

Originally Posted by abomgardner417

I'm a bit anti-Synagis but here's our story anyway. My twins were preemies, but they were not in daycare, do not have older siblings that could bring the crud home with them from school, and were huge chunky babies when we got bullied into the Synagis shots at 7 mo old.

The program consists of about 6 mo worth of shots - two shots per month, one in each leg. They can either send a nurse to your home or you can go to the ped's office to get them. It is not a vaccine, it is RSV antibodies. I was told by the nurse that it had been on the market for 9 years (so about 11 years now) and that it was perfectly safe, but she could provide me with no other research and I wasn't able to find much on it at the time. The nurse will usually measure and weigh the baby and then administer the shots. She told me it does burn going in. If insurance doesn't cover the shots it will run about $1,300 per shot.

A lot of people who's kids had RSV will say get the shots. I know RSV can get pretty bad. But if I had it to do over again I would have said No Way. I don't think my kids were particularly at risk and I really feel the nurse used a lot of scare tactics to get me to agree. It caused a lot of stress for us because every time the nurse came I was screaming NO in my head but I didn't feel strong enough or like I knew enough to tell her I wanted to stop.

Personally, if your lo has already been through one winter w/o a problem I wouldn't consider getting it. If you do decide to, make sure they will come to the house so that you don't have to expose dd to the germy ped's office.
Good luck w/ your decision and go w/ your gut.

Yes to all of this, especially the part about having the nurse come to the house.

You know Connor from the SN forum. His pediatrician and pulmonologist suggested Synagis because of the severity of his airway malacia (laryngo tracheo AND broncho malacia) and because he had dysphagia with aspiration, and was already underweight. We really feared that if he caught RSV, not only would his airway become more unstable, but he would lose precious weight he coudln't afford to lose.

I did a lot of research, it's actually one of the "cleaner" vaccines out there, probably because it's not an actual vaccine. It's an immunoglobulin. There's no mercury, no aluminum, no formeldehyde. The shot is made from human DNA, though, so there is the slightest chance of issues there. I tried to find the package insert for you, but didn't find it right away. It'll tell you the exact ingredients (google it).

We did agree to it, but didn't start the series until December and only continued through March. He got really sick after his first series with a stomach bug that lasted for 8 days. I started to really worry until his brother started puking also, although Ian's tummy bug lasted only a day. I held my breath for January's shots, and he did okay, but did get a cold of sorts. Same thing in February. In March he contracted RSV. It was two days before he was supposed to get his next shot. He had a relatively mild case, and the drs of course say it's because he received the shots. Oh, by the way, they said that all the little illnesses he got right after receiving the shots each month were "coincidence". I think it was a combination of him being at the dr's office so often (and being exposed to bugs) plus his immune system being temporarily "distracted" because of the shots. We later learned of his primary immune deficiency (t-cell deficit). The Infectious Disease dr said that if we had known of the immune deficiency he would have strongly recommended Synagis because RSV is that much more dangerous to him.

So, that's our story. Between insurance and BCMH (Bureau for Children with Medical Handicaps), we didn't pay a penny for the shots. Having it to do over, I don't know what I would do. I have no way of knowing how sick he would have been over the winter if he didn't receive the shots. It wsa a rough winter, lots of illnesses, two surgeries, dozens of specialists appointments (this was all pre-diagnosis for him, we knew something was wrong with him, but didn't have the genetic testing back yet)

I'm surprised that Charlie didn't qualify for Synagis last winter, but I do think that you should read up on it and consider it for this coming winter. Oh, and this is one vaccine that actually IS tested on kids with medical issues, since those are the kids that it's targeted to. So if you find the package insert (I've lost my link to it, sorry) you can read about kids with pulmonary issues vs cardiac issues vs simple prematurity.

You should post this question in the SN forum, too, becuase many of us do or have done this vaccine, even when we don't do others. This is the only one Connor has received.

[bright-midnight]

I didn't research that one too much as our Ped doesn't routinely give it. He says that it really isn't effective and they only administer it if the parents specifically request it.

[Claire and Boys]

We don't have the rsv vaccine available here.. I think if we did, it might be one that we would get, only cos of DS getting so sick from it last year, at ten months, he was in intensive care on Christmas Day I have no idea why it hit him so hard, as a big healthy full term infant with no other health problems, and breastfed too, it was a mystery.

[2boyzmama]

Originally Posted by bright-midnight

I didn't research that one too much as our Ped doesn't routinely give it. He says that it really isn't effective and they only administer it if the parents specifically request it.

This isn't quite true, at least in my area. A child has to qualify for the series of shots by being at risk. Typical risk factors include: prematurity, pulmonary disease, heart disease, immune deficiency. So this is not routinely given to anyone, even if a parent specifically requests it. In some areas, like ours, the pediatricians don't even carry the shot, there is a Synagis clinc at the local Children's hospital and you either go there to get it, or sign up for home health care and they bring it to you. This vaccine is not on the AAP schedule, is only given during RSV season (which may vary depending on where you live) and is only given birth to age 2.