Decline synagis?

[momma_bear]

Has anyone out there declined synagis? If so, why?

I've been offered syngasis for my DD this RSV season and I understand the potential severity of RSV but I'm basically living a secluded life right now and I'm really scared of vaccines etc so I'm having a tough time deciding. Really the only way my DD would get RSV is if my husband brought it home from the office. I don't see anyone with kids and adults have to be "guaranteed" healthy before they approach the threshold. My preschooler is not attending school this year; I am not happy to keep her home, but I think synagis wouldn't alter my decision anyway - there are other virulent threats out there. I am worried about keeping my preschooler home so long but I will for sure send her to kindergarten next fall.

My concerns about synagis are around the monoclonal antibody production process (esp. the use of bovine proteins which could theoretically introduce a risk of BSE) and then of course the unknown long term effects of having any of the ingredients in the body.

I'm probably way over-analyzing this. Anyone have any thoughts on the above?

[Bokonon]

How old is your LO, and how many weeks was she?

My DS was 32 weeks, had RDS which resolved within a day, and our ped. didn't think he needed to get Synagis (though he turned 6 months at the beginning of December). He was exclusively breastfed and home with me, which I'm sure helped, but he has never had RSV.

I didn't know much about Synagis then, or RSV for that matter, so I trusted our ped.'s judgement (and probably still would; he's been wonderful).

[FiveLittleMonkeys]

We are getting Synagis. My ds was born at 33 weeks, was ventilated for several days due to RDS, and has four older, school aged siblings. We are minimizing our outings as much as we can, but with a dh deployed, we are still out a lot.

Both our pediatrician, who is wonderfully not pro-vaccine, and the neonatologist who follow my ds recommended Synagis. We don't vaccinate otherwise, but we have done Synagis. I don't regret it, since our ped told us at his 6 month check that we are having an unusually active RSV season here. My other important reason is that my dh is deployed, and I felt that I needed to do everything I could to try to avoid a hospitalization.

[yogafeet]

Synagis is not a vaccine. It is the antibodies to help your child fight off RSV. It is absolutely essential in my opinion. My girls who were 30 weekers got it through two winters. RSV can live on surfaces, so if somone touches something who has a common cold and then you touch it, you can get RSV. RSV will show up as the common cold for adults and strong children, but can be devastating to a preemie.

[squeekybuddha]

Let me preface this with the statement that I am NOT trying to scare you into getting the shots.

That said, my daughter was born at 27 weeks and was in the NICU for over 3 months. While in the "safety" and sterile environment of the NICU she contracted RSV, that in turn led to her being diagnosed with BPD. She was on a vent for more than 2 months due to the RSV and we had to watch several times as they "bagged" her because she stopped breathing when they tried to remove the breathing tube.

I also have a 3 year old son that I've kept out of preschool this fall and we are living a life of seclusion. But, she is still receiving the Synagis shots this season (she has already had her third dose). I can not risk or even think of risking her getting sick and entering the hospital again.

Now, please take this information as one case study to consider along with all of the others. No matter what your decision, I wish the best to you and your family!

[KCMichigan]

I would talk to your Pedi, as other said-- Synagis is not like traditional vaxes.

My girls were born just shy of 32 weeks. They were secluded their first 7 months---but remember someone can be contagious and *not* show symptoms until a day or two later. So a visitor that claims to be healthy, may not be and not know it.

We did Synagis--my girls were Fall babies and were 0-7 months through RSV season. They also had RDS and apnea--I was told by everyone that is was critical to keep them healthy to help their lungs mature. The minuscule risks of a the shot far far far outweighed the damage that RSV could have done to their lungs when they were that young. They were very healthy that year, but did have a few illness that DH brought home and/or I got when out in the community (groceries, bank, etc). But due to their prematurity, they both have asthma.

No matter how secluded you are--- germs have the potential to enter you home through visitors, your DH at work, mail, money, groceries, Doctors offices, etc. Seclusion will help, but it is not 100%.

The next year we did not qualify for Synagnis they both got RSV, one was hospitalized for several days for it- as a 14 month old. Her asthma is much worse and she is more prone to pneumonia than her twin sister- most likely due being so ill.

Today they are 4 and they have gotten RSV a few times. It always takes them a while to recover and we have to do breathing treatments around the clock- it often also leads to a secondary infection. At 4, it is not fun-- but we handle it. I cant imagine how hard it would be if they were that sick when they were infants, or how much worse their asthma would be due to lung damage.

Do your research and talk to your Drs. They are your most accurate source of information.

I hope you have a healthy & happy winter!!

[momma_bear]

Thanks to everyone who has posted so far in response to my query. I'm so sad about what such difficult and scary things people go through.

My LO is 6months. She was actually born at full term but had meconium aspiration which led to PPHN. She was in NICU 14 days and then went home on oxygen for 2 months for the PPHN. Luckily, she was not on a ventilator. Ped says it would be good to do the shots but she's not as in dire need of it as the premies. That's why I'm on the fence a bit. However, I know that there have been many horrific experiences with RSV and it's truly scary. It's just that when it comes to actually getting the shot I get nervous...

RSV season is only just starting here...

[FiveLittleMonkeys]

Well, FWIW, my oldest dd, who was born at full term, healthy, no lung concerns whatsoever, contracted RSV when she was 5 months old. She ended up in the hospital for 9 days, and was nearly ventilated twice. She was a sick little girl. This was in 1994, when there was no such thing as Synagis, and being a full term baby, she never would have qualified for it.

Even in full term babies, RSV can be a big deal.

Also, my son just got his 4th dose and has done very well with them. No problems at all!

[susienjay]

Originally Posted by momma_bear

My concerns about synagis are around the monoclonal antibody production process (esp. the use of bovine proteins which could theoretically introduce a risk of BSE) and then of course the unknown long term effects of having any of the ingredients in the body.

The bovine proteins are imported from New Zealand which has never had a case of BSE.

I'm a pretty cautious vaxer (my 3 yo 29 weeker has had 2 vaxes so far) but she got every single Synagis shot.

[momma_bear]

Originally Posted by susienjay

The bovine proteins are imported from New Zealand which has never had a case of BSE.

I'm a pretty cautious vaxer (my 3 yo 29 weeker has had 2 vaxes so far) but she got every single Synagis shot.

I'd be OK with New Zealand but when I called MedImmune (they produce Synagis) they said they also sometimes source the proteins from Australia and U.S. The U.S. has been criticized for not properly testing for BSE so I don't trust that source.

That being said, I think the theoretical risk of BSE is probably remote vs the much more immediate risk of complications from RSV. I will probably get the shots.

[justmama]

I am a non-vaxer but my 33 weeker got synagis as she was born in January with two siblings in school settings. My 34weeker did not get synagis because we were home all winter and she was on an apnea monitor and her older sister was only 4 and not in school yet. Synagis is not a vaccine and it's definitely something I would do if I were in your shoes. I wouldn't normally say that but my 34 weeker whom I thought was safe since we quarantined and we were super careful got RSV. She was hospitalized for it with serious difficulties. It's so so so scary watching your 5 week old kid turn blue and gasp for air as you realize you are 30 minutes MINIMUM from the nearest hospital. I don't want to ever ever live through that again. She's going to be 5 in three weeks and she's mostly a healthy kid but when she gets a cold, she's absolutely deathly ill. She just cannot shake the bone-rattling coughs and our last really bad cold she was back on the inhaler and laying on the couch from morning until night for days on end recuperating. Her pediatrician says it's because of the long-term effects of having RSV so young and the severity of it damaged her lungs.

[susienjay]

Originally Posted by momma_bear

I'd be OK with New Zealand but when I called MedImmune (they produce Synagis) they said they also sometimes source the proteins from Australia and U.S. The U.S. has been criticized for not properly testing for BSE so I don't trust that source.

That being said, I think the theoretical risk of BSE is probably remote vs the much more immediate risk of complications from RSV. I will probably get the shots.

The U.S. based component is in the parts per trillion and every batch is tested for BSE. My dh is a cell culture engineer that does production scale up work. He's worked directly with Synagis and when I asked him about the risk for BSE he said he'd consider it to be basically zero. If you aren't comfortable with it though then it might be better to skip it. I was just trying to address your concern about the BSE.

[sbrinton]

We're a delayed/selective vax family, but we did synagis for our 31 weeker who had mild RDS at first. We only qualified his first year.

This fall I think he had RSV. We didn't end up in the hospital, but he was fairly sick.

I've found that the biggest difference between our preemies and our full-term kid is their immune systems. The preemies, despite being breastfed, just get so much sicker, so much easier than their older brother who was born at term. This is true for our middle son now who is going on 3.

I'd do synagis if I had the choice...

[DocsNemesis]

We didn't do it. My ds was 32w6d, but on the borderline for my insurance covering it and they declined.

He did have RSV last year and dealt with it well. It was scary, but he really didn't have any issues with it. However, I think had we been offered it, we would've taken the Synagis stuff.

[momma_bear]

Originally Posted by susienjay

The U.S. based component is in the parts per trillion and every batch is tested for BSE. My dh is a cell culture engineer that does production scale up work. He's worked directly with Synagis and when I asked him about the risk for BSE he said he'd consider it to be basically zero. If you aren't comfortable with it though then it might be better to skip it. I was just trying to address your concern about the BSE.

I really appreciate this type of advice. It definitely helps and does address my concern about BSE. Thank you!!!!

I've decided to get the shots.

[momma_bear]

Thanks to all of you for your stories. I think you're all correct - it's too contagious and people out in the community just aren't that careful with colds (I never was until I learned better! "What's a runny nose?" I thought). We're going to get the shots.

[Harborsmom]

In the same boat!

I have a MAS baby 8/08 who progressed to ECMO and ended up with PPH, etc. We're in reverse isolation. I worry over to, but I think it saved us last winter- his toddler brother did get RSV from a contact and Harbor didn't. I'm doing it this winter, but I worry!

[Brooks44]

i dont think so that any one has declined synagis.........