Synagis?

I know many on here do not vax at all, but I'm curious about the opinion on here of Synagis? (It's not really a vax - it's a shot given monthly during the winter months to help boost a preemie's immune system against RSV.)

I'm delaying/not vaxing but I am getting the rsv shot. Personally I feel the benefits of it outweigh the risks especially in preemies.

We are delaying vax but getting the Synagis shot. The benefits far outweigh the risks, I think.

But I am also biased in that I had a sibling almost die of what we think was RSV back before they identified RSV...

I too delayed vax, but got the Synagis his first winter (born at 29w4d in June). I'm glad I did. DS was exposed to another boy who had RSV (didn't know he had it until later in the week), and thankfully, DS never got sick.

And I'm not one to do flu shots and the like either. I just didn't want to take the risk of a lower respiratory infection with immature lungs.

We have been spacing out her Vax, and are getting the Synagist shots. I won't post my vax views here, but I am very supportive of vax. We Weill likely start these in oct or November, whenever the Ped feels it is time to start.

Another delay/spaced vax who did the synagis. I had two older kids in preschool when Greg was born, and they were constantly bringing home the *snottynose* of the week bug, so it just made us all breathe a lot easier to know that Greg was getting some extra coverage from RSV. He didn't get it at all (didn't even get sick at all) his first winter, but then in his second winter (actually, wasn't even winter, it was late October) before we were even though to start the synagis again, he got RSV and wound up in the hospital for almost two weeks. The peds at CHOP said that it was the earliest they'd seen RSV season start, and sure enough, while we were in there, at least 5 other kids came in with it.

We did it with one of the twins, only one was born with immature lungs although they were preemie. Although the one that did get the shot did catch rsv, he was only in the hospital 3 day and has never had problems due to rsv. His twin didn't get the shot, damaged his lungs due to rsv, spent 14 days in the hospital on the first trip and to this day requires oxygen support when he catches a cold. Overall we've spent 98 days in the hospital with complications due to rsv. I strongly believe the shot does work although it may not actually prevent rsv it does prevent the nasty complications that can happen. We now get the shot for both boys and do not do other vaxes while they are getting the rsv shot.

We are considering getting it. When I wrote my wishes when I had him we refused all vaxes and mentioned that if he was still in the hospital when synagis was offered we would like to talk to his neonatologist about it so we could see if it was right for him. Now since he is home, I am going to bring it up with his ped at his next appointment. Apparently in my area there have been a lot of RSV cases in the last few weeks.

We are doing the Synagis shots, for the many reasons previous posters mentioned.

Thanks for the input. It sounds like it might be a good idea especially since we're flying for Christmas. Now I just need to see if we're approved for it.

We did Synagis and I'm glad we did. We won't be getting it this year b/c ds won't qualify.

We did it last year and will do it again, for the same reasons as previous posters.

I guess I am alone in saying that for a breastfed preemie, I do not recommend it. Although the two studies done, did show good results, I would like to see a study done on breastfed vs formula fed preemies. I do not believe the best way to boost anyone's immune system is by injecting genetically engineered antibodies or chemicals. If anything, as their breastfeeding mother -- I would want to get the shot so they could more *safely* get such antibodies from me rather than having the crap injected right into their little 3lb bodies...of course, that is not an option.
I have met several preemie mothers who swore that their little ones stopped thriving as well or had "minor" respiratory issues after each shot. Anecdotal for sure, but it doesn't sit well with me -- maybe it could lessen the rsv risk, but at the same time weaken the immune system overall. Not for us. JMO.

I'm pretty sure we'll be getting it for our ds when he gets out of the NICU, although I have no plans to vaccinate any time soon, if at all. Of the three babies I know who have ended up in the hospital with RSV, all were full term and exclusively breastfed when they got it. I agree with twins10705 that injecting engineered antibodies and chemicals to boost the immune system is not the best way and to that extent am a little leery of it, but without more research indicating possible dangers I think I'm just more afraid of how severe and damaging RSV could be.

My last three babies (32w, 29w, 28w) all had the Synagis - and all were breastfed. I have a friend who worked on the clinical trials and RSV can be fatal even in full-term babies. The benefits definitely outweighed the risks for us - I also arranged to go to the doctor's office either first a.m. appt or first after lunch so we wouldn't have to spend time in the waiting room.

Just be aware of the cost, too. It's about $1000-$1500 PER SHOT, and they'll need 6 of them over the course of the winter. We ended up owing OptionCare about $1500, and that's after insurance paid their bit. We also ended up owing the hospital a couple hundred to cover the home health nurse who came to the house to administer the shots. My son also had an allergic reaction to his 5th shot.

IMO (and it's just my opinion, nothing more), if push came to shove and we were in that situation again, I'd pass on the Synagis, and not just becase of the allergic reaction in my ds, as long as I was able to breastfeed. I have a strong anti-vax stance, but in this situation I fully believe it's something the parents need to research fully and go with what their gut tells them.

Just be aware of the cost, too. It's about $1000-$1500 PER SHOT, and they'll need 6 of them over the course of the winter.

Yes, you definitely need insurance or a doctor that "covers it" for you, as mine does for folks without insurance. In my area, all Synagis recipients go to the pediatric pulmonologist, and he does the shots all on one day so he can order a larger amount and split it amongst the recipients with insurance that fully covers it. That way, the uncovered ones still get covered anyway. My insurance fully covered it though. We *might* have paid a co-pay, but I can't remember... that would have been $20 every 4 weeks.

Hope you folks don't mind me being here, as my preemies are older now (5 and going on 10)!

But yes, we got the Synagis. After watching my 1 full term baby (yes, breastfed, tyvm!!) get RSV that turned to bronchiolitis, that turned to reactive airway (that she thankfully outgrew after a couple years), I begged the doctor to approve Synagis for my 36wker with immature lungs. My oldest was born before Synagis was available, and we just stayed in the house. A lot. Didn't really go anywhere til spring (he was born in Nov). Not fun.

If you're firmly decided on getting it, hound the doctor about getting it approved. It can take a lot of pressure for the insurance to cover it, because it's so blasted expensive. We know a family with twins-- one ended up hospitalized for several weeks for RSV complications and they STILL wouldn't approve Synagis for the other! Insanity.

As with any shot or medicine, yes, there are bound to be downsides. But unlike some other things that have recommended vaxxes, RSV is very common, and complications are not nearly as rare as some of the other diseases.

But yes, we got the Synagis. After watching my 1 full term baby (yes, breastfed, tyvm!!) get RSV that turned to bronchiolitis, that turned to reactive airway (that she thankfully outgrew after a couple years), I begged the doctor to approve Synagis for my 36wker with immature lungs. My oldest was born before Synagis was available, and we just stayed in the house. A lot. Didn't really go anywhere til spring (he was born in Nov). Not fun.

Out of curiousity LOL

did you stay in the house with the second one? or did it work well enough you felt you could leave occasionally? Our NICU director was telling me that we pretty much should still stay isolated even with the Synagis shot. But, then again, my daughter's lungs are pretty bad.

(this is going to be a long winter...my daughter should be coming home Oct/Nov ish :p )

Sarah, I did not stay in the house with my preemie past his due date (the hospital said to stay in for 6 weeks after we came home, and that ended up being right before his due date), BUT... if I had a preemie with your daughter's health situation, I'd probably stay in for the winter, with maybe the exception of going to individual people's houses who aren't sick. It is a tough call, and you really have to assess the health of your own child before making that decision, kwim? My son was ok, but he also was breathing completely on his own the day after his birth, so while his lungs were immature and he was given surfectant, he didn't need breathing help during his 4 week NICU stay, except for about the first 18ish hours. That can make a huge difference. In my son's case, I took him out, but kept him in a sling with the fabric over his head so people couldn't come up and touch him without my permission (yes, people do this ALL the time at places like Walmart and such :irked:), and I didn't let people hold him at church for the first few months.

If I'd been in your position though, I'd have likely been alot more careful about going out. Yes, it will be a LOOOOOONG winter for you. :( I know I was about to claw my eyes out during the 6 weeks that I stayed in! Just make sure DH lets you go shopping and other stuff as much as possible, so you can get out and about. That's where the ability to take a bottle actually came in handy with DS (he was 100% at the breast when he came home, and was still able to take a bottle whenever necessary - I got lucky).

We wanted to do the synagis shots, but we couldn't get our insurance company to approve it. Clara was 35 weeks so they didn't consider her premature enough (even though she only weighed 3lbs 10oz at birth and the ped really wanted her to get the shots) We stayed in most of last winter. It was really hard, but we got through it. We'll probably be staying in a lot this winter too. Hopefully my older kids won't bring home too many things from school.

Out of curiousity LOL

did you stay in the house with the second one? or did it work well enough you felt you could leave occasionally? Our NICU director was telling me that we pretty much should still stay isolated even with the Synagis shot. But, then again, my daughter's lungs are pretty bad.

(this is going to be a long winter...my daughter should be coming home Oct/Nov ish :p )

We took sort of a middle road with the youngest. It's just so much harder to stay home all the time when you have another kid at home. :dizzy: So the Synagis helped me worry less about necessary trips, but we still didn't make many "just for fun" trips, KWIM? We made people come here, and they all knew the drill-- take off your coat, then straight to the bathroom to wash your hands before you even LOOK at the baby! (and I wonder why dh doesn't want another baby! :p )

BTW, your dd is adorable!!!! Here's hoping she's healthy and headed home soon!

Out of curiousity LOL

did you stay in the house with the second one? or did it work well enough you felt you could leave occasionally? Our NICU director was telling me that we pretty much should still stay isolated even with the Synagis shot. But, then again, my daughter's lungs are pretty bad.

(this is going to be a long winter...my daughter should be coming home Oct/Nov ish :p )

Not the one you asked, but I'll give my 2 cents anyway, LOL! My third was my NICu preemie (although all three were *technically* preemies born at 36, 34 and 32 weeks, respectively) The 32 weeker was the only one to get the Synagis. He was born in Dec, came home New Years Day, and we really did not go out of the house with him till well into Spring - I think the first time we took him to church was Easter Sunday, in late April. He didn't go into a grocery store till he was WELL over 7 months old - I just did the grocery shopping in the evening when Dh could stay home with the kids. We did allow him to be around immediate family members (my parents, DH's parents, and his brother and SIL) That was it till probably May or so - we were very careful. He didn't get RSV that first winter, but he did get it the following October, and was hospitalized. It was sort of bizarre, cause that's early for RSV and it was before we'd even been scheduled for the Synagis again for that season's cycle.

We had to fight to get our insurance to pay for the shot for one of the twins. We ended up with a copay of $50. However after the huge medical bills from a bad case of rsv in the twin who didn't get the shot (who now has rad because of the rsv) we are now covered fully for shots for both boys until age 3.

Yes, DD will be getting Synagis, starting at her next appointment. She will technically be too old (6 months) but her pediatrician petitioned for her to receive it using her adjusted age. She just barely makes the cut off for receiving the injections.

I started doing the research the day after she was born. I asked the NICU nurses for as much literature as possible on the benefits/risks of Synagis. I had pretty much decided to have her get it even before my milk dried up completely 10 weeks post partum. When I realized that I had no choice but to formula feed my daughter, I decided right then and there that she would get all the help she could to stay alive, no matter how "engineered" that help may be. If it keeps her lungs functioning, I say shoot her up! :lol

And Knittin, thank you. Before I got to your post, I had a racing pulse, was red in the face, and breathing heavily with tears in my eyes. This road is hard enough to travel without being preached to about things we KNOW are important, especially bfing since so many of us have struggled.

:gloomy:

p.s. We went through a winter with Synagis with our 29 weeker and he never once got sick...good luck to all of you...

Two of my friends' 29 weekers did too. :hugs to you all with wee little preemies.

Geez, what a thread. I just wanted to say that I was not able to get my dd the synagis her second year (she was not elgible because she was full-term and had had good respiratory function for her first year...off the vent for 11 months) and she got RSV. :( It was bad. A nightmare. She now has some lung damage which more than likely came in part from RSV. So ignore crazy poster and go with your gut if your child is elgible for the shot.

My dd was approved for her 2nd season of Synagis and I am relieved! We were going to spend the winter in lockdown again but with the injection she should be able to enjoy some time with others:wink

DD got only one shot last season because by the time I found out about it we were at the end of the season. She was born at 36 weeks, spent time on a vent, was given serfactant, has had laryngotracheamalacia, and I, along with several others in my family, have asthma. She has not had any respiratory infrections. Do you think I need to pursue getting her Synagis again? When does the season start?

Sorry to join this thread so late, but what are the qualifications for getting the shots? Would my twins qualify if they were born right around 36 weeks? I always am getting colds and am sick and I would just die if I got one of them sick with RSV.

wow, it's a good thing I came to this thread late... there was another thread on Synagis right in the begining that got moved... our drifter was a gem on that thread too. People just don't get it.

We got synagis from Nov - April (CA) and will get it again this year. ds still has respitory issues and even though he will be 2 in Feb, being ventilated and being born so early, well, it definately took a toll.

But, we were really isolated last winter, and ds still got a few colds (7!) but none requiring breathing treatments, and definately not RSV. We also got the flu shot.

This summer we've been no-holds-barred on the germs, and ds got a few doozy colds which required breathing treatments, but nothing too horrible. This winter, we'll be going on semi-lockdown, getting synagis and the flu shot again, and won't rest again until April.

RSV is one scary virus - even for full term kids.


You know, I think it's funny when people state that it hasn't been tested on preemies - it's been tested on EVERY preemie I know, and the results are great. As for not knowing if it causes death or neurolgoical issues and not tested on pregnant women - well, it's like saying it hasn't been tested on horses and cats. I think they'd have to say the same thing about artificial sweetners. absurd.

hugs to everyone who was pissed off. Ignore that person - we know what's best for OUR kids, and don't need any ignorant narrow minded fool giving vulnerable people bad (really bad) advice.

stella

Sorry to join this thread so late, but what are the qualifications for getting the shots? Would my twins qualify if they were born right around 36 weeks? I always am getting colds and am sick and I would just die if I got one of them sick with RSV.

Well only one of my twins (born at 35 weeks 6 days) qualified. He was born with lungs that weren't mature and spent time on the vent along with getting serfactant (I don't think I spelled that correctly). His twin was born fine. However both qualify now until age 3.

You know, I think it's funny when people state that it hasn't been tested on preemies - it's been tested on EVERY preemie I know, and the results are great. As for not knowing if it causes death or neurolgoical issues and not tested on pregnant women - well, it's like saying it hasn't been tested on horses and cats. I think they'd have to say the same thing about artificial sweetners. absurd.

Agreed! Synagis is *mostly* given to preemies. The only full term babies that get it are ones with lung/heart issues at birth, as far as I know. So hasn't been tested on preemies? It's tested on preemies everyday! And when I was doing my research (because I researched this pretty fully when DS got out of the NICU and we were getting close to RSV season), I could not find any *serious* adverse effects of this product. With vaccines, you can find everything from brain injury to death, but for Synagis, all I found was upper respiratory infections. And as has been stated repeatedly, RSV is a LOWER respiratory infection and much more dangerous than upper respiratory infections to a baby born with immature lungs.

And why should I care if Synagis hasn't been tested in pregnant women? My preemie isn't getting pregnant anytime soon, even if he were a woman! :lol

If you want to talk about this with some of us, feel free to start a thread. I know technically it is a breastfeeding forum thing, but maybe those of us who "know" you can give you some ideas if you are open to them.

P.S. the ignore button is an awesome function.

Thanks, but I have unfortunately researched and tried everything over the past month, trust me. If you look back there's even a thread that turned into pumping tips for me. After that thread I changed the one thing I hadn't been doing which was to only go 5 hours between sessions at night (I was going 7). Even that didn't work. My body just isn't working the way I think it should. :gloomy: It's just time for me to admit defeat.

And I hadn't noticed the ignore button before oops :lol

My daughter got Synagis for 2 seasons. She qualified for the second season since my older daughter attended preschool at the time. If you are particularly concerned, talk to your ped, they can usually help you decide if the second season is useful or not and find a way for insurance to cover it if you choose to do it.

And Knitting in the Shade....:heartbeat :bow

Preemie mommies :hug

Just want to let you know for those who don't go to the Vax forum or those who are new here that there have been TONS and TONS of threads about Synagis and I personally did HOURS worth of research on PubMed on at least one of them. These threads always go badly. Always. Some well meaning but uninformed asshat always comes on and says fresh air and sunshine and washing the hands well with Dr. Bronner's is all that's needed to prevent RSV, and if you get it what's the big deal with a little runny nose and cough because squirt a little breastmilk in the nose and give a teaspoon of organic flaxseed oil and you're back in business :blah UGH!

Go do a search of MDC of Synagis and hopefully the threads will come up. The one I posted a jillion links on was closed :irked: because it got going like this one is and all that good research went with it :irked:

But in summary, not only have I done my research and then some, but my career is in drug safety and I have over 10 years of experience working with commerical pharma and FDA on this (and I'm going to come back here and delete that in a few hours because I don't like what I do "out there" in cyberspace) and after thorough research (including sources only I and a few others have access to) I gave my 31 week preemie twins Synagis without batting an eyelash. They and my latest child are unvaxed. They have never had antibiotics. They have fevers that reach 104.5 and I don't give Tylenol. I treat their ear infections myself with garlic mullein oil and Vitamin C. They eat organic and whole foods. We have a "green" house. And you know what? I STILL GAVE THEM THE DAMN SYNAGIS and I would do it again in a heartbeat if I had another "real" preemie.

:hug to everyone who has to justify your existence and decisions to people who have never walked a mile in your shoes. :hug

Thanks for your input, Periwinkle. I posted this thread and am interested in all views on the subject. Thanks for your honest opinion!!

What is it, is there a link to information about it? benefits/risks?

Your best bet on the internet is probably to google it. I don't know of any great websites to recommend, though. Ask your ped. as well. It is not a vaccine. It is a shot made with antibodies from a person who is more resistant to RSV (at least this is my understanding from what my ped. told me.). You have to be approved for it.

It is a shot made with antibodies from a person who is more resistant to RSV (at least this is my understanding from what my ped. told me.).

I think it's actually made from antibodies from horses. They inject horses with RSV, then pull out the antibodies and make the Synagis from that. Or so I heard/read somewhere. :lol

I wonder if it contains Mercury, someone told me it can lead to autism

I wonder if it contains Mercury, someone told me it can lead to autism

I do believe it is mercury free.
http://www.medimmune.com/pdf/products/synagis_pi.pdf

Synagis is 100% mercury free. Meaning, not only is it not used as a preservative, but it is not used at any stage during the product's manufacture.

I think it's actually made from antibodies from horses. They inject horses with RSV, then pull out the antibodies and make the Synagis from that. Or so I heard/read somewhere. :lol

Actually it is a monoclonal antibody so it's all produced in a lab using cultures of cells. It is produced from animals but mice (I think). Here's a site that explains the basics of monoclonal antibodies. http://www.accessexcellence.org/RC/AB/IE/Monoclonal_Antibody.html

My 32 weekers qualified their first year for Synagis only because ds was diagnosed with BPD, and I was so thankful (still, we didn't leave the house until late April). We don't qualify this year and I am a little freaked out because my friend's baby had it at the age of nine months and died at the age of 16 months--the doctor who did the autopsy confirmed that she died of undiagnosed asthma that was likely a result of the RSV infection she had as an infant. She was born at full-term. I am not one to take chances with my kids and, for me, the chances of them having an adverse effect (which they never did) from Synagis was BY FAR preferrable to the possible alternative.

Yes we are doing the Synagis as well now. My twins were born at 35 weeks and my insurance is covering the $25,000.00 that it will cost. I have one in preschool and a 2 year old who goes to lots of playgroups so I can see snotty noses coming our way this winter.

congrats on your twins! I guess it would be 25K with two needing them!

I feel so fortunate to have found this thread. My second boy just couldn't wait for his due date and thus created his own three and a half months early on 8.20.06. I was so completely unprepared for all this. (First son was a home water birth). Bad, bad lung issues among other things. . . Harrased about vaxing by the hospital staff ( exhaustive research and soul searching leaves me with another firm no on this issue ) however the damn synagis! I have read every study I can track down, listened to my favorite nurses suck it up about the Vax issue, but implore me to go for the synagis shots. I have been so back and forth. He is getting my milk and is still a while away from coming home. Yet my three year old is in preschool. . .
You ladies and your advice here has been a God send. I feel actually OK about the Synagis now. It still worries and discusts me I will be having my
3lb boy injected with rat/mice cells and other junkus, but I never would have imagined a 25 weeker who got as sick as my boy did would be here now, and thriving at that. Thanks again for helping me make this extremely tough call.

You ladies and your advice here has been a God send. I feel actually OK about the Synagis now. It still worries and discusts me I will be having my
3lb boy injected with rat/mice cells and other junkus, but I never would have imagined a 25 weeker who got as sick as my boy did would be here now, and thriving at that. Thanks again for helping me make this extremely tough call.

And Welcome to you! I can 100% relate to what you have gone thru with my own 24 weeker. And I did the same you did- researched researched reasearched!! I delay vax which is like talking in chinese to the nicu staff but they were very receptive to my reasoning and gave me theirs as well.
One thing we did as Maggie is also our second, like your boy is- we were very upfront from the word go about our parenting beliefs. We explained that we use AP, exclusive breast feed etc. But we did it in a way to make the nicu staff feel we are all on the same team and we all worked together.

But getting back to this: I am doing it because I have a 4 yr old, Maggie went home on O2, and I have seen preemies have to go back to the hospital w RSV and God knows what else they could pick up there.
I look forward to seeing you more on this board.

We don't vax, we were approved for it by insurance for our son but we decided to decline it.

I am however keeping a good supply of sodium ascorbate around, am breastfeeding and am keeping him in a sling when we go out and about. We have weathered our first cold (lungs stayed clear) but we're definitely being careful about RSV.

eta... by saying this, I do not in any way intend to imply that you should not get it or that anyone should not get it! Whichever way you (meaning anyone on this thread) decide, stand firm with confidence in your decision!

We also keep a stash of healthy aids on hand, Maggie is slinging where ever she goes, always has, she breastfeeds etc. She received her first shot yesterday.

[QUOTE=Cyneburh;6478510]We don't vax, we were approved for it by insurance for our son but we decided to decline it.

I am however keeping a good supply of sodium ascorbate around,

What is sodium ascorbate?

it's vit c, no?

Well, I have to say that I am incredibly glad that we decided to do the synagis with Rusty. He was born 6 weeks early on 10.3.06, and last week two of my older boys and I got sick - nasty snotty nose, etc. Rusty started having snuffly nose on sunday, took him to ped on monday, did the snot test, it's definitely RSV. He's been a bit fussy and we've been doing nebulizer treatments with him, but his lungs are staying clear, thank God. I definitely credit the synagis with keepign him out of the hospital.

Sodium ascorbate is a form of vitamin C that is more easily absorbed and tolerated by the body. It's safer for you then regular ascetic acid or the ester-C (calcium ascorbate).

I buy mine in a powdered form that lets me spike the kid's drinks with it. So for my son, I'd put a measured amount (250 mg) into a small bottle and then attache the bottle to the pump. I'd pump an ounce or so while he was eating and then give that right back to him.

It made a huge difference and as bad as the cold was, I really think that without the SA he'd have been much, much worse for longer. The SA made a very obvious difference in how he did. No idea if it was RSV or not but it fit all the symptoms except wheezing and fever. And we did have what looked like minor wheezing but the ped listened to the lungs and said they were clear so we just kept an eye on him. A very close eye.

What is the snot test?