Third Year of Synagis

[bryantem]

The ped submitted a script for Synagis to see if it gets approved. Her pulm doesn't think she needs it, the ped doesn't think so either, but put the script through anyway because the ENT said she would be a good candidate for it. Granted, insurance probably won't cover it anyway, but I don't know if I want to put her through another year of monthly shots. She is not a little baby anymore. She understands more and I don't want to create an aversion to medical personnel as well. Addy has been very healthy since the trach came out. She has had a couple of illnesses, but they were easily managed at home. Does anyone have any input?

[lil' G's mom]

G only got it his 1st year.... Last and this year is a no. Last yr he did pretty good, had pneumonia a couple times but were able to handle at home, and has colds but we work thru. He is pretty healthly overall and at this point unless there was a significant risk to exposure I would probably decline just to not put him thru it. He would require 3 shots based on weight and that is just too much. It's already a fight just to get him in the drs I can not imagine what it would be like after doing that once a mths for the next 6 mths... No Thank You!!!!

[Niff]

If it were Mackenzie, I would get it. Since coming off the vent at night in February, illnesses really hit her hard. I suppose the support at night helped her cope during the day. I definitely understand that it doesn't completely protect her from catching RSV, but we could use all the extra help in keeping her home. She also does well with shots. She cries, but if you distract her she forgets about it as soon as it's over. The nurse gave her a DumDum after her last round of vaxes in September, and it worked like a charm.

I would go with your own gut, though. If her pulmonologist and pediatrician are in agreement for her not needing it, then really you have a 2:1 against it already. :)

[saywhatyouwill]

we never got it even when emily had her trach. they aren't even coordinated enough over here to suggest the flu shot - we had to figure out ourselves that she should get it. i won't be giving her the flu vaccine this year, either, now that the trach is gone.

[Linnae's Mom]

Last winter Linnae was almost 2 yrs olds. Insurance denied the synagis shots and we wound up in the hospital with RSV for 5 days and pneumonia a month later. I'm sure they wish now they had paid for the shots. The winter before we had almost no illness and no hospitalizations. If insurance covers it, I would go for it.

[drct1245]

Does she have any BPD? (sorry, I can't recall) If she does, then I would highly recommend it. The RSV is so nasty on the lungs. Ayden got the shot for 3 seasons (insurance pd too). The first year he didn't receive it, last year, he got RSV and was hospitalized for 6 days. In talking with his pulm, she said that she had kiddos who had lungs like Ayden and they didn't receive the synagis also got RSV and landed them in the hospital. There are even a few on the board that this happened to, one of which actually has good lungs too.

I was thinking that the 10k the insurance could've shelled out, would've saved them 80k in hospital bills. :)

The shots are pure torture, however, the hospital stay was much worse, IMO.

Good luck with the decision... it's a tough one.

[WeAdoptKids]

Joseph got it through 6 years of age. He was very tiny at the time and had a hard time fighting things. Up until 9 he weighed only 30 lbs. This past year and a half, he has shot up to 45 lbs. Now sure what that came from but he is healthier and happier.

I say do whatever you think is best. You are the mom.

[destinyandmiracles]

Well Ashton had it for the first two years. The third year I wanted him to get it but because he was bigger, it would be 3 shots each visit for all the months he would get it. And doctor said he didn't need it. Studies show that it is usually only helpful for first two years.

However, I met a family this past December in the ICU while we were there getting the trach. Her little girl was three years old. Former preemie, lung issues, PH (no trach)...she had RSV. After two weeks of fighting she passed away. VERY SCARY.

I don't know what to tell you.

[BennyJam]

Our insurance approved it for Ben and Claire for 2 years. The third year it was not approved and sure enough they both got RSV and ended up in the hospital for 8 days. Up until then, Ben had been extremely healthy - only small colds here and there and never any hospitalizations. But they both have BPD, which is obviously a factor. If I had had the choice, I definitely would have gone for the Synagis. My understanding is that insurance will only approve it for a third year if there another underlying condition (e.g. cardiac issues).

If I were in your shoes, I would go for it. My daughter Claire very nearly needed to be intubated, even though she only has very mild BPD.
Haley

[madelyn and rynns mom]

My girls both got it for the first 5 years. Ours were sent to the house and me and one of our nurses gave them. I did them myself when it was just 1 shot each, but when the dose moved up to 2 shots each I added a nurse so we could do both shots at once. I say better safe than sorry!


Kris:)

[Ainsley's Mom]

We have never had it. If her pulm and ped don't think she needs it I wouldn't do it.

[destinyandmiracles]

Susan, not sure I agree with that. I only say this because the little girl that I know that passed away last year from RSV was told by her doctors that she didn't need the shot anymore. They don't always know everything and sometimes forget how fragile these kids are when sick.

[kadiera]

We asked this year; pulm was of the opinion that "it couldn't hurt," pediatrician said, "we usually go by what pulm says. Insurance said no.

Alexander has already had RSV (about 2 months after we left the NICU, while still on the vent. At this point, I guess we'll play it by ear. We were ambivalent about getting it anyway - soooo many shots, so many tearss.....

[bryantem]

I guess we are going to just play it by ear. Like Janet mentioned, pulm didn't think she needed it, but it was up to me, ENT said she would be a good canditate and the ped said that she didn't think she needed it, but since the ENT mentioned it, it couldn't hurt. She does have a history of BPD, but her her lungs have cleared up beautifully and her lungs sound perfect

[Ainsley's Mom]

Susan, not sure I agree with that. I only say this because the little girl that I know that passed away last year from RSV was told by her doctors that she didn't need the shot anymore. They don't always know everything and sometimes forget how fragile these kids are when sick.

I guess it depends on the kid. Ainsley did catch RSV when she was a baby (under a year). This was before I knew anything about the Synagis shot. Our doctors never mentioned getting it. She did end up in the hospital for a couple days. Since then we still haven't had the shot and she's never been hospitalized again for an illness. Last year she got swine flu and was fine (it was confirmed by lab test). Not every kid with a trach is fragile. Yes she's miserable when sick but not fragile. So I think you have to base it on the kid and their history. And Addy is decannulated so I'm not she has a history to make it worth it. But it's up to you Beth if you think her health is at risk. If she's healthy and managing well without the trach then I'd want to treat her as any typical kid her age (they don't give this shot to healthy non-trached kids) and not make her go through the monthly shots unless it's really necessary.

[landzsmum]

Nothing to add except thanks for starting this discussion. We are struggling with the same decision. On top of which, I feel that if Lily (trach'ed) is going to get Synagis, then her twin (no trach) should get it too. We never go out, and have virtually no visitors. Then again, between therapists and nurses there are a lot of folks in and out of our place. I'm totally on the fence as is our ped., waiting to see what insurance says.

[Wooders80]

We only got it for the first two years too. As long as you trust the pulm I'd be tempted to go with that advice. Dominic got RSV the first winter without Synagis, and ended up hospitalised with it for about a week. He still had the trach, and we took him to hospital to get checked out for a chest infection and he ended up catching RSV there. Despite this though, I don't regret not having it for a 3rd year, think our circumstances were just a bit unfortunate (two bugs to deal with).

In the UK it is only approved up to 2 years of age. After that, I was told by our pulm the research suggests it is not as beneficial. Hope this helps - tough decision.

[llwilliams8]

Our daughter just turned 2 in September and our drs. said no to it this year. They said insurance and Medicaid is being extra strict this year and denying most kids 2 and over. We are just going to try and avoid crowds and keep sanitized as much as possible. My daughter is rarely sick so they felt comfortable with her not having it.

[lynn]

Joseph did not get it last year (at age three) insurance would not pay for it, and after asking our pulmo~ he said there was no evidence it really covered them after age two~ I decided to give up the battle with the insurance over it.

[destinyandmiracles]

Susan, I agree it does depend on the child.

I should have mentioned that the little one that passed away in December was not a trached child either.