My 24 weeker doesn't "qualify" for synagis this year?

Hello everyone, I know this topic has been talked to death, but I need someone to talk to me who has been in my shoes. My twins were born at 24 weeks in August of 2004. My daughter Emma lived 11 days before she went back to Heaven. We miss her so much. My son Josh is doing GREAT. When I say great, I mean GREAT. He didn't come home with O2 or any type of monitor. He hasn't been sick one single time since being home from the hospital in November 2004. Yes, I am a paranoid POP, and last winter when he came home we were VERY strict about who came and went out of our home/prison (LOL). We did not allow any children and of course hand washing was a must. He did receive synagis last year because he wasn't 1 yet and he just came out of the NICU. However this year, the doctor's office is saying he doesn't qualify because he hasn't had any issues or illness with his lungs. Okay, so I am being punished because I make sure no one that is sick comes near my child? All strikes are against us, he has no older school age siblings, he doesn't go to daycare ( I quit my job to stay home with him so he wouldn't be exposed to germs), and he hasn't been sick. This summer we have taken Josh everywhere, Church, parks, malls, you name it and he still hasn't gotten sick. The doctor's office states they don't ask the insurance company for approval for babies that don't "qualify" like my son, because they have no diagnosis or grounds to ask for the shot. Okay, how about the fact that he weighed 1 lb 5 oz and was on the vent for 2 1/2 months??? Just because he hasn't been sick doesn't mean he still isn't high risk if he were to get RSV right?? I am so MAD. The insurance company won't do anything unless they get something from the doctor's office asking for approval, but they aren't going to ask for approval!! HELP ME! Has anyone had a preemie that was completely heatlhy when they came home and didn't get synagis the 2nd year? I have read the horror stories on this site when some of your babies have gotten RSV because they didn't get the synagis. But I don't know if those babies had other underlying problems with their lungs or not, like I said my son didn't come home with O2 and hasn't had any issues with his lungs since being home. Any feedback would be much appreciated. Thanks, Christina

22 Replies

  • Same story
    This is our second season, too. 26 weeker, 1lb 12oz, Fall 2006. Our pediatrician office told us the same thing. I pushed the matter and when asked for approval, the insurance company still denied it.
    My preemie came home on O2, but is doing wonderful. My only solution to the problem was to endure another year of lock down. Both me and my daughter are going crazy!
    I read the horror stories, too, of older children ending up back in the hospital with RSV, though my doctor reassures me that my paranoia and my healthy daughter should work well at combating any chance of Charleigh contracting RSV. It really is a ridiculous situation. The nurse at my ped's office told me how she was horrified at denial of some very needy patients. They apparently aren't giving it to anyone. Even those whose health greatly depends on it.
    I say continue to be militant about the no germs policy. We have only been sick once in two years (not to include the first three months). She needed antibiotics just before christmas, but quickly recovered. I even took the risk to let her celebrate with everyone, and I mean everyone.
    Just be thankful everyday that your health issues really are minor in the grand scheme of preemie babies.
    Much love and patience,
  • Hmmm, I'm a bit concerned...
    I'm not sure what state you reside in, but here in Idaho, they have a program that they offer NICU graduates called INFANT/TODDLER PROGRAM that they automatically qualify for due to the amount of $$ that is spent to reside in the NICU. My son automatically qualifies to have synagis due to him just being a 26 weeker. I would research your resources and if at first you don't succeed, seek SSI. His birth weight automatically approves him!
  • I feel your pain!
    Unfortunately, I don't know if you know, but there's more to receiving Synagis than just having a preemie. There are many factors that depend upon whether your doctor can even make the argument that your child needs Synagis, and it doesn't sound like your son qualifies.

    First and foremost, your son has to have had a history of repiratory distress, not just a prior respiratory illness, be dependent upon respiratory therapies (like oxygen or albuterol, etc.), plus a history of other illnesses (generally since birth or shortly thereafter) that potentially puts him at risk currently (scarring on the lungs due to pneumonia, cystic fibrosis, etc.). They also have to be currently underweight, even on a preemie growth chart (I think it's below the 20th percentile, but don't quote me), and are to be deemed at substantial risk in the future.

    I am not defending the insurance company, please believe me, but it does have to justify $1800-$2500 PER VIAL of the stuff retail price when she got the shots. (My daughter required TWO vials for the last two years; we accidently received the bill one time for it, and it was like $5,000!) I think they weighed the cost of the Synagis against her previously incurred $2 million dollar health care bills up until she was three years old, and decided that it was cost effective for the prophylaxis Synagis than another heart surgery or a 90-day ICU stay...Unfortunately for other patients, it's not as cut-and-dried, since not every patient that SHOULD qualify is as sick as my daughter was.

    She got the shots every year until she was four years old, and the final year she received them was a huge battle, even with her history. Lauren qualified during those times because she was a born a preemie (32 weeks) - 4 lbs. 2 oz. - with respiratory distress, was/is within the 5th percentile with her weight; she was born with Down Syndrome, has a lowered immune system, adelectisis of her right lung, and a heart defect; she contracted pneumonia 6 times before she was 9 months old, and several more times after, and became oxygen dependent AND relied upon Albuterol, she has substantial scarring (fibrosis), plus she has pulmonary hypertension, has 1/10th of the alveoli in her lungs that normal lung tissues have - most biopsy samples have 20-30 per slide; Lauren had 2-3 per slide! She also was born with a avio-ventricular canal defect (big hole in her heart), which required surgery at 4 months old, and then another heart surgery to repair her mitral valve due to endocarditis (bacterial infection in her heart due to pneumonia) at two years old, when we spend 3 months in ICU.

    In Lauren's 3rd year, she went almost an entire year without getting any illness, and they tried to cut her off. So even though the doctor said she still qualified for it, because she hadn't gotten sick in nearly a year, they still tried to discontinue it. We fought it the that time (when she 3, going on 4) and won. The next year, she had not gotten anything except a small cold, and even though we were sure she still qualified, we fought it and lost (that year she was 4, going on 5).

    So if my daughter, with all her issues (she's 7 now, and still only weighs only 32 pounds), requiring oxygen while sleeping, and sometimes while awake (her oxygen saturation on room air while awake is about 93-94%), and she can't get it, then I'm not surprised that other's are being denied, especially those without a history of respiratory illness AND distress, plus a huge risk factors of future illness and distress.

    They need to find a way to lower the cost, that's for sure! I put together a list of factors that the insurance companies consider when Synagis is requested for a child on this thread:
    Qualifications for RSV Prophylaxis - Synagis Good luck to you all! :)
  • In the same boat
    We livein Canada and had the same issue this year. Our 26 weeker did not qualify because she was too healthy. She was 1 lb 10 oz at birth and had BPD and RDS. She was ventilated for 6 weeks and on oxygen for two months yet she was too healthy the following Fall to qualify. Well quess what??? In March she got RSV and had to be hospitalized. More tax dollars were spent on her 4 day hospitalization than it would have been for the synagis.I can't figure it out!!
  • RSV
    Hello, I'm new to this, just registered tonight. My 32 weeker was also denied the synagis shot and he's had a cold for over three weeks now. I took him to the doctor today and was told he didn't have an infection, thank God. Does anyone know about the rsv test you can ask for at the doctor's office? My doctor told me to appeal the denial because the insurance companies tend to listen to the patient over the doctor.
  • RSV Shot, We finally got it
    The Dr's office's told us the same thing...Alexa, who just turned 1 in November was turned down for the shot also, also a twin, we lost her twin sister at 10 days old...the Dr's appealed on her behalf because we do have school age children in our home, and they bring home everything from school....the doc's appealed, 3 days later the insurance company approved her for her shot. You can call her Dr. for an appeal...Alexa has also had no illnesses since her discharge from the NICU, she has been doing great. You can also call the makers of synagis and appeal to them , because the cost per shot is around 1500.00, and they do listen!
  • Healthy 32 weeker twins no 2nd round
    My daughters just turend one and we have Tri Care the Military insurance. The dr says they dont qualify but they have had 3 colds and a virus. I just found out the hard way one of my twins has a cinniamin allergy.I asked 4 drs at the health center and all 4 said the only way for them to qualify this year they would have to have serious heart or lung disease.
  • Healthy with no 2nd round
    I too have a surviving twin who started out at 1 lb. 4 oz. She was in the NICU for 2 1/2 months with most of that time requiring a ventilator. She left the hospital in early Sept. and began her Synagis in October. She had the shots until April, but has not received any since. She has not had any problems either. We are still very careful about washing her hands often, as well as ours especially during those "germy" seasons which I think has helped tremendously. From what I understand, many kids have RSV, but it's recognized as a cold if they are healthy enough to fight it off. I feel like my daughter has been healthy enough to fight off the minor things that have come her way, and hopefully your son will too. You said in your original message that you were looking for happy endings to not receiving the 2nd round. Hope this helps.
  • Some Doctors are MORONS! I fought and I won!
    Hi, Wish I could give the name of a certain moron Doc here in town. My 25 weeker did not qualify for the 2nd time around for her RSV shots according to her previous pediatrician. He actually told me off when I kept insisting that he give me the referral for her Synagis to submit to her insurance. He told me to get another doctor! I did and her new lovely ped. immediately got her shots taken care of last week! Keep trying even if you have to piss some people off. Your child needs to get shots this second season due to his gestation age just like my Gwen. Good luck!
  • synagis
  • Re: To Julie31
    I'm so happy for you! I know, only a POP would get "wanting" to have shots. I know it is tough to go every month but I'm sure it will help and will certainly ease your mind. Here's to a healthy winter!!
  • To Julie31
    Hi Julie,

    So nice of you to check on me! We actually WERE approved for the synagis and I cried when I opened the letter from the insurance company saying we were approved. Our pediatrician suggested we go see a pulmonologist because they can some times get the insurance to budge when noone else can. So we did and 3 weeks later he was approved. I was so excited. That is something only a POP would get LOL.....Anyway, I am so thankful that we were approved, I have never wanted my son to get a shot so much in my life! I know he hates it, but hopefully someday he will understand. Thanks for asking!!!

  • How's it going?
    I hope you are all well. I assume you were not able to get the shots approve since you posted. Just wanted to offer some encouragement - my 31 weeker did not qualify for a second year of shots for the same reason and we were very fortunate. He made it thru his second winter with only a few colds and an ear infection but thankfully nothing serious. I wish the same for you!
  • my 28 weeker came home with nothing in January 2005. And she has not been sick a day will she has been home. my insurance company did not want to pay for her synagis my dr office got very made and when around and around with them until the were will to pay for it. Have you though about getting a new dr?
    I asked my doctor about an RSV shots for my 8 month old actual 6 mos corrected and was also told that the insurance company may deny it because he is relatively healthy and he weighs 21 lbs.They told me I could get him a flu shot so I am hoping and praying that the flu shot will be enough to keep him from being sick.the doctors office told me that they would file the paperwork and see what happens.My baby also came home without any machines ;Hes only problem was learning to eat which he has obviously figured out.Good luck .