Since I did my last post on the swine flu vaccine and kids with special needs, it's been on my mind all the time. Or, at least when I have time to actually think.
Last week, I asked our pediatrician whether he thought Max should get the vaccine. He left me a voicemail at work: "Yes, Max should get the swine flu vaccine, he's in the high-risk category."
Yesterday, I had a conversation with Max's neurologist. He explained that although having cerebral palsy puts Max in the high-risk category, that risk is mainly for anyone with cp who has breathing issues or compromised respiration—neither of which Max has. He acknowledged it was a tough choice, but said that he thinks the vaccine is too untested. And he said he wouldn't do it. Not for Sabrina, either. Or me or Dave. He did say I should tell Max's teachers that if anyone in his class gets it, they should let me know so I can keep him home.
I've been reading up on the swine flu vaccine debacle back in the '70s; cases of Guillain-Barre syndrome, a paralyzing nerve disease, were linked to it; Time had a good piece on it. I also read that The Obama administration is legally protecting anyone who distributes, prescribes or administers the H1N1 vaccine in an article by The Canadian Press (who's decided to shield drug companies from lawsuits).
As of tonight, I am leaning toward not getting Max the swine flu vaccine. And I am scared.
Photo by Feeling Croppy
I don't know if this is helpful, but after someone with AS had the swine flu and was very ill (intensive care) a geneticist knowledgable in AS pointed out increased risk is more likely in those who already are prone to respiritory problems and those who were immobile.
ReplyDeleteI guess you know that often people with decreased mobility have a higher risk of respititory problems. A number of other children with AS have also had the swine flu but with no complications.
Hm, I'm still unsure what to do.
Unfortunately, we are in the high risk category with Chronic Lung Disease...oh how I wish we weren't. :(
ReplyDeleteI hope that it wasn't presumptuous but I sent you the email that we received regarding the vaccine from our pediatrician. I think it's terrific that you are an informed parent, and it's only natural to be nervous about decisions made that affect our children.
ReplyDeleteYes I agree...the past vaccines for swine flu have had more probs than the actual flu itself from what I have read and seen on TV.
ReplyDeleteI am pretty much againist getting Violet immunised too.
This has been on my mind, too, especially with school/close quarters and all the sharing that entails. I think it might be time for renewed lessons in aggressive hand washing and enthusiastic use of hand sanitizer, to say nothing of the "How do we cough? In our ELBOW, that's right!" routine.
ReplyDeleteWhat to do? What to do? What's the right choice? When medical professionals with good resumes can't agree, how is one to make a decent decision?
I heard on the news that health workers in NYC were risking getting fired if they don't get the shot...and some are ready to take the pink slip. What does that tell us?
The first swine flu debacle (and it was one), along with rampant inflation and a real sense of national malaise helped to doom the Ford administration--I was a kid at the time but that's the first election I really remember and I do recall those issues--the vaccine scandal, especially--taking center stage (yes, I am an "oldie" compared to most here). People were afraid back then, too.
There were some serious coughers and sneezers in the restaurant tonight--you have to wonder, is it "regular" flu or is it the oinking variety? Paranoia! Where's my hand gel?
Once again...a brilliant photo illustration for this (worrisome) topic!
I wish I could find a way to check this off my list of things to worry about, but I can't. One thing I heard from the 'flu specialist at a meeting at the government agency where I work: this vaccine is made exactly the way current flu vaccines are all made, thus eliminating the issue that is suspected in Guillain Barre syndrome from the 70's. So if you have faith in the regular one, trust this one. But I don't, totally. Lifting the ban on thimerosol does give me the wiggins - if it wasn't safe last year why is it OK now? I do believe the 'flu vaccine has helped me, and my duaghters are high risk to I think I'll get it because the possible negative outcome is so unthinkable, but I am still very, very worried.
ReplyDeleteI am so confused with all of this. I was against Ashton getting it to begin with. However his doctor said that if he was to get H1N1 he probably would not come home. Kind of makes my decision easy right? Nope...still really hard because I am afraid of this vaccine.
ReplyDeleteMany of the kids who have passed from this virus were special needs. Many did not have resp issues. Just underlying medical issues.
UGH I hate making such big decisions!
Thanks for the info. I do find it interesting that the ped wants you to keep Max home after someone in the class gets it. At that stage of the game he as been exposed.
ReplyDeleteTwo weeks ago my 11-year-old had type-A (assumed to be H1N1). She is the one I was most concerned about due to her health issues. The ped put her on tamaflu (sp?) and the fever was gone in less than 24 hours. It did get up to 103+ which for her is very bad.
Besides hand washing, cleaning of hard surfaces (e.g. school desks) is very important. Many viruses can live 24 hours on them. Sending Clorox wipes to school would be helpful to the teachers.
My kids are healthy, and we're not in a high risk group, so we're taking a wait-and-see approach. We will not be first in line to get the vaccine. That way if there are side effects, we will avoid them.
ReplyDeleteHowever, if some of the larger cities around us (Indy, Chicago, Fort Wayne...) have major outbreaks, or if there's a major outbreak at the university down the street, we'll get it.
I figure that's the most conservative approach. If Swine Flu turns out to be no big thing, we've avoided the vaccine. If it turns out to be a big thing, we can still get it in a few weeks.
I have serious concerns about the squalene and the thimerosal in the vaccine. Of course, I also have serious concerns about h1n1. It's so hard to filter through all the b.s. and figure out what course of action is best. I think it's a decision that each family needs to make based on its own risk factors and health. But that's what we are going to do, for what it's worth.
Im in a similar quandry with that vaccine. i "broke" last year and gave my 13 yr old (she's now 14) the flu shot which ive always been kinda "against" along with the menningitis vaccine... of course she seized that night bc she ALWAYS seizes after a vaccine. im not going to give her, or my infant, the swine flu vaccine. bon bon gazette (www.bonbongazette.com) has a nice write up about the swine flu vaccine and why she wont do it (scroll down, its from a few days ago if you do visit her page)... i dont know. its a tough decision. its not black and white. every kid is diff. a mom should just trust her gut.... just TRUST it and dont worry about what others say :)
ReplyDeleteim really glad i found your blog... its very beautiful.
im not in the SAME situation as you, but i have a multiply disabled teen (she is ambulatory but non-verbal, completely depenedent for all self-care, seizures, autism, scoliosis, thyroid condition, and severe cognitive impairments) so i can relate :)
Sounds to me like you have a very smart neurologist. I think you are wise to take the advice. It is very similar to what we have heard from our specialists. Thanks for sharing!
ReplyDeleteThanks for that post. I had wanted to get the vaccine for my son as he has CP. But now that I read what your neurologist & others say, I'll have to give it more thought & seek the opinion of my son's neurologist. I'm confused but I'd rather be informed and confused.
ReplyDeleteBtw, I do like your blog! Oh, and your post on Max having a sense of humour...well, I've realised that people see my son's physical disabilities & that's all they see. They dont see his abilities let alone how 'normal' he is in other ways (humour included).
I'm going to try and get it, if I can. Although the fresh 6 inch scars on my body are the main reason at this point. When I first heard about kids with CP being high risk my next thought was, "What about me?" I have CP, but I'm not a kid. Where does that leave me? Did they even bother looking into it. The more news that comes out the more nervous I get, but at the same time it doesn't directly apply to me so it just leaves me confused....and a little more than pissed to be honest.
ReplyDeleteI'm so on the fence right now. I'm scared to get it for Bennett and I'm scared not to. I just don't know what to do. The decision may be out of my hands as it seems that the vaccine won't be available here until November and current reports expect the virus to peak in mid-October.
ReplyDeleteI have never vaccinated my daughter against anything...and am even more against it now that she is disabled. Her already compromised body makes it harder for her to clear all the toxins from the vaccines. No good comes of it. I wouldn't be a bit scared if I were you.
ReplyDeleteClaire it is important you get your daughter vaccinated. What will happen if you arent around, she gets polio and dies due to not having the vaccine? Vaccines dont have any toxins.
DeleteA lot of good comes from vaccinating. By not vaccinating, you are exposing her already compromised body to diseases which can kill a child.
I am a chronic lurker and almost never comment -- sorry! But I had to share, my mother is in the health field and has said that two studies have recently come out that show that the H1N1 vaccine can increase a person's suceptibility rather than decrease it. This is one of the reason's behind some health workers refusing to get the vaccine.
ReplyDeleteI love reading your blog, sorry for the lurking!
I also THINK the company responsible for making the N1H1 vaccine had something to do with a tainting debacle. Apparently, they tainted some vaccines with the avaian flu virus (that could get people VERY SICK) a number of years ago. The tainted vaccines were in shipment when they figured it out and told all clinics to ship the stuff back, and nobody was hurt. Sounded negligent to me.
ReplyDeleteHOWEVER!!! I have no idea if this is true or not! Just something I read on the internet and we all know about how truthful the internet is.
Thanks Ellen for some interesting articles. I'm pregnant, have one son with CP, and another son with asthma. Sigh. I still am not sure what to do.
ReplyDeleteWhen my oldest was 2 months old, right before his scheduled vaccination for DPT, he became ill, turned gray, and stopped breathing for a moment. He was hospitalized and quarrantined(sp) with what they thought was Pertussis. It was a terrible experience for a new mom to watch her baby intubated, suctioned, x-rayed and poked and prodded. (This was before I entered the world of CP and realized some mothers go through much more.) Still, the experience was difficult and I told myself that I would immunize my children because the devastating effects of a preventable sickness, to me, far outweighed the potential side effects of a vaccine. I would like to know that I did my part, even if it means trusting in the government, to prevent injury and possibly death to one of my children or some other persons' child.
With that plug for immunizations and societal social contracts but not necessarily on government schedules ;) I still have concerns about the Novel vaccine. I can understand why the government is offering immunity to the vaccine companies. Anything that goes wrong in any person related or unrelated to the vaccine will be blamed on the vaccine. Nathan doesn't have respiratory problem, nor do I but why are they still encouraging people with neuromuscular diseases to be vaccinated. Why not just say anyone with compromised respiratory systems?
Anyway, time to go pick up the kiddos from school. I'm set with the Purell and yesterday, delivered a couple containers of antiseptic wipes to the classrooms.
I'm going to check back later for more on this fascinating topic. :)
I won't be getting the vaccine - and I work in a school. I will, however, be getting the regular flu shot for the first time in my life. My dad works in the health field, and he is not recommending the shot to his patients. We are also not giving the swine flu vaccine to my 2 year old nephew. Too risky. And, as it stands - the swine flu, is simply another strain of the common flu that we deal with each year. Many doctors have told us that the "hype" over the swine flu is more media driven than anything else. For me, the risks outweigh the benefits
ReplyDeleteWhat a smart neurologist...Max and Sabrina will be giving you extra hugs and kisses for not injecting them with the H1N1...it just isn't worth the risk.
ReplyDeleteI think there is a lot of misinformation out there on the swine flu right now. The best thing is to consult with your doctors and—if they disagree, as mine did—go with the doctor you trust more. But I may change my mind—I'm in Amy's camp, I don't want to be first in line, I'm going to wait and see. Meanwhile, I am taking the advice of Janet and Heather and sending the kids to school with sanitizing wipes.
ReplyDeleteOk Ellen, MRS. H1N1 expert. I have asked all of Faith's dr's that we have seen in the last month and they have all recommended it. I am very interested in this anti vaccine opinion! I have been seeing/hearing all kinds of mixed views. I am very scared for Faith either way. This is such a hot topic... boy, I am glad your hear! I just don't know what to do....
ReplyDeleteI am SO glad that somebody finally pointed out the respiratory thing--I suspected that was part of the reason why so neuro-muscular kids were being told to get the vaccine.
ReplyDeleteFor now, I'm against it, but that is mainly to do with Charlie's young age and the fact that the vaccine is supposed to contain thermirasol (I can't spell). For us, mercury is a no-go for the first five year of life.
Have I already mentioned Sambucol? It's an all-natural alternative to Tamiflu that's supposed to seriously reduce symptoms, and of course, there's tamiflu itself which my nurse friend says has kept all the doctors at her hosptial doing well.
Ellen
ReplyDeleteAt this stage we aren't going to get it. Provided you start tamiflu within 48 hours of flu symptoms it works like a charm (doesn't have to be H1N1 - any flu) - quite a few high risk kids (even trache kids) we know got the virus and had tamiflu and while a couple had a few days in hospital - no major issues. Tamiflu is useless if it isn't started quickly. I started on it less than 24 hrs on my flu symptoms and was better in 2 days. They stopped testing for swine flu here in Aust because I think at the end of the day it wasn't much worse than the seasonal flu. The vaccine isnt' available for kids under 10 in Australia in any case so we don't have to worry about it really.
How great that you are so informed on it! I don't think your pediatrician should have been so insistent on him getting the vaccine. My son also has CP and we will not be getting it for him, although he is mildly affected by his CP, I still don't feel comfortable getting him anything with so many toxins in it...as your neuro said, it's too untested. For me, it's hard to put trust in any vaccine that was rushed out the door and the makers are being given immunity to lawsuits from adverse reactions stemming from it.
ReplyDeleteMy daughter Lucy is 20 months old and in the 'high risk group' because she has Cystic Fibrosis. I have always been on edge with ALL vaccines and delay them as much as possible (Not allowing more than 2 vaccines at a time, splitting the "combo" vaccines up into separate shots and denying the polio and Hep B vaccines altogether.)
ReplyDeleteI do get Lucy vaccinated with the mercury-free seasonal flu vaccine at the beginning of the season but my mother's gut instinct tells me that there is something terribly wrong about the H1N1 vaccine. It is just too new on the market and Lucy WILL NOT be getting this vaccine!!