Friday, January 31, 2014

Was it the Vaccines?

This post isn't intended to spark a debate about vaccines.  It's meant to answer the question that's come up now and then since Mae's diagnosis (from our family's experience).

After we received Mae's autism diagnosis we heard the words "so do you think you should've skipped the vaccines?" for the very first time.

My answer then is the same as my answer now: No.  

And to the other question...

Are we having Patrick vaccinated?  Yes.  

I understand why people ask about vaccines and it actually doesn't bother me in the least to be asked this question (so if you've asked, don't feel bad!).  Autism is a frightening diagnosis and when people are frightened of a thing they want to know what they can do to prevent it from "happening" to their family.  And I know that because of certain widespread "studies" that have gone on in the past decade or so, autism and vaccines have become topics that go hand in hand.  

But I am also certain that Mae's autism is not the result of the measles, mumps and rubella vaccine, which so often is supposed to be the one that triggers autism in those sorts of articles (and she was way past the time in which mercury was still in vaccines, so that's not a consideration either).  

You see, we moved to Florida during the summer that Mae turned one.  And we were assigned a doctor by our insurance and we called and called and tried to get an appointment and the office just wouldn't call us back.  So we were assigned another doctor.  And we called and called again without a response.  I was sick after the miscarriage and in and out of the hospital and then on bed rest and the cycle went on and on and Maggie didn't get shots that year.

It wasn't until we got back to California that Mae finally got her vaccines and by then, in retrospect, the behaviors that I would later learn were definitely red flags were already there.  The vaccines that she got before we left California (and after we returned) never caused a reaction of any sort.  She never even had to take Tylenol or Motrin.

No, if you asked me where Mae's different way of looking at the world comes from I would say that my best guess would be that I think it is largely genetic.

And then I think back to a day in the hospital when Mae was two or three days old and one of the on call pediatricians came to check in on us, because we didn't have our own doctor after I fired our family doctor a few days prior to Mae's birth.

There was something wrong, I told the doctor.  She was just too quiet.  Too good.  She sleeps soundly for hours. She was so quiet.  He'd looked at me like I was insane.  I should be thankful.  No, don't wake her up to feed her, let her sleep.

Babies are different, I told myself.  She's just an introvert, I'd say later, when she'd want to spend hours in her room with the door closed.  She just needs space.

So in a way I do feel like Mae's special difference and also her sensory processing issues, have been with us all along, even if they weren't glaringly obvious.

But I also think that there are things that happened that I would do differently, because I do wonder if they played a roll in making her life harder than it needed to be.

If I could go back I'd nix the antibiotics that she was given for ear infections.  In fact, I'm going to be far less ready to jump on the "let's prescribe an antibiotic for that tiny little scratch" bandwagon in the future.

Between seeing Mae's digestive problems and their effect on her behavior, which seem seriously improved with probiotics and all the other digestive aids we've given her, and after having seen the start of Patrick's dairy allergy within seven days of his being given a round of antibiotics at the hospital (for the hair tourniquet on his toe) I'm far less willing to allow them to be the solution to little things.

Don't get me wrong, I'd give antibiotics for something big and I'm grateful that they exist because they are necessary sometimes and they do save lives. But as I've seen gut health so closely linked to the ups and downs in ours days, I'm far less likely to introduce something that will devastate the good bacteria that we're working so hard to bring back around.

I'm more likely now to say, "do we really, really, really need to use this right now?" the next time a prescription for Zithromax is being scribbled on a prescription pad.

Then again that's my non-medical-degree-holding-layperson reaction to seeing how things that affect her stomach affect her behavior and can lead to painful, miserable weeks.  Other parents don't see changes or reactions to the same things we have.  It varies widely for different people.

I don't believe that antibiotics caused her autism.  But if there's one thing I"ve learned, we have to be far more careful about what we let go into Mae's system, because things that don't affect others can have a weeks long impact on her behavior and happiness. In our world a piece of bread almost caused a doctor ordered trip to the ER after eight days of pain and a little butter on hash browns meant two weeks of silence and tears, so it's not a stretch to think that something like antibiotics could mean something totally different in our world, than it does to almost everyone else.

Edited to add: I just wanted to add a quick note to say that this post isn't meant to say that I think it's impossible that kids that have autism could have a reaction to a vaccine.  I mean, with the reactions I've seen to various things that are supposed to be harmless it certainly wouldn't take much imagination to believe that it's possible. This post was born after hearing a "so, do you wish you hadn't vaxed her now?" type of comment and that's pretty much all it is, because I don't believe that vaccines have anything to do with our experience with autism.

16 comments:

  1. Thank you for being so brave. Like you, looking back, I saw things from the first time I held Shelby that were different. Her constant need to breastfeed or have a pacifier, her need to be swaddled even more than babies normally do...she never once looked for our faces or followed us. But what did I know, she was my first. It wasn't until I had my boys that I realized it wasn't normal for a baby to lie under a ceiling fan mesmerized for two whole hours. Or lying on one's stomach should not cause an epic meltdown in a two-week old. I don't know that I would say Shelby's autism is genetic (no one before or since on either side of the family has ever been diagnosed) I believer there was some possible environmental factor I cannot isolate (possible water contamination from the nuclear power plant we live near just after the hurricane she was conceived during? vinyl flooring? my HG? who knows). I've come to a point where it's not about what caused it but how to help her. I don't find what you wrote inflammatory in the least and that really is something because most people, regardless of which side they are on manage to tick people off with.

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  2. I'm not an autism expert or a vaccine expert or any type of expert by any means, but the prevailing theory that makes the most sense (to me) is that autism (and other chronic diseases) are a result of multiple contributing factors that play out differently in different people. I think both genetics and enviromental factors play a role. I do think it's possible that vaccines may be be one player, along with things like antibiotics, mother's diet during pregnancy (ie. if there were any deficiencies), enviromental toxins....and all these different things can interact with a person's genetics. It's extremely hard to pin down one factor with scientific studies if in fact there are multiple factors involved (and there likely are).

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    1. This is a great post and I agree with everything. I feel the same way about over prescribing antibiotics for every little thing. The vaccine thing has been debunked over and over again but it unfortunately has now put the fear into many parents. I will continue to vaccinate all of my children because that's what is best for my family. I agree with Amelia, I think it's a combination of environmental toxins and genetics. My daughter is autistic but for me, there were no signs of her impending diagnosis. It was sudden and it is still hard to accept.

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  3. Theres been studies looking into identical twins of which only one has been diagnosed with autism. While some say genetic those cases seem to indicate epigenomes which are influenced by environment make the difference.

    My youngest was quiet as an infant and my oldest never really demanded to be fed. He just screamed regardless. They are indicators but not always. Sometimes it means something else. Cause neither boy is autistic. Trouble makers sure. ;)

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  4. Oh I do think there are lots of factors but in our family I have specific reasons (that I won't share) that make me strongly believe that in our case genetics plays a huge roll.

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  5. As I was reading along my heart skipped a beat and I must confess that I didn't read much further. In our case it was a perfectly healthy pregnancy. I am a crazy pregnant lady I ate exactly what I should no bad food, no artificial sweeteners, I watched my fish intake and was extremely carful with blood sugar. I even too DHA supplements. Then my son was born and from the second he left my body he was different. No sleep recovery period post birth and he constantly nursed. And like you all he had most of the warning signs long before his MMR INCLUDING the loss of speech. I have noticed a connection between the sleep recovery period post birth and later diagnoses of AS. I strongly feel that it needs to be further studied. I have heard of either long periods of sleep and no sleep. I feel very strongly that in our families case it is genetic. Plus I can't help but feel between GMOs and pollutants in the air that there is some link. Sorry for the long reply. To the families and children who struggle everyday...hugs and prayers.
    Jessica

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  6. Thank you for sharing this, Cam. You are brave! Especially because this is an issue that so many people will either strongly disagree, or add their own opinions, or tell you something you "might not have considered," etc. I'm glad you wrote it. :) You have my admiration and my prayers!

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  7. I have read many autistic parent's accounts (I do not have an autistic child myself, but do have cousin with PDD-NOS, an ASD), and it seems as though parents fall into two main categories. Some, like yourself and my aunt/uncle, noticed 'differences' in their child from birth. My cousin, for example, did not like to be held all that much, and was content to sit in her swing with a bottle propped up. Other parents talk about their child being perfectly normal until the early toddler years. I would not be surprised if in the years to come they actually realize there are two separate disorders, or at least causes. One that is triggered while in the womb, or at least very, very early in life, and one that is triggered during the toddler years. The triggers could be all different, vaccines might cause problems in some, subtle allergies that are causing havoc on behavior (like you are discovering) in others, environmental toxins in others, which is why we can't limit it to a single 'cause', but all of children must have some kind of sensitivity in common, which could be genetic. Like you, there are some family personality traits that might not be exactly 'autistic', but well, could be the basis for some genetic reasoning. Just my (non-doctor) rambling. It is definitely a perplexing disorder, and I pray the medical community is able to determine some concrete answers for parents everywhere very soon.

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  8. I really hope doctors make progress on figuring out what actually does cause autism. It is so devastating not to know why your child has it. But like any other condition or disease, after a certain point all there is to do is try to mitigate or heal it. I understand that.

    I love how you have faced her diagnosis head on, and are trying everything you can to help her. I love that you see changes and improvement. I also know you must be praying for her healing - I know I am. We can never discount God's healing action in someone's life.

    Not to give you false hope, or suggest this can happen to everyone, I wanted to share an article I just read today linked from Spirit Daily about a child who was healed of autism. Here's the link. http://www.cbn.com/700club/features/amazing/MW181_Roman_Scott.aspx

    I think everyone who has a child facing this condition should do everything the medical and therapeutic professionals recommend, and also petition the Lord for healing for their child. We should always have hope, and God can do miraculous things.
    God Bless. ~ Bonnie

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  9. I added a little note up above, but thought I'd add it here too, in case anyone missed it:

    I just wanted to add a quick note to say that this post isn't meant to say that I think it's impossible that kids that have autism could have a reaction to a vaccine. I mean, with the reactions I've seen to various things that are supposed to be harmless it certainly wouldn't take much imagination to believe that it's possible. This post was born after hearing a "so, do you wish you hadn't vaxed her now?" type of comment and that's pretty much all it is, because I don't believe that vaccines have anything to do with our experience with autism.

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  10. The other thing I wanted to add is that I don't think quietness as a baby is necessarily a sign of autism, but in our case I think it was. I'm sure there are tons of quiet, easy babies that aren't autistic. In our case though, I think it was probably symptomatic of her SPD (sensory processing disorder) in that she doesn't feel things quite like we do most of the time.

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  11. Thank you for sharing your story with us.

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  12. The idea that autism can be cured - that somehow there is a "normal" child stuck inside a broken (autistic) body and mind and if only we knew how to set it free, really bothers me. People are different. We should always help our kids to communicate better, be better people, be healthier. But there is no cure for autism just like there is no cure for Down Syndrome or low intelligence. It's just a part of who some people ARE. Yes, we need to support our kids and guide them into happier, healthier lives. But we cannot and should not attempt to "cure" them because autism is not a disease. There is no "normal child" waiting to be releashed.

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  13. Hi Anonymous,

    I hope your not getting that feeling from my blog or any of my posts, because I totally agree with you. I'm all for supplementing with vitamins and doing that sort of things because they have seriously improved Maggie's health and quality of life (and happiness), but I very, very much know that it is part of who she is.

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  14. I think Anonymous might have gotten the idea about Autism being "cured" from my comment about healing. I am very clumsy with words regarding Autism because I am not very familiar with the condition. Certainly there is a part of autism that affects ability to function, and in some cases requires much more care and attendance of the person than a child without Autism of the same age. So my hope and prayers for "healing" only are a hope and prayer for increased functionality, ability for self care and independence as Mae grows older, as would be expected of children without Autism. I'm sorry if my clumsy choice of words implied a sense of being damaged or broken. That's not what I meant.
    God Bless. ~ Bonnie

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  15. Bonnie, I love your comments! And I definitely think there's a place for discussing healing just because, it Mae's digestive problems were miraculously gone her life would be so much easier. I would love to be able to see her be able to enjoy an ice cream cone and still be able to speak and communicate (and not be in pain) for the following two weeks. So I don't think prayers for healing are without a place.

    I hope you're having a good weekend!

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I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!