A (really) tough decision

As parents we have a lot of tough decisions.  Many times, we aren’t even 100% sure what we decide is the right thing to do but we go with what makes the most sense to us when faced with a “this or that” decision.

Today was one of those tough days for me… well actually it’s been a tough couple of weeks.

It started when a letter came home from school in my son’s backpack from the health department, letting us know that our son was overdue for a vaccination.  It had the scary if no records are received by such and such a date, a suspension notice will follow. 

For many of you, I’m sure this would simply mean making an appointment and getting caught up with the shot.  Actually, many probably would have never received the letter in the first place as you probably did it at the time you were supposed to (recommended age 4-6 for this particular shot).  However, for me this decision is a lot more difficult.  I sat at my computer re-reading things I have read 100 times, going through my emotional wounds that I thought were old and healing, only to find out that they felt just as fresh as they did 7 years ago.  I sobbed, I reached out to family and friends to help me talk through it.  I emailed my doctor with a list of questions and thoughts.

Without going into a (very) long story, I will give a quick explanation (well as quick as I can, it’s still a lot of details).  When my son was 2 months old, we took him for the standard routine vaccinations.  To tell you the truth, I didn’t read anything, I didn’t research.  I trusted my doctor was telling me to do the right thing and I did it.  Was my doctor wrong?  I don’t think he was.  He was going on information that was given to him, instructions from above him and of course, our government.  Was I wrong?  Although I feel I was, I was putting my trust in science, something I have had 100% trust in for as far back as I could remember.

Hours after his vaccine, my son began to act strange.  He looked very uncomfortable, his eyes were bulging from his head and he wouldn’t eat.  Then, he had a seizure (at the time we didn’t know what it was and thought he had just passed out).  We rushed him to the clinic but were treated like typical “first time parents”.  Eyes rolled at us several times.  We were sent home with nothing more than a “this is normal” and although every part of me felt it wasn’t, I believed them.

For the next few days, he continued much the same.  Wouldn’t eat, his sleeping habits changed and he was genuinely in a lot of discomfort.  Then he had another seizure – except this time he didn’t wake back up immediately.  He stopped breathing, 9-1-1 had to be called and he had to be resuscitated in the ambulance by paramedics.  He was transferred to the neuro-surgery unit at the childrens hospital where every test known to man was performed.  Uncomfortable tests that involved pinning him down, holding his eyes open, needles and tubes.  I was in the room for all of them, often times helping them hold him down, watching my baby go through unimaginable pain with no answers and no light at the end of the tunnel.  I was told terms such as “blind” and “severe brain damage”.  It was by far the most frightening time of my entire life.

There are so many more details but what I will say now is that he pulled through 100% and today is a 7 1/2 year old normal, active, smarty-pants kid who is not blind and does not have any brain damage.  Many diagnoses were on the table but officially, the records now indicate “vaccine injury”.  I am thankful for every single day with him, even the ones where he drives me insane.  I have my child here with me, something that many other parents with the same diagnoses are not able to say.

However, that experience changed me.  Everything I trusted went out the window.  Finding out that a vaccine that was recommended to me by my doctor and my government was the cause.  Meeting other families who have gone through the same thing and realizing just how common this was.  Then finding out that the same vaccine had been pulled from the shelf in other countries for the same issues yet our country was still allowing it to be given.  I became angry.  I became skeptical.  I spent countless hours researching, reading and learning.  I helped other families going through the same thing by sharing my research and the results of our tests and medical reports.  In some ways, some good did come out of this, but I would not wish this experience on my worst enemy.

So when the letter came, all those feelings and memories flooded back.  I was a complete mess.  My husband was out of town on business which didn’t help as he is always the one to calm me down and help me work through my thoughts and feelings.  Luckily our family doctor is amazing and within an hour of me emailing her, she responded answering all my questions and taking into account everything we’ve been through.  She helped me sort everything out into two simple decisions – do we move forward with this vaccine or not?  Either way, she was supporting our decision.

Let me be clear, I am not anti-vaccine.  

I do believe they do a lot of good in the world and I do believe that some are quite necessary.  I do know that each one carries risk and that most of us choose to vaccinate because the risk is often greater without the vaccine than with it.  It’s a personal choice and I have never judged my friends and family who still chose to give their kids the vaccines on my “not a chance in hell” list.  That’s my list.  It’s a list of vaccines that I have carefully researched and have made my own decisions about.

My kids have been vaccinated to an extent, but not in the same way as yours.  After what happened to my son, we switched family doctors to someone who was willing to listen and work WITH us instead of just telling us our son’s situation was a “fluke”.  She took the time to read everything I gave her, give us her opinions, tell us what was truth and what wasn’t.  She even explained to us why doctors must recommend vaccines and what would happen if they didn’t.

With her help, we came up with a modified vaccine schedule.  It’s pretty detailed but the basics are simple.

  • Delay all vaccines until 12 months of age (unless we had plans to travel to another country or worked in public places where us or our kids were exposed to a lot of people or were putting the kids in daycare before age 12 months – none of which really applied to us but I like to mention as I still feel this schedule wouldn’t be suitable for those who it does apply to).
  • Vaccines are not to be given at the same time as another vaccine, with a minimum of 30 days between shots.
  • No “convenience” vaccines – sorry if that term offends anyone but it is my belief that a vaccine such as the chicken pox vaccine is more of a convenience to parents who don’t want to take time off work than a necessary vaccine to protect against a deadly illness.  Obviously when you are dealing with a family history of problems with that illness, low immune system or other medical/personal issues, then that’s different…
  • No vaccination within 30 days of an illness such as a cold, flu, ear infection, etc.
  • No vaccines within 90 days of a known or suspected internal injury (a hard hit to the head, bone fractures/breaks, etc)

Yes, this may seem extreme for you.  Not to me.  To be honest, I actually wish that I didn’t believe in vaccines at all.  Then I could just fill out the paperwork and be done with it.  However, when you do believe they can do good but have been through what I have, it’s a wheel of never really feeling like you are doing the right thing.  Never being 100% sure of anything.  It sucks.

So back to why I started this post in the first place.  When my son was starting school, we had the required vaccine list to provide to them.  Due to my rule about not mixing two different vaccines, we had to delay the MMR.  For how long was up to me.  He had a successful 1st dose when he was younger with no complications.  Being that he’s a typical boy, I felt like we were always within 90 days of a potential internal injury so I kept putting it off.

When I talked to my doctor, my biggest question was whether or not the 2nd dose was actually needed.  She explained that the first dose brings you to about 95% protection with no real knowledge of “for how long”.  The 2nd dose brings you up to 99% protection with a clear long-term protection rate.  Measles, mumps & rubella aren’t really anything we still hear about often.  Still, we love to travel and have plans to travel a lot as the kids grow older.  This was definitely in the back of my mind.  She told me we could delay even making a decision right now as his protection levels are still very high and he’s not in a high-risk group.  I could fill out the paperwork for the school to avoid suspension as you can use philosophical reasons to explain why you aren’t doing it.  The doctor then asked me something that stuck with me.  Would I feel any more sure in a year, 5 years, 10 years?  I thought about it and realized the answer is no.  The fact that 7 years later, these feelings and memories are so fresh and raw makes me realize that they will never change.  I will always be skeptical.  I will always wonder “what if” in both situations.  Making a decision now or later wouldn’t change anything.

860796_10151478749470170_1234594145_oToday my son had his MMR vaccine.  It hurt, he cried for a moment and then he was fine.  I had a lump in my throat the size of an apple. I’m not fine. I’m worried.  I’m watching him like a hawk (while writing this I’ve already checked him sleeping in his bed twice, each time going as far as putting my hand under his nose to make sure he was still breathing).  I’m still not 100% sure I made the right choice.  I don’t know what the right choice is.  If something happens, I will feel guilty.  This time, I wasn’t following anyone’s orders or recommendations so I can’t even partially say that I didn’t know any better.  That’s what makes it so hard – knowing that if something does happen, I am responsible.  But those same thoughts would be in my head if I didn’t do it and he contracted one of those illnesses.

I know I am going to go through the same thought process with every single medication, vaccine or chemical I expose my kids to.  It’s a tough decision, for any parent really.  A bit tougher when you’ve been through the realization that your decision was wrong.  I know I can’t beat myself up about it.  All I can really do is work my butt off to be a great mom to these kids, and know that every decision I make came with the most thought and consideration that I could have possibly made.

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6 thoughts on “A (really) tough decision

  1. Wow still such a crazy story to hear! The vaccination route has been a tough one for us as well! Our old pedeatrician went as far as to give Cash the Flu Shot/Chicken Pox shots without telling me even though I’d already asked him not to. I don’t believe in convenience shots either, especially on developing systems.

    I like you, have a researched bias but without that crazy experience to boot. I can only imagine how tough it is going through this now. Poor guy! Poor mama!

  2. wow this post really opened my eyes. I have always been on the fence about certain shots and not liking them as a child my mom never pushed me to get shots she didn’t think were necessary when I was in school. I will be sure to do my research before my child goes for any shots. I have even been researching what blood tests I’m being sent fir while pregnant and opted not to have one done as I didn’t think it was necessary. I’m sorry you had to go through this but I’m happy you shared your experience.

  3. What an unimaginable experience you had with your son. Good for you for taking the necessary steps in finding a doctor that will work with you. We would have done the same. Glad to hear that your son is a trooper.

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