Tuesday, May 17, 2011

This Is As Controversial As I'll Get

I just have to get this off my chest and I am wondering how many of you out there feel the same as I do.

Clearly the vaccine issue has been at the heart of the what-causes-autism debate for quite a few years now.  When friends (and strangers) ask my take on whether or not vaccines cause autism, my answer has remained the same since before M was officially diagnosed.  That answer is that M showed signs of developmental delay from very early on, so in OUR case, I do not believe vaccinations were the sole cause of his autism.  However, I do wish that I had spread them out those first years rather than following the recommended plan because I do believe they very well could have damaged his immune system (and thus his neurological system) along the way.  M clearly has immune system deficiencies, and I think moderation is key for every single thing I put in his body especially when it comes to toxins.  The fact that he's likely had the herpes virus actively wreaking havoc on his system for years with the inability to shed it naturally is proof enough for me that my particular child has difficulty when it comes to processing foreign viruses and bacteria.  And please note that even though we have tried biomedical intervention, I am not nor have I ever been one to go singing its praise from the mountaintops in hopes that every other family with autism will also go down that path.  In fact, I have always been very honest with others who ask in saying that we have actually not seen any results from biomedical intervention, but that some of the supplementing does resonate with me because of the previously mentioned immune issues as well as lab results that have shown clear deficiencies in several areas.  I mention biomed here because of the point I'm about to get to...and the fact that naysayers seem to think those who believe vaxing causes autism are also quacks who shell out boatloads of money on biomedical interventions.

So to my point...I am sick and freaking tired of feeling the divide that has clearly made its way into the autism parent community.  I am not a person who cares to or thinks that I even can get into an intelligent debate with those who have made it their mission to memorize every statistic or study Paul Offit and others are involved in.    I am not interested in continuing to vilify Dr Andrew Wakefield or other scientists who believe vaccinations *may* have caused autistic enterocolitis (since that was Dr. Wakefield's claim, folks) or that they may damage some children.  Frankly, I barely have enough energy to remember to punctuate the sentences within this blog post as my four-year-old screams the phrase 'poop in your underpants!' at the top of his lungs over and over.

What I do know, though, is that I have some very dear friends that I have met along the way of this autism journey and they believe that vaccinations were directly involved in the decline of their children into autism.  I have listened to their heartfelt stories of typical development turning to seizures after a vaccination and thus a withdrawal from the rest of the world.  I have heard about gut biopsies revealing crazy-ass viruses present in their children's system. And I believe them...because they are parents on a blind journey just like me wondering how this could have happened to their child and why it is happening to so many others around them.

I have stopped reading the blogs of some very outspoken proponents of the people-who-think-vaccines-cause-autism-are-stupid camp.  Though these people may be bright and well educated, I no longer have patience to tolerate their penchant for talking down to those who believe differently.  If you can speak calmly and kindly about your opinions, that is one thing.  When it becomes clear that you think everyone who doesn't agree with you and 'science' is a fucking idiot, I'm out the door.

Stepping down now...

Tuesday, May 10, 2011

Blistless In California

Blistless or B-listless

When a Blogger becomes listless or apathetic about posting. It is also indicative of what will happen to the Blogger's mailing list.

Yes, it would appear that this affliction has struck Mama Deb.  And my apologies, as the definition tells me that I have now likely passed on said affliction to you poor followers.  It's been slowly making its way into my life over the past year, but has really taken hold over the past couple of months.  I'm fairly certain my desire to not sound like a pathetic, skeptical, pessimistic, overly dramatic, loon may have a thing or two to do with it. (Though the ounce of optimistic, rational calm I have left keeps telling my other self that I'm strong enough, good enough, and doggone it, people like me!)  

I had good intentions of telling you just how fabulous our recent trip to Hawaii was and then it all sort of went to shit starting the night we got home and I was wallowing in my own sorrows too much to tell you something that might make you think I had been happy for Six.Whole.Days.  You know, cuz I got a rep to protect.

So I'll start with the crap and then end it on the high notes of our trip.  Sound good?  

We got home on a Thursday night around 11 pm.  Naturally we were all sorts of screwed up on our body clocks, so it was tough to wind down and go to bed.  B went with very little fight, but M started having this awful indigestion/burping the second we walked through our front door.  Interestingly, this indigestion had started a couple of weeks prior, but had magically disappeared during our vacation.  But we'll speculate more on that later...
I, being *slightly* anal retentive, was happy to stay up until 2 am unpacking and attempting to settle back into our home so that I would have less crap to look at when I awoke the next day.  Staying up would prove to not be in my favor as M started to get really uncomfortable within minutes of my head finally hitting my pillow and succumbing to sleep.  It finally became so bad for him that he was yelling and whining and I was worried that he would wake B up and then we'd really have ourselves some nighttime fun.  So I ended up transferring B into bed with the other half (who slept soundly through all of this, bless him)  and I took B's bed in the same room as M's.  M was up until 6 am burping and farting.  I had finally come to some sense and around 5 am gave him a pepcid ac, the only gas fighting medicine we had at the time.  (which is odd because, well, we have a lot of gas around our house, folks!)
So when we awoke at 10 am the next day, I was all sorts of out of whack.  That night was fine--not too much on the gas front--but Saturday, oh-dear-God, SATURDAY, it was so not good.  The poor kid was clearly uncomfortable for much of the day and by that night he was pacing and screaming in pain.  I'm talking the kind of screaming that could make a neighbor call the police and CPS on a family.  It was terrible to see him like that and to not know what in the heck was causing it or what to do.  And, you see, the thing about having a non-verbal autistic child is that you worry you are either a.) overreacting to every outburst or scream or, b.) not reacting enough.  This is what happened to the other half and I that night.  After M had paced for hours and the clock had reached 1 a.m., I (following previously mentioned option 'a') packed he and I a bag and got myself dressed in order to take him to the ER. The other half, however, (following option 'b') told me that I was 'a' and that the ER wouldn't be able to do anything to help him.  I finally relented, hit the kid up with some more pepcid,, and we all fell into a restless sleep around 2:30 a.m.  I'm going to fast-forward a bit to save you some more wordiness about discomfort, burping, and farting, so we'll skip ahead to Tuesday, a full three days after the peak of the indigestion.  By this point, the other half had been gone for 24 hours on a business trip and I could no longer watch M in such a state.  I took him to his doctor (after dropping B off at a friend's and packing yet another bag for a presumed trip to the ER) She agreed that I needed to bring him to the hospital for further testing.  Six hours later, we left after x-rays, an IV, a slew of blood tests, a catheter, and a 'high' enema.  (no, not just a 'low' enema, thank you very much)  The poor kid was so backed up that that day even his bladder had ended up blocked and took an entire hour to drain via catheter despite not having peed since about 11 hours earlier.  I'd like to note here that I am not a *complete* idiot and did realize that my child may have had some constipation issues.  However, I had been trying to manage them and he was going a slight bit ever couple of days.  If he hadn't gone at all for days I would have been more concerned about that than I was.  Lesson learned.
Now here's the kicker, though:  Two mornings later I awoke to find a voicemail on my phone that had been left the previous night at 12:30, while I slept.  The message was from an ER nurse who said that they were sorry to alarm me, however, one of M's lab cultures had just come back showing bacteria in his blood and they really needed me to bring him in for reevaluation.  AGH!  I spoke to the nurse who mentioned the word 'staph,' and away we went again to the ER for another seven hour visit.  It would turn out that we were one of the unlucky patients who had their lab sample contaminated by the naturally occurring staph flora we all have on the surface of our skin.  BUT, because he had started limping and they were worried it could be sepsis in his joint, they did a pelvic and hip x-ray while we were there that lead them to find a wicked crazy amount of gas still in his gut that they then gave him two hours worth of IV fluids and some zofran to treat.  Geez.  
On top of this (and because you, no doubt, are enraptured by my tale of my child's gas, poo and other bodily goings-on) we discovered that he has a condition called hyperphosphatemia.  Our doctor had asked that they test for this since M has also been hypocalcemic for years. (a thing that has just recently started to really concern me)  So it would seem that these two out-of-whack tests combined point to a possible parathyroid dysfunction which we will now see an endocrinologist for in a couple of months.  (Because that's how freaking long it takes to get into children's specialists, for those of y'all who aren't lucky enough to have to try to book these appointments)  We will also revisit the genetics department since it's been two years since we last did that and the ER doctor feels we need to continue to look into possible metabolic disorders for which testing may now be available.  (fingers crossed, though, that we don't find anything there...metabolic disorders can be s-c-a-r-y)

PHEW!  Are you still there?  Do I need to buy you a drink for still reading all this?  (Because I will, you know)

So instead of making my fingers ache anymore from typing, or make your eyes strain anymore from reading, I will leave you with some cheery photos from our lovely trip to Hawaii where both boys were incredible champs BOTH legs of the flight, and where having my mother-in-law there to help us proved to be the best decision we could have made!  I'm already ready to go back!