Tuesday, December 9, 2014

The Great Vaccine Debate

As an autism parent, you are either pro- or anti-vaccinations. There's no middle ground. There just isn't. Either you believe the MMR vaccine caused your child's autism or you think those who believe that are crazy. As autism parents, we have enough on our plates without worrying who's going to open the flood gates and start WWIII over vaccines.

But here's the truth: y'all are equally crazy.

When I was a few weeks old, after a severe bout of jaundice left me "untouchable" and in a box for three days, I developed a bout of pertussis, more commonly known as whooping cough. I almost died. Now, more than 20 years later, most mothers and babies are vaccinated for whooping cough, saving roughly 200,000 children each year.

However, with the anti-vaccination movement gaining momentum, more and more cases of vaccine preventable illnesses are cropping up. It begs the question, if vaccines cause autism, and more and more people are refusing vaccinations, how come the autism rate is still increasing? Shouldn't it be going down, or at least stabilizing?

The answer is, neither group is correct.

The debate doesn't have to be black and white. If parents would put aside their guilt and their god complexes, we could all get along nicely and support each other like we should.

In Caiden's case, his autism wasnt caused by a vaccine. He was delayed before he received his MMR vaccine and regressed six months after he received any vaccine at all. We never noticed any problems with him around the time he got any of his vaccinations.

However, he's just one child. This doesn't mean another child didn't have adverse effects to their vaccines just because mine didn't. People are different. They react differently to everything around them. Some people can't handle dairy, some its nuts, or gluten, or penicillin, or codine.
Pick your poison.

With anything we take into our bodies, we run the chance of having an adverse reaction to it. Some do, some don't. This can be why we often see identical twins, one with autism, and one without. Or one with an allergy, one without.

If the pro-vaxer could say to the anti-vaxer, and the anti-vaxer to the pro-vaxer, "I'm sorry your child developed autism," instead of fighting over the "why" we could do more to help each other.

There is absolutely no need to force your opinions down someone else's throat. You CAN have a civilized discussion without fighting, and not one side has to be 100% correct.

Yes, the why is important, but there's no sense in fighting over it. As autism parents, we have a hell of a lot more to worry about than something we can't change. None of our personal opinions on the matter are going to help find the answer.

Now here's my opinion because you're reading this and I'm choosing to share it with you

Autism doesn't have to be a result of just one thing. The final answer, the "why" doesn't have to be just one thing. You don't have to pick between vaccine's causing it or genetics causing it. You don't have to pick pollutants or GMOs causing it. It could be a combination of many. The key thing is, we don't know yet, but at least we can be thankful that it's being worked on.

In the end, you have to make a decision though. As a special needs parent, and someone who almost died of a vaccine preventable illness, autism isn't the worst thing that can happen to your child. Sure it isn't what any parent wants for their kid, and it's a fucking difficult path to walk, but the end of the day, having an autistic kid is better than having a dead one [from a preventable illness].

Thursday, December 4, 2014

Another Specialist

Monday we drove four hours round trip to see a diagnostician (prerequisite to seeing a geneticist as they don't have enough appointment slots). What I expected to be an hour long appointment turned into four!

The doctor we saw was AWESOME. She took a very, very extensive history and even knew what HELLP was! Considering its a rather rare condition (and not part of her specialty), her knowledge of it speaks volumes. We got a LOT of information, so bear with me here!

She started with a typical physical, he's 34.5lbs! And still has a big head at 53cm, up 1cm from June. Then had him walk around the room. He has wobbly knees. Basically, he doesn't have the balance or the strength to hold himself up which causes him to fall a lot. He compensates by walking funny. He walks with his feet pointed out and his knees slightly inward. It needs to be corrected at some point, but if he hadn't altered his gait, he wouldn't be walking at all.

There is some concern about his heart. Caiden's heart rate and blood pressure were high and with a family history of hypertension, she wants our regular pedi to monitor it. Also, one side of his chest is slightly sunken in. She doesn't know of its muscle related or skeletal, so Caiden needs an EKG, heart echo and chest x-ray.

She noted along with his huge head, he has a very prominent upper lip, and droopy eyes (made more noticeable by the fact that he was exhausted yesterday), and thinks we may be on the right track with suspecting fragile x.

Good news is, while we didn't get to meet with the geneticist, she was able to consult with him/her while we were in the office and get his/her recommendations on additional tests. The diagnostician was able to provide enough medical evidence to prove the necessity of the tests and insurance approved it! We were able to have the labs drawn while we were there which should cut down our wait time.

Aside from the fragile x and microarray labs, Caiden had four others drawn:
• repeat CPK to compare to the previous two
• hypotonia panel to check for conditions such as muscular dystrophy and spinal muscular atrophy and other conditions that can cause hypotonia
• PTEN panel to check for very specific conditions related to the PTEN gene. They can be responsible for various cancers, tumors, heart and muscular conditions
• An aldolase test, very similar to CPK, measures an enzyme also related to muscles. If its high it'll let us know to check for muscle damage, heart damage, cancers like leukemia and pancreatic, muscular dystrophy, and rare genetic conditions related to the skeletal muscles

Our neuro has decided we only need to go back if the CPK and/or aldolase tests come back high (we'll need to discuss a muscle biopsy because of the added heart concern), or the genetics come back with something. If we see Caiden regress again he wants us back in immediately and we'll discuss his brain issue again, but we shouldn't need to see him regularly anymore.

Our pediatrician is sending us straight to a cardiologist to do the tests concerning his heart, so we're adding another specialist there.

So, if you followed all that, here's a list of Caiden's diagnoses to date:

1- Autism (ICD-299.00)
2- Hypotonia/ataxia (ICD-781.3)
3- MTHFR (ICD-270.4)
4- Tachycardia (ICD-785.0)
5- Cerebral Microcephaly/Global Cerebral Atrophy (ICD-742.1)
6- Developmental Delay (ICD-783.4)
7- Deformity of Chest and Rib (ICD-783.3)
8- Congenital Abnormalities of skull and Face Bones/Macrocephaly [his giant head] (ICD-756.0)
9- Congenital Abnormalities of Face and Neck [facial features] (ICD-744.89)

Fuck You Holland; The Diagnostic Process

If you follow our Facebook page, and if you're reading this, you probably do, then you likely have an idea of where I'm going with this post just based off the title. Yes, I'm tackling the hellish process that starts with the initial concern to the final diagnosis. We haven't gotten to the end of the journey yet, but I have a pretty good idea of where its headed.

There's a poem or short story entitled "Welcome to Holland" that keeps making its way back to me. If you've had a preemie or something unexpected happen, you've likely read it too. It compares an unexpected event to boarding a plane to a vacation in one country, only to end up in Holland instead. Sure its not where you thought you were going, but you can enjoy Holland anyways.

I hate that story.

The important thing its missing is that while the destinations are totally different (what you expected and what you ended up with) and can be great, the author fails to mention that the trip to Holland is full of turbulence and the plane is lacking seat belts and sick bags.

I like to think the ridiculously lengthy process is like a car ride instead- mainly because planes don't really fit the metaphor I'm going for here. But its no ordinary car ride. Its like getting in and knowing you're going to be in an accident (because no one wants to invision a plane crash). You don't know when it'll happen, where it'll happen, or how badly you and your fellow passengers will be injured, you just know its going to end badly.

When we first strarted noticing something was a little off with Caiden, we prepared. We went over all the maps we could lay our hands on, buckled our seat belts and obeyed the speed limits. And yet, we still managed to hit all the potholes, miss turns, and sit through green lights. When we finally got to the diagnosis, we crashed into it and walked away with a case of whiplash.

After Monday's appointment with the diagnostician (read the full update here), I feel like we're back in that car, barreling down the road with our eyes closed bumping into everything in our path. Were going to crash into the test results, and this time we might not walk away from it.

I'm quite honestly petrified of what his labs will tell us. I'm also scared they won't be able to tell us anything and we'll be back to where we started only having to try again. We can handle autism. I don't know if we can handle some of the other things they're testing for.

I thought that getting Caiden's ASD diagnosis would be the worst part of this whole process (remember its taken is a year to get to this point), but while the diagnosis part definitely sucks - as important as having answers are, its definitely the waiting. By the time we got his official diagnosis, we already knew that's what it was and were actively addressing the issue. The wait had given us enough time to confirm our own ideas and get the ball rolling on managing it.

This time, we don't have that luxury. We're left with no leads, no good ideas, nothing to fill up our spare time and no direction to head in. The stress seeps into your bones and everyday its there reminding you, one of these days, they're going to call, and you're going to crash.

But like an idiot, you keep getting back into that damn car, because if you don't, you'll never know where the road finally ends and what the diagnosis is. Its not strength that gets you through the day or causes your knuckles to turn white as you grip the wheel, because really, you do what you have to as a parent no matter what. If it were your child, you wouldn't give up either.

What keeps you going is the chance that maybe you won't crash when you stop. Maybe the answers won't be as bad as you fear. Its the hope that maybe it'll be okay and the constant pain in your heart will eventually subside.

Because when it's your kid, you don the armor and go to war, even when you're already broken.