Wednesday, June 20, 2012

What should be, and what is...

This week, Billy spent three days in hospital having a long EEG. The purpose of the EEG was to ascertain whether he was having epileptic seizures.

The good news is that the answer is probably no. We like this news, a lot.

He has, like many autistic people (according to his neurologist), constant epileptic activity in his frontal lobe. This (according to his neurologist) accounts, generally, for his kind of autism.

He told us this on Day Two of the EEG, when he came in to see Billy. He had some theories about the biological etiologies of autism, which were interesting to talk about and gave us some hope that he had his head screwed on somewhere close to his spine. This was some new information to chew over, and some hope that we were guided by someone who might be living in a world that was fully cognisant of the subtleties of autism.

We stayed for another day in the hope of catching an actual seizure (it amazes me that they rely on parents and the kids themselves to say what a seizure is, and mark it on the EEG recordings... I have no idea what a seizure is, I just know my kid is doing new stuff since he woke up shaking in January. But I digress.

Over the second day, I marked a few times I thought (and Billy thought) he was having what he calls 'the funny feeling'. Then the neurologist came back.

Here's a summary of our final conversation, before Billy left the hospital. 

 - The EEG saved Billy from being automatically medicated (something we would have questioned thoroughly) because what I thought was a seizure, is not.

 - The  seizure he had in January was likely epileptic (unlike the neurologist's thoughts at the time, which leaned towards the inflammatory), was a one off random event, with about 60% chance of happening again (because all of us have a 30% chance of a random seizure, and the autistic have a 30% chance of having a seizure, so Billy being both 'us' and 'autistic' gets a double chance).

 - All the new events that have become a part of Billy's life (staring spells, repetitive motor gestures, interrupted speech, tongue thrusting, eye rolling, hyperfocussing, intermittent loss of cognitive focus) are all 'behavioural' (one of my favourite words).

 - There's no point doing the trial of steroids (to see what effect they have on his language/general function) we were planning, as the frontal lobe epileptic activity we can see on the EEG is not in a language centre. This, despite the fact that steroids reduce inflammation, not seizure activity.

 - There is no relationship between Billy's bout of Transverse Myelitis at 3.5 and this activity now. He is just 'unlucky'. The neuro had not looked in depth at Billy's new MRI, as the report said 'no change' from the one Billy had at 3.5 when he had Transverse Myelitis (which, unless I am majorly mistaken would have been an exceptionally unwell brain... so if it's the 'same' then I'd be worried, but I'm likely misreading the situation).

- Billy's hearing sensitivity is 'emotional' and requires the attention of a psychiatrist (yes, a psychiatrist, despite the current work of the ENT, the OT and the CBT psychologist).

 - Autistic kids need socialisation, and really Billy should go to school so he can learn to socialise.

 - See you in 6 months.

And so we go on.

No more editorialising on what the doctors should know, or should do. No more waiting and gnashing of teeth.

Head down, bum up. We know something new today that we did not know yesterday.

Billy has a very active frontal lobe. My next step is to Google the shit out of 'active frontal lobe' and work out what it means. I'm going to find out all I can about what that means for his brain function, behaviour and ability. Then I'm going to support it, any way I can.

At the same time as we were in hospital, a teeny weeny storm was brewing in the autism tea cup, about whether Jenny McCarthy was telling parents they were victims in her keynote at Autism One in Chicago this year.  There were huffings and puffings and more reasoned responses from all over the autism community.

Billy's time in hospital, again, clarifies what I think about this particular swirling of the winds.

I think my child is sick. On top of being clever, and autistic, and beautiful and witty and tall... he is sick. I think he is one of a growing generation of children who is sick, and autistic. I think I, as his mother and as one of the parents of this generation of sick and/or autistic kids, have a moral right to stand up and be counted.

I want to seek information, I want to make change. I want to do this for my child and for his peers. I want to do this for the kids coming up behind him who are charmingly lining up their Thomas trains. I want to do this for the kids who are in utero startling while their glowingly expectant mothers and fathers watch movies. I want to do this for the babies not yet thought of...

I want to prevent autism, in the same way I want to prevent people getting sick from random, irresponsible pesticide spraying or second hand smoke. I do not know what causes autism but I do know I want it to stop. I do not know what makes autistic biology different to NT biology, but I know we need to know so we can make kids less sick. If people don't think their autistic kids are sick, great, that's awesome. They are autistic. Once they were one in 10000, now they are one in 88. That alone should make you sit up and demand to know why. Many, many, many autistic kids are also very sick.

If autism is there, great. We deal with it. If it doesn't have to be there, then for the love of god, I want to stop it.

Clearly, that's just me. What other people choose to do in response to their life circumstances is of no concern to me. That's what makes me a blogger, and someone else a public figure/celebrity/politician.

For now, I take Billy's epileptic activity in his frontal lobe, and add it to the folder of medical reports, that adds to the folders of all the parents of all the autistic kids of all time. So we may one day know what the freaking hell is going on.

Actually... that's an awesome idea.
Oh crap. Another project.

1 comment:

Anonymous said...

Well, crap. I guess that is "news", but it's hardly "helpful news" really. Which I'm sure is what you were somewhat hoping to walk away with.

AS for "Billy needs to be in school", well I think right now he's in the best school there is - for Billy. With someone who I'm sure is the best teacher in the known universe for Billy.