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Back to the Genetics of It All

  • Posted on September 21, 2012 at 8:00 AM

So, as I said, it was premature to worry about saying “NO!” to brain surgery. It’s not going to happen. Even the doctor doesn’t think it’s a good idea. Yay! On the other hand, it means Willy will probably be on anti-seizure medication for the rest of his life. So, there’s that.

I learned quite a bit from this visit. First, I learned that all the seizure activity recorded by the EEG started in the same spot in Willy’s brain and that they also saw spikes in this location even when the spikes didn’t become seizures. After a seizure started, it became generalized throughout Willy’s brain. Second, I learned that several anomalies were identified in Willy’s MRI. The main one concerned his ventricals, which are structured atypically so that they “leak” cerebral spinal fluid into a part of the brain that isn’t common. Near this site, there are also “extra” folds in Willy’s brain. And, Willy also has a cyst that is not considered significant.

This data has led Willy’s neurologist to suspect that there is a genetic factor, so Willy will be seeing a neurogeneticist to see if we can learn more. Identifying a genetic cause may just be a “point of curiosity” that does researchers more good than it does us, but it may also indicate other associated anomalies to watch out for, like heart conditions or something.

Due to the possibility of a genetic factor (which may or may not be hereditary), the neurologist is also concerned about Alex. There is a possibility that Alex experiences subclinical seizures that we don’t know how to identify, so I’m to get his pediatrician to refer Alex to the doctor and the doctor is going to order Alex’s MRI to see if there are similar anomalies that the other doctors missed because the ones identified on Willy’s MRI were subtle and because Alex’s doctors weren’t looking for it.

While I’m not overjoyed at the possibility of 24-hour video EEG round two, I realize that it would be better to catch any seizure activity earlier rather than later. I also read an article that suggests (though the article admitted the data was insufficient to be conclusive at this point) that treating children who have autism and who also have irregular EEGs, even when they don’t have observable seizures, can improve the child’s quality of life, including their autism symptomology. An extreme example was a child with autism who was non-verbal before starting seizure medication, but who was able to use verbal communication afterwards.

All in all, it was a lot of information delivered in a relatively short amount of time. We’re all still processing what this means.

Autism Organizations: Which Ones Do You Trust?

  • Posted on July 30, 2012 at 8:00 AM

There are many autism organizations out there—from ASAN to Autism Speaks and all sorts of organizations in between and among them.

They all have their own agendas, their own missions, their own purposes. They each behave differently, though there are similarities. Their memberships are different, though there are similarities.

Which ones do you trust and why?

Up until now I’ve steered clear of joining any organizations, because there are often legitimate voices criticizing each one. I did my stint in politics before my children’s diagnoses and my experiences destroyed my faith in the integrity of political organizations. It is far too easy for political organizations to lose sight of their original agendas, to play lip service to those agendas, while directing the efforts of the organization into some expedient side-road. And that’s for those organizations with legitimate goals in the first place.

I’m not sure I’ll ever go back on that decision. But membership—that commitment—isn’t the only form of participation. Still, it’s difficult to know which organizations are worthy of becoming an ally and which organizations are too vested in their own self interest that they act at the expense of the causes they proclaim to support, the causes that are their public reason for existence.

So, which autism organizations do you support and why? How do you show that support?