6.15.2013

Quick update

As you can see, the blog is undergoing some re-organization. In light of the current situation I felt that for clarity reasons it was important to update the content with Polymicrogyria information. Also, it gave me something to keep busy with to keep my mind off the unproductive ruminating.

Few things that we put in motion. First of all, we have referrals pending to the neurologist, geneticist and I believe the developmental ped that diagnosed Sophie with autism. Hopefully they will be able to provide some answers. The big question being- is she still autistic, or are her symptoms the result of the PMG. Of course who knows if we will get the "real" answer, as there is no medical test for autism and if they will go by outward symptoms she still meets the autistic criteria. She always did have the "things that make us go hmmm..." such as no real issues with change or transition (other than what you'd expect from a 3 year-old) and seemingly showing empathy, more so being distressed when others upset. Also, from what I read about PMG I did not come across a dual diagnosis with autism, but is it because it does not exist or because it is just harder to diagnose with the severity of other symptoms I do not know.

At this point we still identify with the autism diagnosis. It took us a year to wrap our minds around it, we can't just drop it like a hot potato until we are certain. So it is a transition time here, it feels like an in-between kind of time. We are presented with the MRI report without much of an explanation which points to one thing, but have been used to seeing Sophie as autistic all this time and it's like a veil that is gradually lifting. It would be prudent to remain somewhat tentative while waiting for the "official diagnosis" but it is rather hard to assume a clinically objective state when it is your child's health in question. The mind starts probing and latching to ideas.

One line of the MRI report jumped out at me as if it was highlighted. Among the medical jargon one phrase was clear and has been haunting me ever since I read it.

There is a thin septation seen in the right ventricle anteriorly which may relate to previous hemorrhage or infection.

Whoever is familiar with Sophie's history knows that she had a horrible regression which was preceded by a vomiting and diarrhea spell which lasted 2 weeks. As if I didn't feel guilty enough for not taking her to the doctor, this line was the final nail in the coffin. Hemorrhage or infection. Is that what she had, what caused her illness and regression? Regression is not commonly associated with PMG as it is considered "static" so something happened to her to cause the loss of skills. We will never know for sure, but I'm sure I will always wonder. While I am aware that if I brought a vomiting child to the ER the chances of an MRI being performed are slim to none, there's that "what-if"; what if we could spot whatever it was, stop it, avoid the regression.

But life goes on. I spoke with Sophie's speech therapist and we decided to start pursuing augmented communication in earnest. Since there is a chance she might never talk, I want to give her language in any form. I think without language she cannot develop higher-level thinking and properly express herself. We will start the process ASAP, and go with her level of interest of course.

I believe that brings everyone up to date at this point. I'm attaching a happy memory from the week, Sophie enjoying the bouncy castle at her sister's school fair. And her sister with doggy-face :)

 

1 comment:

  1. What a lot to go through! You handle it with such grace, but I can imagine how it must feel, after coming to terms to such a great extent with the autism, now having a whole new world to explore, and not knowing if it's autism at all, or autism AND PMG, or what. Wow. I know the feeling with the finding in the MRI very well. I have about 10 of those different things that I try very hard not to think about, possible reasons for Janey's regression. I'd tell you not to think about it, not to beat yourself up over it, that you are right that it's very unlikely she would have gotten an MRI anyway---but I know in my darker moments it's no good what anyone says not to think about. I will say it's almost good not to know why, sometimes, because knowing exactly why would be be too hard. It's great you are starting augmented communication! I am no expert, but I'd certainly think the earlier, the better, and in today's world, if I think about it, most everything is AC---I've never talked to you in person or any way but typing, but that doesn't make it less real to know you! Thinking of you as always.

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