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Diagnois: No Diagnosis

April 7, 2009

I’ve blogged a few times about how we have continued to seek a diagnosis for IT Boy, only to wind up with no diagnosis.  He’s 2.6 years old, and we know little more about what’s causing his delays than we did when we first started noticing something was up.

Genetic testing turned up nothing.  One or two folks reading his progress reports have said they have seen spectrum like traits, but no one who knows the Boy think he’s on the spectrum.  The only thing we are still holding out on is having a brain MRI, but at this point it’s not for lack of trying, it’s for lack of room in the schedules of hospitals to do the damn test. 

We’re certainly concerned, as we are moving from Early Intervention to CPSE at the school level.  Will not having a label of what’s wrong cause IT Boy to lose out on the services he so desperately needs?  Is our plan of treating the symptoms enough to go in there with.  We have few people working with him who want a diagnosis, even one that isn’t something you would pin on a 2 year old, and that’s where I start to get a bit peeved. A diagnosis for the sake of a diagnosis doesn’t fly with me.

My OT, aka my personal voice of reason,  put it best – a diagnosis isn’t always what you expect it to be.  Sure, you can Google it, join a support group, and get a little bling badge to put on your blog (her words, BTW, which made me smile).  In the end, it doesn’t guarantee you anything.  In fact, it can often pigeon-hole you into getting less therapies because that’s what the other kids with XYZ ailment get. 

So, we wait.  We’re seeing good progress, and we hope over the next few months that he will come even further along.  Most of all, we just love the stuffing out of that little boy, and hope that we’re doing the right thing for him, as any parent would.

3 Comments leave one →
  1. darci permalink
    April 7, 2009 10:20 pm

    I don’t think it is wrong to want a diagnosis. However, at two, it might be very difficult to achieve. Having one may give you some peace of mind, a track for treatment, and like you said, support of others with the same diagnosis.

    I do hope that you get that MRI soon. It may be the key that unlocks the mystery for you. I walked around for seven years with a neurological disorder, was seen by many experts, and only at the point that someone ran the right test, did I finally get to know what was wrong with me. It didn’t change my condition, but it was a huge weight off of me and my family to have a path. Whether we decided to stay on it or not, was our choice. As far as the services, programs are so much better these days, and agencies are better equipped to handle these on a case-by-case basis.

    As for IT boy, he couldn’t ask for a better advocate than you. Good luck! Hope you’re having a great time in Florida!

  2. PastaQueen permalink
    April 8, 2009 9:25 am

    You should get the MRI in Indiana. I have MRI’s here all the time! (So sad, yet so true.) I’ve gone through a similar thing with my headache of unknown origin. No one knows what’s causing it or what to definitively call it (Chronic Daily Headache? New Daily Persistent Headache? Transformed Migraine?) All we can do is throw pills at it and try dozens of different other things.

    I’ll cross my fingers not necessarily for a diagnosis, but that IT boy gets all the help and support he needs. Sounds like his parents are looking out for him, which is a great start.

  3. pastaqueen permalink
    April 8, 2009 9:27 am

    Whoops! That comment from “Iva” was really from me. Can you delete it or edit it? Thanks!

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