The Diagnosis

So here is the single most important thing I'll tell you in this blog.. if you take nothing else from this, take my advice to make sure you get an ACCURATE and DEFINITIVE diagnosis for your child's "condition" IN WRITING!

I can't tell you how often we've needed a physician's letter or proof of diagnosis to even apply for services.  I know of other families who have had situations where the condition has not been discovered/defined and that children are WAITING for services because no one knows where they "fit".

Also know that even if you have a diagnosis - it can be changed later to be more accurate if you discover more as the child gets older.  Just get something written down so you can benefit from early childhood intervention.

Okay so - at around 6 months of age, I took T to neurology at the children's hospital and she had a clinical examination.. I told the doctor of her symptoms stating that I didn't think she had any symptoms relating to hydrocephalus but had almost ALL the symptoms relating to cerebral palsy (thumb in palm, scissoring legs, etc.).    He took one look at her and looked at me and said outright "yes, I believe she has cerebral palsy".  How refreshing!  I think he realized that I'd done all my research and wasn't afraid to hear the truth.  It makes me wonder if other doctors sugar coat things or are wishy-washy so as to cover their butt in case they're wrong...

Anyway, we ended up doing the MRI to find the source and extent of the brain damage.  When the neurologist presented the results, he said "good news - her ventricles aren't getting bigger, bad news - she's missing parts of her brain"  Sounds funny - but honestly it was a relief to know that we weren't in store for years of brain surgery and shunts.. but missing parts of her brain?  Seriously?  Seriously.

We stared at the MRI and, sure enough, gray matter - check.. white matter - hmmm, some missing.  Layman's explanation of brain matter: gray matter is where you do your thinking, white matter is what transfers your thoughts into actions (sending impulses to your muscles)  For whatever reason, (we still don't know) my child's white matter did not develop in utero which will make it hard for her to control some muscles in her body.  This explains why you see people with CP have jerky motions with their affected limbs.. think of it like a short in an electrical wire.. it works a little, then not, then works again.

SO - we had our diagnosis (in writing) and our neurologist (we love you Dr. Doja) referred us to the Ottawa Children's Treatment Centre where (after a few months waiting) we were able to start our early intervention program!