Got our CP diagnosis

JoJoGee

Well, Lily got over her allergies quickly.  So, we didn't have to worry about them affecting her neurology appointment.  The exam was pretty basic, as you all said it would be, but we got some good information.  Lily's MRI showed a PVL on the left side of her brain.  This, along with Lily's physical symptoms, clenched the diagnosis - Mild to Moderate Hemiplegic Cerebral Palsy.  Unbeknownst to us, many of Lily's other physical attributes are also common in children with this diagnosis (i.e Lily often reaches for objects with her thumb down, in a sweeping motion).

Because of the diagnosis, we are being discharged from the High Risk clinic, and we're being referred to the Cerebral palsy program.  While the diagnosis is a bit disheartening, I'm excited that it will open up new opportunities for therapy and treatment.  There is even the possibility that Lily will be able to attend the Pearlman center - a daycare which integrates literacy, assistive technology, and physical, occupational and speech therapies to improve the lives and outcome of children living with Cerebral Palsy (how cool is that!).

Of course, as with many children, the full outcome of her brain injuries will not be fully known for some time.  In addition to the PVL, Lily also has some generalized trauma to her brain.  This has caused an overall loss of grey matter, which could mean some learning and behavioral difficulties in the future (something DH and I always bargained for anyway - since DH has ADHD and we both have learning disabilities). 

Florak8

Wow, the Pearlman center sounds AMAZING!! What a blessing to have access to a place like that!

These days the sky is the limit for what our kids can achieve-- all of the therapies out there, when applied to little ones whose brains are so plastic, really can open up so many opportunities. 

I am glad you got some answers. I think that can really help emotionally, and as you are seeing it can help direct the therapeutic path as well.  

realisticdreams

That center sounds awesome and like PP said brains of little ones are so..amazing for lack of a better word.  Sometimes getting a dx is comforting and to others it is not.  Personally, I like having definitive diagnosis but that's just how I work.  

Do they plan to do a repeat MRI in X amount of time?  P's CP is right sided hemiparesis.   

JoJoGee

Nothing was mentioned at our appointment yesterday about repeating the MRI, but they might want to when we meet with the CP program.  Speaking of which, we got lucky and the CP program has an opening tomorrow, so we'll get to speed Lily's entry into the program by a couple of months.  Never knew I could be so excited about a doctors appointment!

realisticdreams

Holy cow!  That's awesomely quick!  Our CP dr runs a clinic too but we didn't go to clinic just saw him (he's a developmental pedi who specializes in CP) otherwise we just see our neuro for CP related things.  But I think our 1st appt with him took over 6 months!

MaxandRuby

We have a spastic quad diagnosis but if you ask my DCP she would say diplegia with a left hemi overlay. The current neuro would call it diplegia. PVL shows on DS2's MRI and there has never been mention of repeating it.

I can't write much since I'm on vaca and using a friend's PC but the CP clinic school place sounds awesome!