Friday, May 4, 2012

Not sure how I feel about this....

Earlier in the week, our speech therapist came by and we did some chewing "tests" with Olivia.  I had a plate full of things that were or had been difficult for her to chew and navigate in her mouth.  Dried apples, cinnamon coated almonds... things like that.  She was able to chew them all, finally!  Success!

But as the ST noted, she was noticably better at chewing on one side of her mouth than the other.  This led us to a discussion about how she's always had a better side - even the OT and PT have commented on weakness on one side.  We've had scoliosis checks and leg growth checks because she favors one side and her hip seems lower on one side; all to come out normal.  It was finally determined to be some sort of muscular issue of unknown origin.  But during this discussion, our ST asked us if we'd considered a neurology consult.

No, we'd never had.  Not until that moment.  We (I) had always put it down to the PIC lines put in her when she was born. She had to lay there with the lines on the same side, the weak side, for almost 3 months because they had such a hard time putting them in the other side.  Once in, they didn't want to move them.  I had always assumed that it contributed to a type of atrophy of some sort and she would always be just a little weaker.

But neurology?  Never considered it.   I had a quick visit with her pediatrician this morning, and he mentioned as well that he had noticed an asymmetry to her face that corresponded with the opposite side of her body that has the problem (which made sense after he explained it).  As he began to talk about it, he mentioned mild cerebral palsy as something that might be considered.

Cerebral Palsy.  Of all the things I've thought about, I haven't heard that word since her early days in the hospital.  When no one could figure out what was wrong with her or why she was so motionless, CP kept popping up.  Once it was determined she had Prader-Willi Syndrome, I never looked back at that possible diagnosis again.

Not even when we visited her endocrinologist last year - the one with over 400 Prader-Willi patients.  The one who is the specialist in this field, who researches PWS kids and helps us find new breakthroughs.  The one whose assistant said, in taking our history once again and hearing the list of traumatic things that happened during her first few months, "You know that's not ALL Prader-Willi Syndrome, right?"  It wasn't even a blip on our radar, because the symptoms mimic each other to a certain extent at birth.

I wish I knew why I never pursued that weakness more thoroughly.  I'm not sure we would have done anything differently with a CP diagnosis.  But for some reason, that possibility is hitting me harder than if she were to get a PDD-NOS diagnosis, which is another possibility soon.

So now we have a neuro consult.  And a gastro one as well, for other ongoing issues she is having.


Cori said...

It is ALWAYS hard to hear that there "could" be something more going on with your matter if it's been on your radar or not. No one EVER wants to find out that anything could make life any more challenging that it already is for our kids. Knowledge is power. You will go to the neuro consult and see what they have to matter WHAT you find out.....She's still the same adorable little girl she was when you walked through the door....NOTHING will EVER change that!!

Hugs to you! I'm here if you need/want to chat!

Amber said...

I've only known you a short time, but I can tell you are a great mama. I don't know what to say (so why am I leaving a comment?:) but you and all you do for Olivia inspire me so much--don't be too hard on yourself for not pursuing that weakness, as you said. Hugs and hopeful thinking for your neurology appt.!

Ali Foley Shenk said...

I feel like there's always the possibility of "something else" looming on the horizon. Our kids have such a complicated medical situation with "just" PWS that it's enough to make your head spin. Add anything else and it just stinks. :( Praying for peace and that the upcoming appointments lead you in the right direction. We're seeing neuro soon for suspected seizure activity and to follow up on sleep/narcolepsy issues. Blah.

Janet Gulley said...

It is hard enough to figure out what is PWS and what is 'age related' behavior... Add in other stuff and you've got some pretty muddy water. We started PT months before we knew AJ had PWS. Truth is, we had pretty much the same goals and did the same things before and after diagnosis. So, if there is additional neurological blah, blah... good to know, but truth is, you have probably been doing all you can for that too along the way.