Wednesday, February 25, 2009

Out of the mouths of doctors

Lots of thoughts in my noggin tonight. Today Drake had "clinic" at CCS (where he receives his therapies). I guess they occur every 6 months and since Drake just hit his 6-month mark at CCS, it was time. The clinic involved meeting with a doctor and all his therapists to go over his progress and see if he needs any medical devices to be ordered or whatnot. The doctor was nice, although I got the sense early on that maybe she wasn't all that clued in. For example, when we were going over Drake's medical history and I told her Drake had been diagnosed with PVL, she asked what that was. What? She is an older doctor who advises for a state service that supports kids with physical disorders.


She looked at Drake, got him down to his diaper, and did her evaluations. At the end she said, "This kid is doing great! You know, some preemies outgrown their physical delays and are all caught up by age 3. Drake may be one of those kids." So I said, "Well, that's fabulous to hear, but my husband and I are fairly certain he will have a CP diagnosis by age 3." And we think this because even though he is making great progress, he still has a brain injury and is still very delayed and has neurological signs of CP, like mixed tone, etc. jShe replied, "Maybe, maybe not. And if he does, it would be a very mild case of CP, I would think."

We should be out celebrating that a doctor has said this to us. But it felt so far removed from what his other doctors have said, that I felt cheated by the good news. His other doctors agree that if Drake were diagnosed with CP, it would most likely be mild (though we don't know what mild means), but not that he is going to "outgrow" his delays from PVL and be like any other kid. Doctors need to be careful what they say to parents. My sister was at the appointment and she called my parents to tell them the news afterwards. Then they called me, all excited that they heard Drake isn't going to have CP.

Urgh. It's so hard to be on the roller coaster. And I know it doesn't matter in the long run. Whether this doctor thinks he will have CP or not doesn't change him in any way. He will do what he is going to do regardless of a diagnosis.

But again, doctors need to be careful what they say and mindful of whose hopes they lift and crush.


Hopeful Mother said...

Oh my goodness - I think I could have written this post myself. In fact, I almost did about a month ago when Alex had his CCS clinic.

I'm not sure what to think about it - on the one hand - don't they see lots of kids with CP at CCS? Shouldn't the ped know? On the other hand, maybe they don't see lots of *young* kids with a potential CP diagnosis, so they don't know what they're comparing to? Is their "definition" of CP that different from the neuro?

I really don't know, but we had the exact same experience with Alex at CCS clinic a few weeks ago.

It makes me feel like I'm in denial about Alex's situation - but in reality, it is just not crystal clear to anyone, and it sucks being on the roller coaster.

In our case, the CP is a speculated diagnosis since there was no stroke or brain bleed (that we know of) and we do not yet having any imaging to confirm anything. We are finally scheduled for an MRI next month, but I don't have huge hopes for any new answers.

Like you said, it doesn't change who are kids are - us parents are the ones having to deal with the "labels."

Hugs to you.

Susan said...

I also feel like I could have written the same. It's a constant battle with family to remind them (?) or point out to them that there will probably be delays. I hope I'm wrong on some level, but don't take it as ... grrr.. love my kid to no end, no matter what. I'm not even sure why I feel the need to say that, you guys know what it's like!

I'm so happy he's in my life.

But for some sort of realization to myself, self preservation and to him to an extent, there will probably be delays. I don't want to deny to me, to him, to family who he is.

Anyways, I'm off on tangents.

I've had doctors say that maybe there won't be delays even though I already see them... why don't they! why are they in denial? .. I'm not. And don't need that 'hope'. I'm happy with my son being who he is.

Thank you for posting your blog.

and lots of love.