Wednesday, January 26, 2011

Our little case study

Maggie's 3D scan went well yesterday - she didn't give us any major scares this time. Although ever since we have been home from the hospital she has been vomiting more than usual. It's just the strangest thing that every time she is under anesthetic she does this. Oh well.

Anyway, back to the scan...thankfully, it was normal. Structurally (or skeletally) Maggie is fine. But this just boggles the doctors' minds. Because when looking at her, it just seems like there has got to be something going on either structurally or neurologically. But we have ruled both of those things out. So here we are back to square one , or so it seems.

What I have realized , after speaking with 3 to 4 different surgeons, is that Maggie's torticollis perhaps should  not even be called "torticollis." It took me a while to get this. And why I got so frustrated that these surgeons wouldn't just cut the SLD muscle (that holds her neck up) and be done with it. But the reason they aren't sure about doing this surgery that is often done on children with severe torticollis is that Maggie's "torticollis" doesn't present itself as normal infant torticollis. A baby with real torticollis is tilted in a similar position, but they cannot move out of that position. They are almost stuck there. Maggie is not stuck. She can move left and up and down. Furthermore, on a child with real torticollis the SLD muscle is so tight it's like a guy wire. Maggie's is tight, but not that tight. I can make her head go straight like it should, but she just screams and puts it back in the tilted position.

So that's why the doctors are perplexed. It's why her neurosurgeon brought down several of his colleagues in other fields yesterday and they five minutes just staring at Maggie as she bounced up and down and clapped with the nurses who were sweetly entertaining her. It's why Scottish Rite has decided to present her as a "case" on Monday night at the hospital. All of the doctors there will gather in a conference room, look at all her scans and hear her history. Then I will bring Maggie in and her doctor will manipulate her neck in all different ways. Then they will all talk and see if anyone else has any earth-shattering ideas.

You see, the neurosurgeon and several other surgeons are all leaning toward Botox, which scares me because a friend's child almost died after having it done. And I kind of feel like they don't know what else to do, and Botox isn't permanent so we might as well try it. But the Scottish Rite doctor today is not so sure about Botox (rather he's not sure it will make a difference) and that's why he wants to present her as a case. I almost jumped up and down when he told me we could come on Monday. Who would have thought one could be so excited about their child being poked and prodded and analyzed like a specimen? Let me tell you, this  mother is desperate for the right diagnosis and, more importantly, the right treatment. I am confident that God is getting us's just taking a litlte longer than I would like:)


  1. random, but a friend of mine's son had a similar situation and it had something to do with his eyes. they were able to correct that fairly easily and his neck straightened right up!

  2. Lee, I will be praying that someone out there, or a team of docs who get to see Maggie will be able to figure her out! What a great opportunity and I really hope it leads to something. And if it makes you feel any better - Rainer (11 mos) still isn't doing anything besides sitting up either! Hardly rolling, not crawling, not pulling up. Obviously I've been down this road before and I'm not worried. And clearly Maggie's a different bird than Rainer and you have worries that stretch far beyond gross motor development. But still, sounds like they're at the same place developmentally for now!

  3. That sounds like a wonderful thing to have her case presented to all the doctors. Good luck! Also I get really sick from anesthesia too with lots of vomiting. Next time maybe they can give her some Zofran (for the nausea and vomiting) which has been super helpful for me and other kids I know who have the same problem.
    Your in my thoughts and prayers always.