Monday, June 15, 2009

Torti-freaking-collis

If Grace was big enough to eat ice cream she would definitely deserve it for how good she was today. We spent a good portion of the afternoon at the hospital. A few weeks ago, we went to St. Paul's Hospital, a big hospital near our place. There she had an ultrasound on her neck which confirmed that her neck muscles are indeed the same size. We saw a physiotherapist who obviously doesn't see a lot of babies. She didn't give me much to work with as far as exercises go. That visit didn't sit quite right with us, so we decided to try a bigger hospital today, Seoul Adventist Hospital.

The pediatrician at SAH also felt her neck and said the muscles feel fine. And I agree. Grace can lean her head right; I catch her doing it once in a blue moon...she just doesn't do it very often. This pediatrician said that there are usually three reasons for head leaning. 1-muscular (mostly ruled out) 2-vision (one eye isn't working properly so baby leans head to compensate). 3-mental (this doesn't seem likely because Grace is bright and alert).

So, we saw an eye doctor (actually two...they were a team since they too don't get a lot of infants!). They did some tests, like covering one eye at a time and getting her to follow objects. They also looked at her eyes. Their conclusion what that her eyes seem normal, but they also added that it's often very difficult to tell when babies are so young. They gave us some eye patches and told us to do the same sorts of things with her and see if we notice anything strange.

So, this is all very unsettling. She is obviously still leaning left, so what is the reason? I've been googling "torticollis" and "head leaning" and it seems there are other reasons for head leaning. We have not been referred to a bone specialist, strangely. I've read about a condition called Klippel-Feil Syndrome, where some of the vertebrae at the base of the neck are abnormally shaped, causing the spine/neck to curve. It can be treated. There is also hip dysplasia. There are many other things, according to this informative webpage from the Seattle Children's Hospital.

So it was another unsatisfying hospital visit. And worse, the longer I go with no answers, the more my brain gets carried away with thinking the worst. Today at the mention of vision problems I instantly thought of Sejin's poor brother who has a condition which has caused him to go nearly blind in one eye. But that's jumping to conclusions...

Next on the hospitals to visit list is Seoul National University Hospital. I think I'm going to push to get an X-ray, or even an MRI. I want to know what's going on.

5 comments:

wevegotseoul said...

Have you mentioned Sejin's brother's condition to doctors? I wonder if there is a way for them to rule that out?
There's a lot of potential stress that you will be putting on yourself. I think you should keep reading up on it but try to not get too carried away with theories. Are there no specialists here that you can take Grace to? If not even for the torticollis, then even just pediatricians that won't seem so overwhelmed by the presence of a baby!

HLee said...

Don't give up. Take her to bigger hospitals. I hope they find out the cause soon.

Mama Seoul said...

It could be nothing, but might be something so it is good to keep going until you feel satisfied. Make a list of questions for the next doctor and points you want to cover (like Sejin's brother's eye condition and that syndrome and hip dysplasis that you saw on the Seattle hospital website, maybe even print it out).

Take an actual piece of paper into the appointment. Make sure you have it out of your bag and in your hand before you go back to the examining room. I say this, because it is so easy to forget what you want to say especially if you have to wait a long time or the doctors seem impatient or nervous. I've been known to bring a list in my planner and leave it in my bag and forget to ask things because I get distracted once I get back to the exam room.

A lot of things respond to treatment better when found early so it is good to pursue things until you are satisfied. If, after they check out her hips and skull they don't find anything, then maybe you can find a better physical therapist to help you with exercises to strengthen the other side of her neck or prevent future problems and just take her in periodically to have her eyes checked.

Sorry you aren't getting any answers, that is very frustrating!

Catherine said...

That's so rough. I hope you get some answers soon.

Becky said...

Keep asking questions. I think an MRI is a good idea. Is there a doctor back in Canada that would be willing to confer?

You will do anything when it's your child and I know from experience. You have to me an advocate for Grace.