Ds clinic visit

Our appointment with our local Down syndrome clinic was this morning. It's really a neurology clinic affiliated with the children's hospital, seeing patients with all kinds of neurological issues.

Although it was not a whole team of doctors and specialists as I had imagined a Down syndrome clinic would be, I'm not sorry we went. It's run by, as far as I can tell, one doctor, a neurologist. After filling out the requisite paperwork, we were taken back to a small exam room where I turned Finn loose from the stroller and he proceeded to wreck the joint :) A "coordinator" came in to ask some questions, and he noticed Finn's Stones t-shirt, so we had a nice chat about the Stones and when their music lost its magic (he would have had a better conversation on this subject with my husband, for whatever that's worth).

Then Dr. Tourney, the neurologist came in. What a character! Kind of a goofy-looking, middle-aged woman. No white coat, just street clothes, and a child's backpack in bright, primary colors on her back (containing Finn's chart, etc.). Way to put the patients and parents at ease! I liked her right off. She had a thick British accent and kept referring to Finn as "a delightful little chap," and our pediatrician, who, it turns out, she went to medical school with, as "quite a lovely fellow."

I can't say we learned anything new from the appointment, though she is obviously extremely knowledgeable about Down syndrome. We were there for about an hour, and she asked a ton of questions about Finn from birth to now, and she examined him. She seems to think that our pediatrician has covered everything very well as far as diagnostic tests and so forth for Finn, and didn't seem to think anything is necessary that we haven't already done. I did mention the eye-rolling thing to her (which I still notice him doing from time to time), and from what I described, she doesn't think it's anything to be concerned about. She's also not concerned that he was pulling up to standing and has now stopped; she said that development for all babies - not just those with Ds - tends to often be a start-and-stop process.

So no earth-shattering revelations, but I'm glad we went just the same, just to have all our bases covered. The doc said she'd be "delighted" to have us come back once a year so she can

"have a little look at the chap."

Ds Clinic

Recently I learned that the children's hospital Finn spent his first couple of weeks in has recently opened a Down syndrome clinic. That's what the website calls it, a "Down syndrome clinic." Through the blogging community, I know a lot of other parents who have children with Ds take their kids to a Ds clinic periodically, and based on what I've read on other blogs about this, and from the website of this particular Ds clinic, my impression was that a Ds clinic is a team of doctors, specialists, and therapists whose focus is on Down syndrome.

I love our pediatrician, and we've been with him for a long time - since my oldest was born 13+ years ago. He's a wonderful doctor, and while I have no problem continuing to take Finn to see him for his overall care, he's not particularly knowledgeable about Down syndrome, so I thought maybe having a team of specialists whose focus is on Down syndrome see Finn periodically might be a good idea. However, it appears now that it's just one doctor, a neurologist. We got a referral from our pediatrician, and I went ahead and made an appointment for Finn for late in March. But I'm kind of wondering right now what's the point? Is this necessary? What benefit should we expect to get from this? If this "clinic" really just is one doctor - a neurologist - what exactly is the point? What questions should I ask? What should my goal be in taking Finn in? Should I even be bothering with this?

I'd really appreciate input here! What has your experience been with a Ds clinic?