A Little Something Extra

Saturday, October 3, 2009

Day 3 of 31 for 21 - Teeth and Hypotonia

Amy asked the following:

"I have a friend here whose daughter has DS, and she ended up with a couple of teeth (bottom middle two) that didn't develop and come in. Does Micah have any tooth issues related to DS?Also, can you tell us about how he's really flexible-I mean limber?"

Yes, Micah has some funny teeth things. First, he only had 2 teeth until he was 19months old (he didn't have any until... hm... wish I had titled a blog posting "teeth"... I'll have to get back to you on when he got his first tooth). He does *almost* have 2 more. And oddly, the two that are coming in are his first upper molars. I had thought the were eye teeth (picture dracula with just 2 bottom teeth and upper fangs). But there's more tooth coming through the gum now so apparently they're molars. I had heard that most kids with Down syndrome (Ds) get their teeth later than average and that they sometimes come in weird order. That has been the case for Micah.

Yes, Micah is insanely flexible. It's due to hypotonia (low muscle tone), and it's very common with Ds. I've actually seen photos of some kids who are pancaked over and sleeping (think about sitting with your legs out and slightly parted, stretching out, putting your belly on the floor, and falling asleep). Weird, huh? Micah has never fallen asleep that way. But he will sometimes flop over like that and pull his legs all the way around so that he's lying on his tummy. And vice versa (getting up to sitting from his stomach, he will swing his legs around... it's definitely "cheating" and we try to stop him when he does that). Hypotonia is actually one of the first indicators of Ds in an infant when there wasn't a prenatal diagnosis (if I think about it later this month, I'll post a list of other indicators). Babies with Ds sometimes come out "floppy" and don't make fists and curl up in a ball like a typical newborn. Most babies curl up their bodies and bend their legs to get their toes in their mouths. Not Micah. He grabs his foot and pulls it straight up to his face without bending his leg.

Hypotonia can also cause feeding issues, speech delays, and digestive difficulties. Lucky Micah... he gets all of those. After we move to MN, Micah will need to get fitted for orthotics due to his weak ankle muscles. I'm hoping they will help him feel more comfortable bearing his weight while standing. As a side note, low muscle tone does not equate with muscle weakness: the muscles can be made stronger, but they will most likely always have low tone.

Sorry I don't have a good picture to post of Micah's flexibility. I'll try to find one later.

Thanks for asking, Amy. I'll be addressing Jodi's question tomorrow. Anyone else care to ask something?


Baby Gabe said...

I just looked back on you blog to when Micah had his heart surgery and all I have to say is...wow, what a rollercoaster. It was good for me to read and I love looking at the pictures to see how he's grown. I do have a question. I know Micah has a Mickey button now, but back when he had a GJ tube, how did you prevent keyholing? This is a minimal concern right now with everything going on, but I know Gabe is going to pull on it and they usually don't switch it over to a Mickey at CCHMC till it is a couple months out and the stoma is tight.

Jonathan said...

Thank you for answering my questions. :) I really do learn a lot from you guys! Love to all!


Andy and Katie said...

Love your posts, Jennie!

I have a low muscle tone girl and she had issues learning to stand....the orthotics made a world of difference...it was night and day.

Keep up your postings....really, Micah's life is amazing!!!

Much love,

ps--look for a bag at Babyland tomorrow :)

Lisa said...

Jeannie I so appreciate your blog & I think God picked out two amazing parents for Micah. Seriously, you deserve a Dr. in front of your name! I love reading about Micah's great accomplishments & I'm on my knees in prayer with you & for you during his struggles. Thank you so much for being so honest & open & helping raise awareness for DS, I know I've certainly learned a lot from you!

In thinking about what I could ask you about DS that you haven't already shared on, I was wondering if you could share on how you've educated Nathan about DS and if you have any resources or tips on helping children understand DS.

Thanks Jeannie, I'm so excited to find new posts from you in my reader lately!