Interesting Things I've Learned

Over the past 4 months, I've learned a lot of new things about children and adults with DS. Colton may experience all, some, or none of these things. No two kids are alike, so we will just have to wait to see how having one extra chromosome will affect Mr. Colton.

1. Ear Canals and Nasal Passages

They have more narrow nasal passages and ear canals. It can be hard for a Pediatrician to see the eardrum, which can lead to undetected ear infections. Usually, a child with DS will have to go to an ENT in order to have their ears checked and/or tubes put in. I asked our Pediatrician at our last visit if she could see Colton's eardrums...and she could! So...I guess that's a good thing. He hasn't had an ear infection, yet, but that could be something we have trouble with in the future. Chronic ear infections can lead to hearing loss, so it's important to keep an eye on. The narrow nasal passages can make a cold more miserable because they don't drain as well. Upper respiratory infections are also common. These are things I was unaware of a few months ago.

2. Thyroid Issues

People with DS can have thyroid issues that can lead to weight gain. Colton will have to have his thyroid checked annually. If you haven't already noticed, Colton is quite the chunk. I asked our Pediatrician about it and she told me that as long as his height and weight are proportional, he's fine. Luckily, he's in the 50's and 60's for both, so we are good right now. He also has the advantage of having a tall father, which might make him a little taller than the average DS male....unless of course he gets my height (hehe). In the future, we will probably have to monitor the food he eats so that he doesn't gain too much weight.

3. Teeth

So...they don't always get their teeth in the same order as a typical child. I've heard stories where fangs came before the front teeth. Their teeth can come in a random order. I've read that they can get their first teeth at 12-14 months, but it may be as late as 24 months. He may not get all 20 teeth until he's 4 or 5, where a typical baby usually has all 20 by 2 or 3. They usually have smaller than average teeth and/or missing teeth. Sometimes they have larger tongues or an average sized tongue but a small upper jaw that makes their tongue too large for their mouth. Tongue thrusting can be an issue, so we do mouth exercises to try to keep Colton's tongue moving right and left and up and down in his mouth. We don't want him to thrust his tongue because it can cause speech problems as well as feeding problems.

4. Speech

Low tone just messes everything up. The muscles in the mouth, face, and throat are low tone, so this can cause feeding issues and speech issues. A lot of people with DS have speech impediments because of this. I do exercises in Colton's mouth to stimulate and strengthen the muscles in his face/mouth/tongue. People with DS can understand much more than they can express. It may take them longer to learn to speak, so a lot of children learn signs to keep from getting frustrated. They want to tell their parents things, but they just can't figure out how to get it out of their mouths. That's why speech therapy is so important at an early age. Colton hasn't qualified yet, but the Speech Therapist gave me some exercises to do daily. I'll share those in a later post.

5. Vision

Apparently, they can be born with cataracts. Luckily, Colton doesn't have cataracts. Eye disease is reported in over half of patients with DS. They could be less severe like tear duct abnormalities or more severe like vision threatening diagnoses like cataracts. Most people with DS will have to wear glasses as some point in their life.

6. Sleep Apnea

Low tone can cause sleep apnea because the throat muscles relax as we sleep. If they relax too much, they can block the airways. Some people with DS have to have sleep studies done because of this.

7. Fertility

I read that 50% of women with DS are fertile. If these women have babies, 35-50% of those babies will be born with DS or other developmental disabilities. There is limited information about Men's Fertility. There have been 3 confirmed cases with a DS father. We might see an increase in the future because men with DS have so many more opportunities to be successful. More and more are getting married. Also, life expectancy has increased significantly in the past 30 years. We do know that men with DS do have a lower overall fertility rate than men their age that are typical.


So...there you have it! A few things I've learned over the past 4 months. I know that I'll continue to learn even more information in the future. It will be an interesting journey with Colton, so hopefully by reading this blog, you can continue to join us.