Cooper's Health: an ongoing series. The beginning

One of the first "scares" when we learned Cooper had Down syndrome was whether or not his heart was healthy. About half of babies with Down syndrome are born with a congential heart defect that requires open heart surgery. So far, Cooper's heart has checked out clear. We have a follow up next week (at about 13 months old) just to make sure it is doing okay.

There are many possible health issues a person with Down syndrome can have. Really, the health issues aren't any different from any other person. But from what I've understood so far, the extra chromosome can put extra strain on every system of their bodies, and therefore their risk of nearly every ailment on the planet is higher.

Cooper has been amazingly healthy so far, but I've spent my fair share of time researching and talking to other parents to try and figure out what's best for him. I'm grateful for the groups and places that allow us to share our experiences. In my opinion and experience, there isn't a whole lot of research involving people with Down syndrome, so having other parents to lean on during times of medical stress is invaluable.

I wanted to start an ongoing series called "Cooper's Health" to talk about things we have encountered and what we have discovered as we go along. I hope it will be a resource for others and myself to document what we have been through.

And as a disclaimer, these are just experiences. Not advice, not what you should do. Just what has happened for us and what I've found so far.

When we first brought Cooper home and I knew for sure about his extra chromosome, I became obsessed with finding how to help him develop best. I read and asked people and searched online and read some more. I wanted an equation to give him his best life. I wanted an "easy" way. A path that would guarantee he would be healthy and live a great life.

I quickly found that a life with Down syndrome is not a life with an equation. There is no one way for Cooper to live, any more than there is one way for all of us to live. I didn't want to, but I had to figure it out for myself. I had to figure it out specific to Cooper. It felt overwhelming and terrifying. It often still feels that way today.

As I talked to other moms and tried to get involved in the Down syndrome community online, I found tons of resources and stories. I found groups and searched for the things on my mind. It was overwhelming at first. I wanted to know everything all at once, but I learned to take it slowly. I'm still learning that. My anxious mind creates in me an urgency to figure everything out before making decisions. I will not quit until I feel I know it all. Great for researching. Not great for decision making.

I came across a group called "Crunchy Parenting and Down Syndrome" (and others). I read through posts and asked what questions I had. I was referred to a supplement protocol specific to people with Down syndrome called Targeted Nutritional Intervention (TNI). I began learning about these supplements but got overwhelmed pretty fast. Today I still haven't made any decisions on starting the protocol or not, but it does seem promising. Again, I am not recommending or saying what anyone should do, just sharing my experience. If you would like more information I can direct you to the group.

One thing I did learn in researching the protocol is that people with Down syndrome have a thinner blood brain barrier. The blood brain barrier is important for keeping toxins away from the brain. And once I knew that, I began to question vaccines.

I know this is a hot button topic. Not here to debate. Judge me if you want. But this is where we're at. Cooper had the regularly scheduled vaccines up to 6 months. I took them very slowly, spreading them apart by two weeks at least. He had a weird lump develop after the 6 month round of shots near the injection site, so I have opted (so far) to continue to delay. This could change. But so far, I am sticking with it.

In my attempt to keep my child developing "normally" I took him to be evaluted for a head shaping helmet. One side of his head was a little flatter than I liked. His doctor didn't think a helmet was necessary, but I insisted. I remember telling my husband, "Cooper will already have so much going against him. I don't want the shape of his head being one of those things if I can help it." So I loaded up our kids and drove over an hour away for the free assessment.

The tech scanned his head and said their helmet really couldn't help the part of Cooper's head that was flat. After all the effort I put in, he didn't get a helmet. But I still think it was worth it for the picture. He looked like a mini Buzz Lightyear.

Somewhere along the way I found a list of health considerations to watch and check for that is specific to people with Down syndrome. As far as I know, it's pretty up to date with the latest research so I appreicate having it as a resource. It called for a blood draw at six months and one year, and every six months to a year thereafter, depending on the results.

The blood draw monitors several things. First, thyroid levels which are commonly affected in people with Trisomy 21. It also looks for elevated white blood cells that could indiciate leukemia or lymphoma. Testing for celiac is included as well because it has been found to be common in people rocking an extra chromosome.

The list also called for an eye exam, hearing exam, and ear, nose, and throat appointment somewhere around a year. Vision, hearing, tonsils can all be issues for people with Down synrome.

I took Cooper to two different eye doctors, both who said his eyes looked great.

Cooper had three different hearing exams, all came back clear.

The ENT doctor said his throat (tonsils) and ears looked good as well.

Within each health discipline there are debates about what is best for our kids. Do they need their tonsils and adeniods removed early, just because? Can they outgrow potential issues with vision, or should surgery be the first line of defense? Each situation and each child is different. It's difficult to know what is best, and at times, it's scary trying to decide.

So far, we haven't had to do any intervention for hearing, vision, or throat. We're hopeful that continues. But we will continue to watch and try our best for him, the same way we do for our daughter. The same way any parent would do for any of their children. It's just what we do!