Sunday, October 16, 2011

31 for 21: Day 16 ~ Hopes & Fears

As a parent of a child with a lifeling disability, there are many things which can be feared. Some of the more imminent issues, like hypothyroidism or eye problems or cognitive impairment or physical delays can be consuming in the early years, but they don't come close to touching the thing I fear the most. My biggest worry is the possibility of losing my child. According to current data, people with T21 have significantly higher rates of early-onset dementia (like Alzheimer's) and an average lifespan of about 60 years.

I suppose that the possibility of losing a child, in mind or body, exists for every parent, but I doubt it's such a looming issue for the "general" population. Most parents are fortunate to be able to shrug off such concerns and figure that they're unlikely to be unlucky enough to experience this particular heartache.

In my case, I'm horrified by the thought of my baby developing dementia in his 40's. Unfortunately, 25% or more of people over age 35 (with T21) will show signs of Alzheimer's-type dementia. That's one in four! That hits far too close to home for me.

Currently, there are some research initiatives looking into medications which may help protect the brain from being affected as easily by this devestating disease, but there is not yet anything approved by the FDA. Some parents of children with T21 are using TNI (Targeted Nutritional Intervention) to try to improve the current and future condition of the brain and protect it against decline as the child becomes an adult. There is a lot of information out there, but none of it is a guarantee. Some studies show benefits; some studies show none. The general consensus seems to be that it's a personal decision whether supplements and vitamins are worth spending money on ~ some can be very pricey.

In the end, I've decided to invest my time, energy and some money into trying TNI for Levi's benefit. Even if I don't see a lot of short-term gain in his development as a child, I may be helping to offset the problems that can occur as an adult. I want my baby to be with us (in mind and body) for as long as possible and I'll do whatever is within my power to make it so.

My hope is that before Levi reaches adolescence, there will be some effective options as far as medications and alternative medicines available to help protect the cognition of people with T21. As recently as 30 years ago, it was recommended to parents (in this country) that children with T21 should be institutionalized as they would never accomplish anything or be anything except a burden to the family and society. Parents proved the medical community wrong and once they got on board, great strides have been made in the medical community. With a little luck and a lot of hard work, Levi's generation and those after him may have the benefit of modern medicine that was not available to his predecessors. This hope allays my fears and allows me to focus on Levi and our family now and not spend so much time focused on the what-if's of the future.

Thanks for reading and now for the cute pic of the day (okay two ~ because I couldn't choose)

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