31 for 21, DAY 22

Today, I really hate some of the medical aspects of having Down syndrome. It’s rare that I have these days, but today is definitely one of them. The purpose of writing a blog post every day during the month of October is to promote awareness for Down syndrome. A lot of people don’t realize that there are several medical issues that come along with Down syndrome. While this post will make you aware of that, it will also reflect the struggles (and sometimes anger) that come along with being a parent of a child with Down syndrome.

Austin is still vomiting and has very little food intake. Dr. C ordered an Xray of his stomach and found no abnormalities or foreign objects. I’m thankful for this news, but Austin is on day 6 of vomiting. Projectile vomiting. Last night, he woke up screaming and sure enough, he vomited all over the place. He ate some toast this morning, which made me very happy! However, he ended up projectile vomiting several hours later for no apparent reason. He refused to eat lunch, so he hadn’t eaten in at least 5 hours when this vomiting episode occurred. He doesn’t have a fever, but he’s VERY irritable and NOT himself at all. Something is bothering him and I hate that I don’t know what it is. This isn’t a stomach bug. He doesn’t have diarrhea. Yes, I just said diarrhea. I can do that, I’m a mom. He does have reflux, but he’s NEVER had the kind where he spits up. Besides, he’s not spitting up… he’s projectile vomiting. I’m not sure what is causing this, but I’m making myself sick with worry. Did he suddenly forget how to eat? Swallow food? Why doesn’t he have an appetite? Furthermore, why is he vomiting…even when he doesn’t eat?

To add salt to the wound, I asked Dr. C to look at Austin’s hair at our appointment on Friday. I’ve noticed some bald patches on the back of his head. It’s so bizarre because they seem to have appeared overnight. They aren’t very noticeable unless you’re really inspecting his hair or when his hair is wet. In fact, I can comb his hair over the spots so that they aren't as visible. I remember reading that people with Down syndrome are at a higher risk for developing the Dermatologic Condition known as Alopecia Areata, which is the term used to describe patchy hair loss which is not due to infection or drugs. The bald patches have distinct borders, with no hair thinning in other areas of the scalp. It is believed to be due to an autoimmune process, meaning the body is making antibodies against hair follicles. People with DS are more prone to autoimmune diseases, such as diabetes, hypothyroidism and celiac disease. Alopecia areata is more common in people with DS, occurring in 5 to 9% of the population (compared to 1 to 2% of the general population). A gene implicated in the cause of alopecia areata has been found on the 21st chromosome


This isn’t a health issue, per se. It’s more of a cosmetic issue. Dr. C referred us to a Dermatologist. She also mentioned that there are creams that the Dermatologist can provide that can stimulate the hair growth. I’ve also read that Alopecia is highly unpredictable. In other words, people with alopecia can have several episodes of hair loss and regrowth during their lifetime. The hair regrowth can be partial or complete, or there may be no regrowth at all. In most people, hair will eventually regrow to some extent within one year

I don’t think this would have bothered me as much had I not been worrying about Austin’s unexplained vomiting and loss of appetite. However, I couldn’t help but think…my son already has Down syndrome. Yes, it makes him different and he will face bullies and judgment because of this. And now…he also has this rare Dermatologic condition that causes sporadic bald spots that may or may not grow back? I guess I just don’t think it’s fair that he has to face another challenge that makes him different and gives bullies another reason to mock him.


I suppose today was one of those days where I focused on negative rather than the positive. It’s hard to focus on the positive when you’re drenched in vomit, cleaning up vomit and trying to figure the mystery behind your child’s inability to eat and unexplained vomiting.

For the sake of advocating, children with Down syndrome can experience or are more prone to the following health complications:


• Congenital heart disease - (heart disease that is present at birth)


• Hearing problems


• Intestinal problems, such as blocked small bowel or esophagus


• Celiac disease (a digestive disease that damages the small intestine)


• Eye problems, such as cataracts (a cloudiness in the lens of the eye)


• Thyroid dysfunctions (problems with the gland that affects metabolism)


• Skeletal problems


• Dementia—similar to Alzheimer’s (occurs in adulthood)


 
Tomorrow is new day. Please pray for my little man.