Pain in People With Down Syndrome

I have 2 children with Down syndrome. By now, most of you know that. I also speak on behalf of people with Down syndrome and other disabilities... educating society to accept them and treat them as individuals, NOT as their diagnosis. You probably know that too if you've been reading my blog.

Recently, some medical articles have been circulating amongst some of my friends whose children also have Down syndrome. These articles relate research undertaken to show that "people with Down syndrome experience pain but they express it slowly and not as precisely as the general population." That is, they have delayed and non-specific sensations relating to pain. Or, more specifically, people with Down syndrome appear to feel less pain but actually feel delayed pain and cannot localize or express the pain efficiently. This results in less intervention for pain management on behalf of the pain sufferer. They suffer in silence. The studies were done with 26 individuals with Down syndrome and 75 "healthy" volunteers. Cold stimuli were applied to the wrist and temple, and hands, face and mouth of study participants. Those with Down syndrome reacted in apx. 29 seconds and had difficulty identifying specifically where the cold stimulus was applied, while those without Down syndrome reacted in apx. 20 seconds and could identify the locale of the cold stimulus. As such, medical professionals and parents/caretakers of patients with Down syndrome should be aware that specific pain management techniques may need to be administered in situations where pain would be expected (i.e. post-surgery). Pain management should be addressed despite such patient's lack of, lesser or non-specific expression of pain. Information that should be passed on to the parents and caretakers of and Pediatricians treating children with Down syndrome.

Now, I'd like to make a few personal points regarding these articles:

First, as the parent of 2 children with Down syndrome, I take issue with the use of the word "healthy" when it's used to describe the non-DS research participants... insinuating the study participants with Down syndrome are inherently un-healthy. Perhaps it's just a poor choice of words but, I take issue with the notion that people with Down syndrome are not "healthy". An individual with DS can be as healthy as those without DS despite their extra chromosome. Healthy, according to Webster, means "enjoying sound overall condition of the body". Let me assure you, my boys are healthy and they have Down syndrome.

Second, these studies raise enough questions about the generalized conclusion that additional research with this population is definitely warranted. For instance, the studies used 26 individuals with Down syndrome and 75 without DS. Were the 26 individuals with Down syndrome "typical" of this special population? In a "typical" population of 26 people with Down syndrome, 80% or 21 of those individuals, would have had the heart defects that typically accompany a diagnosis of Down syndrome. And, additional medical conditions may occur -- but are not necessary -- amongst people with Down syndrome as well. If the research group studied was statistically "typical", is a population of 5 without heart defects a sufficient number to draw generalized conclusions against? And, were these results different from the 21 with heart defects? What about representation of the other medical conditions? For that matter, are 26 people with Down syndrome truly representative of the DS population?

Additionally, were there differences in response between those who are more affected by Down syndrome cognitively versus those less affected? Is the result a function of the physical affects of Down syndrome -- delayed pain signal relay -- and are there differences between more and less physically affected individuals? Or, are the results related to high or low mental acuity -- recognition of the pain signal -- in people with Down syndrome? And, is additional research warranted comparing people with similarly affected levels of mental acuity with and without Down syndrome (individuals with MR vs. DS who test at similar IQ levels)? Finally, is cold stimuli really received the same as pain?

Third, as I read these articles with interest, I found that the conclusions did not necessarily apply to my boys. When Brian and Michael taste something hot -- stimulus to the mouth, as in the study -- they react IMMEDIATELY by saying "OW, HOT!" quickly opening their mouths and spitting out the too-hot food... just like you or I would do. They do the same thing when they step into a too-hot bath... immediately jumping out and saying, "Hot". When they go to the MD and get a shot or two, they react immediately and stop reacting when the shooting is done. Consistently, my boys have tugged on or tapped their ears saying, "ouch" indicating an ear infection -- ultimately diagnosed by the MD. Headaches, although they don't call it that, are indicated by holding their heads by their temples and saying, "ouch" and sinus pain is indicated similarly but covering their eyes or rubbing beside their noses/beneath the eyes. Further, when either boy gets his finger caught in the cabinet door, accidentally stepped on or injured in some other way, their reaction is also immediate and specific. They say, "Ouch", and come crying to Mommy to kiss the finger that was hurt. Change the location of the painful stimulus and they will react by telling me what part of their body they need kissed -- head, toe, eye, arm, nose, finger, back, face... you name it, they'll identify it specifically. I know that they know exactly where they got hurt too because if I kiss the "wrong spot" they continue to point at the specific injured spot (as evidenced by the red mark) until I get it right. And, they do all of this absolutely no slower than my daughter without Down syndrome does.

Please note that none of my points outright negate the conclusion of these studies. And know that there have been plenty of times when I thought maybe the boys weren't feeling so well or were limping but they didn't or couldn't express illness or injury to me. I assumed it was a language barrier versus a pain-interpretation barrier. As such, I have occasionally treated them with Tylenol or other OTC medications for general malaise or brought them to the Pediatrician based on their behavior (in the absence of fever or other outright signs of illness or injury).

Since I can't think of an ethical way to test specific pain or the tolerance of pain in humans, I'll never know whether my boys feel pain the same way I do. As such, these results are useful to keep in mind when treating my boys, or anyone with Down syndrome, for pain conditions. However, we must also acknowledge that these generalized results may not necessarily generalize to everyone in the Down syndrome population. We certainly don't treat everyone diagnosed with cancer the same way. Treatment depends on their type of cancer, location of the cancer, age and general health of the individual. Each case is handled individually. Likewise, INDIVIDUALS WITH DOWN SYNDROME SHOULD BE TREATED AS INDIVIDUALS WITH SPECIAL CONSIDERATION FOR THEIR SPECIFIC DIAGNOSIS AND IT'S SPECIFIC MANIFESTATION. It is how I would want to be treated.