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Because of his Angelman Syndrome, Owen can’t speak. When he’s hurting or sick, he can’t tell me what’s wrong.
And he doesn’t usually have the control over his body to point to what’s wrong.
Which means trying to figure out what’s wrong when he’s hurting or sick can be a challenge. We’ve got to examine all the evidence, work through the process of elimination, and make the best possible guess that we can.
And unfortunately, we aren’t always right. Sometimes he stumps us. And the doctors. So we have to wait for another symptom to develop or another clue to present itself.
When your child or baby who can’t speak gets sick, you may feel like you’re on one of those “Medical Mystery” dramas. Except you don’t have the assurance that you’ll wrap up the problem neatly before a forty-five minute episode ends.
Here are some of the steps we use to help us solve the mystery when Owen comes down with an unknown ailment. We start at the beginning and move on down the list as needed.
Assess the Situation
When we realize something is wrong with Owen, we throw our senses into overdrive.
We look him over, checking for any obvious signs of injury.
We listen to his breathing (he often chokes on foreign objects, which causes an awful breathing noise).
I give his nose a quick sniff (a sure sign that something is stuck up there).
I ask the kids if anyone saw anything or noticed anything.
Owen has epilepsy. His seizures are typically absence and drop, but he has had other types throughout his life. So we use our knowledge and experience to try to rule out an active seizure.
Of course these different seizures are almost always brought on by stress to his body from injury or illness. So we may not be any closer to solving the actual problem. But, we do have a solid plan in place for dealing with breakthrough seizure activity.
Owen, like most individuals with Angelman Syndrome, LOVES water. So, if we still haven’t seen anything obvious, we put him in the bathtub.
This often will perk him up and when he gets out, he’s back to his happy demeanor. If this is the case, we continue to watch him to see if he’ll develop additional symptoms, or give us any other clues.
But when something is really wrong, water won’t cheer him up. So we pull him out and get him dried off.
At this point, we do a more thorough check of Owen’s body. We look for slivers (he gets these in his legs and arms a lot and they become infected if we don’t notice them right away), rashes, cuts, bruises, and anything that might give us a clue.
We also stand him up and see if he’ll put weight on both legs. This is because he has pretty weak bones and has had a couple of broken bones in his legs that the only symptom were lack of bearing weight.
The Food and Water Check
Once we’ve determined there’s nothing wrong that we can actually see, we get Owen some food and water. I want to make sure he can eat and drink well.
This has helped us discover a sore throat, and an object stuck in the back of the throat.
If we still don’t know what’s wrong, we typically bring in the doctors to try to help.
It’s so important to have a doctor for your special needs child who values your opinion as a parent. You also should make sure the doctor meets your child when he is doing well. This helps establish a baseline.
Often we can bring Owen into his doctor, who takes one look at his behavior and says, “There’s something going on…”
He’s seen Owen long enough that he knows what’s typical and what’s not. He is also always willing to listen to what we’ve noticed, what we’ve tried, and what we suspect.
Typically the doctor starts with the obvious. He checks Owen’s ears, nose, and throat for any obvious symptoms. Owen used to have a TON of ear infections, so this is a good place to start.
If nothing is found, we typically move onto urine and blood tests to look for infection. The doctor has a pretty good record of Owen’s normal white blood cell count, so he’s really good at noticing when it’s elevated even if it’s not technically outside the “normal” range.
Because of Owen’s Pica, he’s at high risk for foreign objects getting stuck, and for a rupture in his intestines.
Since those are both life-threatening problems, x-rays from nose to rectum are one of the more frequent tests doctors use.
Wait and See
Usually by now we’ve discovered the problem. If not, the course of action we usually pick is to wait and see. This gives us time to see if any new symptoms develop, or if Owen will indicate pain by pointing or favoring a certain part.
It Can Be Frustrating
Not knowing what’s wrong with your child can be frustrating! Especially when they can’t just tell you what’s wrong.
But, they are counting on you to be their advocate and try to figure it out, so it’s worth it. If you have a child in this situation, I’d definitely recommend coming up with a plan of sorts to help you narrow down the problem.
What are your tips for discerning what’s wrong when your child can’t tell you? I’d love for you to share in the comments.