I treat a mostly non-verbal young man who has moderate-severe low muscle tone.
Yesterday, he was his usual, cheerful self. And he could barely move.
Nothing that usually motivates him worked. He wasn’t feverish, visibly ill, or in pain. This young man was smiling and happy to see me. He is taking a new medication, and has a raft of other medications he has been taking for months or years. It has been much hotter and stickier this month. The effects of heat on low tone are understood by his family, if not his teachers. Helping Children With Low Muscle Tone Manage Summertime Heat. He spends a lot of time in the A/C on days like this. But I had seen him on hot days. This wasn’t it. His mother was at a loss. So was I. What could this be?
And then we took off his shirt. He had a circular bandage on his upper arm, covering the site of a vaccine injection.
Everything changed.
Most healthy adults anticipate that after a vaccination they will feel a bit “off”. For some people, it is a lot “off”. Our immune systems recognize that they are being asked to gear up. All of this is normal. It lasts a day or two at the most. And then we are fine.
For non-verbal kids with significantly low muscle tone, vaccination can turn them to stone. Concrete, even. The lethargy that we feel after a vaccination; they feel it profoundly. The changes in balance or focus; they also can feel. These kids cannot understand what has happened or anticipate it. They can’t even describe it to us. Special needs kids won’t show clear signs of illness after vaccination…because they are not ill! Their immune system is doing its job and responding in ways that are expected by healthcare providers. This mom got no warning to expect this from any of her specialists. She wants to protect her fragile son from illness. This is why she got him vaccinated.
When I explained the basics of the response to vaccines, and how the combination of extreme heat and humidity intersected with this response, she was so relieved! She understood that if his reactions changed, she should contact his doctor. It would be more likely that he would look very different in 24 hours.
What can be done to change this?
It would be great if the parents of hypotonic children one got a manual on how their kids will react and respond to medical care. It doesn’t exist. A lot of information is shared on social media. Some of it is accurate. Much is not. This mom was going to sleep better that night, knowing that there was a reasonable explanation for what she was seeing. We both knew that other people would blame her son’s attitude, his limitations, even his parents, for his behavior. That is unfortunate. Giving another rationale that is based on his medical condition of hypotonia would not always be preferable to blaming him. Special needs kids and their parents are blamed and shamed all the time.
Not this time.
Followup: My client was fine the next day. And even more cheerful the following session. He is still struggling with the heat and humidity. Me too!
