In short, a person with hypotonia is floppy and like a rag doll. Muscles are soft and doughy. There is no tension, no resistance in the muscles. Imagine picking up a child who is in a deep sleep. This is what a child with hypotonia feels like in your arms.
The tone you have is the tone you are born with. You cannot change your muscle tone. You can exercise and develop muscle strength, but a person with low tone will always have low tone. Hypotonia is not a diagnosis in itself; it is almost always a symptom of a more serious condition. Central-based hyptonia (the type M has), originates in the brain. Seeing a neurologist is the next logical step.
Mr. A and I sat in the office with M waiting for the neurologist to enter. He came in and sat down at his laptop and started reading M's file. He didn't say hello. Didn't introduce himself. Didn't glance in M's direction.
"Why are you here?" he asked, eyes never leaving the computer screen.
"Well, our pediatrician said he has hypotonia and the neurologist at Children's thought he might be having focal seizures and he's developmentally delayed."
He looked at me. "And?"
"Well...naturally we thought since M has all these neurological things going on, we should see a neurologist. Do you think...." I was cut off mid sentence.
"I will ask the questions." He continued to read M's file and then measured M's head circumference. He pulled M to a sitting position and checked his reflexes. He asked what milestones M had or had not reached. He asked about family history. Finally he said he could order an MRI of his brain and added, "But perhaps you should wait until he is older since he had some trouble with the anesthesia."
"Okay....what else can you tell us? What do we do now? Do you know what is wrong with M?"
"No, I do not know what is wrong with your son. You should continue with therapy. Talk to your pediatrician about getting an MRI. The biggest concern now is for his cognitive abilities. Ninety percent of people with mental retardation have hypotonia. I cannot say if your son will ever walk. But my guess is not before age five and not without a walker. Follow up in a year."
This time, I cried the entire way home. I called the pediatrician. "We'll be needing the name of a different neurologist."