Monday, February 3, 2014

3 Year Old Diagnosed with Hypotonia (Low Muscle Tone)

On Thursday my active 3 year old (who turns 4 in March) was diagnosed with hypotonia or low muscle tone in his mouth, fingers, and core.  I could not have been more shocked!  I didn't even talk about it on twitter until the weekend because I just could not believe it. I mean, I believed it, but I couldn't get over it. He's so active! He loves to run, jump, ride his bike and all sorts of normal little kid stuff. How could there be something wrong with his muscles?


Active Boy
The diagnosis came about because although we'd always noticed some issues, they seemed minor and waiting always seemed to be the right course. I half suspected he had ADD or something and I know that cannot be diagnosed in very young children. But recently, everything just came to a head. He had been having some trouble in school.  I knew of some trouble through parent/teacher conferences, but when I was given the notes at our child study I realized the teacher had only given us a glimpse of what was really going on. Apparently he had never made it completely through circle time, and when doing crafts at the table with a group he would get distracted and begin doing his own thing instead of the assigned task. In fact, he would ONLY complete his work when working one on one with the teacher. In addition to classroom troubles we were having a terrible time potty training. Gabriel is nearly 4 and if diaper-free he can't tell if he's had an accident.  When in diapers, before I take off his diaper I ask him if there's poo or peepee in there.  He makes a complete guess, and then we look to see if he's right.  He's always had difficulty in unstructured social situations like birthday parties, but recently it's been all the worse because he just seems too old to still be throwing tantrums.  It was time to do something.

"Mommy! Look! I brought chocolate cake to my bed!"
I first considered meeting with our pediatrician, but my DH insisted there was nothing wrong with him. All three year olds have issues and these were his. Harumph. I've since learned it's extremely common for men to have trouble acknowledging any health issues in their sons. Then we had another teacher conference in January, and she offered an evaluation through the public school system. I didn't know that was possible since we take him too a large church school, but apparently there is a child study committee that evaluates any child within the school district who may be eligible for SPED services. We decided to do it. I filled out the paperwork on a Friday and he was evaluated the following Monday! Fast! A wonderful evaluator came to the preschool and observed him in the classroom and worked with him separately. I went to a meeting with the entire child study committee the following Thursday. The committee was made up of a child psychologist, a speech therapist, early childhood educators and a SPED early childhood educator. I thought it would be intimidating, but it was such a small room and we were at a round table so I felt very comfortable.

I'll share the highlights from the report. "Gabriel had a hard time cutting anything but a straight line and kept snipping the paper instead of cutting. He also had a hard time manipulating his fingers when touching fingers to thumbs. He had to use one hand to manipulate the other to do what he needed to do. When copying figures, he was unable to do any except for a circle and straight line. He held his hand on the upper 1/3rd of the writing instrument and had a modified tripod grasp that was very weak..." You get the idea. He didn't have any strength in his fingers. 

They said they thought all his behavior issues were due to very low muscle tone in his mouth, fingers, and core and at first I just couldn't accept this explanation. How could this be? Surely I would have seen it. They asked me if he had a weak suck as a baby. I recalled that I had to nurse him with a nipple shield for two years because he wouldn't latch no matter what we tried. I remember that he refused straw sippy cups and wouldn't take anything except 3 month sippys until he was over 24months. He still drools excessively and doesn't feel that his chin and shirt are wet. They asked me if he had trouble with silverware, held cups with both hands, and did I still spoon feed him on occasion. Yes, yes, yes. Did he lay on the floor a lot when playing with toys, did he refuse to sit upright on the floor for extended periods at school? It went on and on. It was like they'd known him for years.

Abnormal to only be able to operate a
bulldozer if resting on stomach?

I took a few days to digest the news and then hit the interwebs to do research, except we didn't have any internet this weekend. ARGH! Anyway, I was able to at least do a little research on 3G and found this helpful article on The Pediatric OT, and I joined a moderately helpful facebook group on the subject.  It seems this is a pretty fixable problem and usually treated with physical and occupational therapy for at least a year. He starts pre-k next school year, so my goal is to have him within the normal or average range before kindergarten.  It's only been a few days since his diagnosis and I'm already frustrated at the slow pace of the system. I want him in therapy NOW! At the suggestion of the committee, we have an appointment with our pediatrician tomorrow to discuss everything. I understand the standard course of action is a referral for a full neurophysiological evaluation.  How long before that happens? How long afterwards does therapy start? So many unanswered questions at the moment and I'm feeling so impatient! Simultaneously to the medical route, he will get an evaluation from the city's child occupational therapist and then we'll meet with the child study committee again mid-feb. I'm hopeful that he will at least be able to get therapy through that avenue while we wait on things to get started via the pediatrician. Right now there's a lot of waiting.

Another active shot
That leaves me to do as much as possible with him at home.  He's already been taking gymnastics every Saturday and I'm thinking about swimming lessons. As I've slowly tried a few different things this weekend I'm left feeling more proud of my son than ever. As I try certain recommended exercises with him and later realize he's too weak to do them, I realize how far he's come at such a huge disadvantage! He's so active and good at sports despite no core muscle strength! He's done well in his first and second year of preschool with no therapy and no finger strength.  Considering his disadvantage, he's had very few problems.  He's such a happy, friendly, and eager to please child and I really think he'll do wonderful in therapy if we can ever get started.