s/o -- Caution on Hypotonic Children

[Purple Cat]

I was thrilled to read how many children with hypotonia responded so well to PT and OT to the point they were discharged from therapy in the related thread. I wanted to share our experience, though, because I wish I had known this before being discharged from therapy.

My son could not lift his hands to midline and laid plastered on the ground. He had FTT and myriad eating problems. He started OT at 3.5 months adjusted, picked up PT, and I worked assiduously with him at home. He is a very determined little guy, and ended up walking at the equivalent of 12.5 months. PT discharged us.

During some EI meeting, maybe a year later, I requested that he be evaluated for PT again because he slumped while sitting. On re-evaluation, he tested as far more delayed percentage-wise than initially. He hadn't met new developmental expectations. The evaluating PT said it is not uncommon for these children to require PT to meet each new developmental stage.

I wish I had known that. I would have had him re-evaluated every 4 months, 6 months, or so, so that we could make sure he was meeting new developmental expectations.

The strides these kids can make are wonderful, but I wish I had known that not all of these kids can continue to make progress on their own.

[Wild Lupine]

Thank you for sharing your experience. My son is doing wonderfully with the help of PT and OT. If he is discharged soon I will make sure to monitor his progress.

[sbgrace]

My son was discharged at 20 months and had been caught up in terms of milestones for a long time. He was back in at 2.5. He caught up again (except jumping). He was back in at 4.5 (give or take) but for a short time to learn to pedal a trike, work on his balance, work on steps/ladders--that sort of targeted stuff. The PT thought his issues weren't strength but a combination of lack of confidence and issues with coordination. I think she was right based on his quick progress.

I guess I'm saying an "us too" in terms of experience and agreeing that you keep watching.

[ladonnaken]

Yep, my middle child is hypotonic; he was discharged once he began walking (at 16 months old). But by age 3, I began wondering about his speech delay... He's in ST and OT now....his dev. stage needing OT help is pencil grip (he's scoring 20 months delayed). His occupational therapist told me that he may struggle all his life...that the weakness never disappears, but lots of deliberate exercise (or therapies) will make it much better as he grows.

[mommy2maya]

my dd is 20m, and she is also hypotonic. She walked at 16m. She is still in PT, and her pt has no plans to discharge her anytime soon, for JUST this very reason. She will work and work and work and reach a goal, then plateau for a long time, rinse repeat. She's also getting OT and ST.

[APToddlerMama]

Same with my son who has mild hypotonia. He's 21 months and has just been discharged from PT for the 3rd time...I expect to be back though.

[betsyj]

Interesting. My son has congenital hemiplegia and though he is now developmentally close in gross motor skills (he is taking up to 20 unassisted steps at almost 20 mos) they are talking about PT and OT to continue for years.