Toddler with Rare Genetic Condition Improves After Using Otteroo

Abby was diagnosed with a rare genetic condition called RYR1 myopathy. It can cause hypotonia or hypertonia. Abby has both. Now at two years old, she’s made great improvements thanks to the Otteroo. Her mom, Candice, told us about Abby’s experience.

It’s been extremely helpful for her limbs and giving them greater flexibility. Also, body awareness.

What symptoms does her condition cause?

Initially when she was born, she was so stiff you couldn’t move any of her extremities. Changing her diaper was difficult. We couldn’t get her hand to open. Her upper extremities really were in a bent position. A lot of therapy involved just kind of loosening up all of her muscles and giving her an opportunity to relax them. Because they were all at rest. They were always in a hypertonic state.

How did you discover the Otteroo?

I think any mom who has a child with a new diagnosis that is unknown, we dig into communities and online resources of parents who may have had similar children. And at the time when we didn’t know the diagnosis, a lot of the hypertonic kids were promoting a lot of therapy and when I was talking to different therapists about different options, they did mention that aquatic therapy is really helpful.

I remembered a couple of my friends who had normally developing children, they had used the Otteroo before. And I thought that may be a good option for her. And when I went onto your blog, I found that there actually is a community of special needs children who use the Otteroo. It’s been extremely helpful for her limbs and giving them greater flexibility. Also, body awareness.

And when she was in the Otteroo, you could immediately sense her sense of weightlessness in it. And she really just started exploring what it meant to kind of move into certain directions effortlessly.

How has it worked for her?

For Abby, gravity is always fighting against her. You turn to sit up, to stand up, to move a certain limb up into the air to grab something. And when she was in the Otteroo, you could immediately sense her sense of weightlessness in it. And she really just started exploring what it meant to kind of move into certain directions effortlessly.

How did she react to it?

When we put her in initially, she was kind of stunned. Her whole body was kind of in a contracted position. Then as we started helping her bounce off the wall, or just showing her how she can move her limbs, she quickly reacted positively towards it.

It’s helping with her legs, and getting them more loose. She’s using them more purposefully to aid in rolling and turning, and all those important milestones.

Have you noticed any changes in her?

It’s helping with her legs, and getting them more loose. She’s using them more purposefully to aid in rolling and turning, and all those important milestones.

You said that her facial expressions are muted, but does she react in any sort of way when you bring it out or she knows she’s getting in the water?

Her eyes do widen a little bit when we bring it out. And then as soon as we put her in, she just goes. There’s no delay. And then when we tell her we’re taking her out, then she’ll vocalize. To me, she’s telling me no. Because she gets pretty upset, and will cough. And will get stiff. And she has this expression.

The Otteroo allows her to explore different parts of the body and with water pressure limbs and muscles. And I’m very thankful for it. It’s a lot of fun. It’s not just all therapy. She really enjoys it.

Is there anything else you’d like to add?

I think that Otteroo definitely allows families who don’t have the support, or the formal therapy in place to have that. The Otteroo allows her to explore different parts of the body and with water pressure limbs and muscles. And I’m very thankful for it. It’s a lot of fun. It’s not just all therapy. She really enjoys it. And when I visit different therapy places, I see that they’re using the Otteroo too.

Julie Forbes

Julie Kroenig Forbes graduated Magna Cum Laude from the University of Missouri School of Journalism. She spent the next 10 years working as a news anchor and reporter in various cities, most recently in Nashville, Tennessee. After a few years in Northern California and New York, she now lives in Ohio with her husband and four kids.
Julie Forbes

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