Jennifer Rackley Jennifer Rackley's Blog

AR and Hypotonia? Early Intervention helped Ella!
Ella is our youngest acid reflux baby. When she was an infant it became pretty clear that her development in regard to gross motor skills was not where it needed to be for her age. We just kept thinking that surely next week she will pick some of these things up. She just needs more time...

Those weeks turned into months and it became obvious Ella was not going to get where she needed to be without some intervention. Ella's pediatrician diagnosed her with hypotonia, which is simply the medical term for low muscle tone. Not the low muscle tone we joke about when we are out of shape but muscle tone that was so low she was unable to walk or stand.

At one she could barely support her trunk well enough to sit for extended periods. By 18 months she still could not pull up to standing and was no where near being able to walk. It is hard to face the fact that your child is not doing the "normal" things at the "normal" times. For me it was doubly hard because her twin sister was doing all of those things. It was devastating to see Ella left out of a lot of the activities because she was physically unable to participate.

Through the help of PAGER, Jan Gambino and a family member who works for DHS we were made aware of the Early Intervention program in our state. Ella qualified as high risk because she is a multiple so they evaluated and placed her immediately. The physical therapist that worked with Ella was the first to give us hope that she would walk!

Ella did eight months of physical therapy. Progress seemed slow at times and then all of the sudden she would pick up several new skills at once. The day before her second birthday she walked several steps in a row into my arms. There were no words to describe how happy I felt at that moment.

At three you would not know, unless I told you, that Ella had motor delays. She might be a bit slower at running and clumsy at times but she is closer to her peers in skill level than she has ever been in her life! She still carries some "baby fat" because she walked so late but at this rate that will be gone soon as well.

You may be wondering what this has to do with acid reflux. I can't give you a clear cut answer on that. What I can tell you is that I have talked with a lot of parents with identical stories. Their acid reflux baby has motor delays. It may be that there is an underlying condition that caused both diseases or that the low muscle tone itself caused both issues. As far as Ella is concerned we just don't know. She has done so well that we opted out of the invasive muscle and neurological testing.

I have had to learn to be content with the fact that we may not get an exact reason for any of these struggles. I have a lot of my own theories but they are simply just... theories. What I do know is that early intervention is essential in providing the best outcome for any child with delays. If you feel like your child is behind in any area of their development discuss it with your pediatrician. There are programs that can help if you are uninsured or unable to afford the therapies.


Check with your
doctor first!