Hypotonia: Part Three: Treatments

Here's the final installment about Hypotonia. I hope that these postings have been informative and helpful for everyone that offers us so much love and support and anyone out there in a similar situation. Sometimes, when someone inquires about Rae's condition it's difficult to find the right words and I hope that these postings have helped.

Treatments

One word: Therapy

Therapy can consist of physical, occupational, and speech either individually or combined. In some cases children may also work with sensory stimulation programs depending on the individual needs of the child.  I wish I could off more, but that's really all we know to do. I've read many parents say they just treat whatever symptoms present themselves at the time and have quit searching for a cause.

Rae's play area complete with exercise peanut ball.

There's no magic cure-all pill, no surgical procedure, no fairy godmother that can change the situation and honestly, that's heart breaking to admit. I struggle with that fact on a weekly, if not daily, basis. We may not be able to "fix" her, but we can make her stronger! That's why therapy is so important.

Rae has physical therapy (PT) once a week for an hour. Some weeks are better than others and we have had progress, but every week is different. During the rest of the week it is up to us (family) to make sure she gets additional therapy. The "routine" varies each day and when we're thrown off our routine it can take a week to get back on track.

We try to show her the proper way to sit up, lay down, roll over, and army crawl.

We make her use her hands to hold her bottle, grab small pieces of food, and reach for toys (even if that toy is your nose).

Beeping Great Grandpa's Nose

 We use a sensory brush (almost daily), peanut exercise ball, various toys, and a sensory box full of unpopped popcorn. 

Using the sensory brush

Working in her sensory box.

These therapy services are provided through the Early Intervention Program (a.k.a. Part C service) which is part of the federal law, Individuals with Disabilities Act (IDEA). We are very grateful that this type of assistance is offered and until I learned about the program I felt lost about what steps we would take after her diagnosis of Benign Congenital Hypotonia. Here are some links that I have found helpful:

• National Dissemination Center for Children with Disabilities - info about Early Intervention
• Early Steps - Florida's Early Intervention Program
• Exercises for Hypotonia - a resource for Down Syndrome that offers info on Hypotonia
• Brain & Gym Exercises - from LIVESTONG
• e-Special Needs - toys and adaptive equipment, Amazon is a good resource if you know what you are looking for and sometimes I just surf for toy ideas.
• iVillage Hypotonia Message Board - parents offering advice and support

With time and patience Hypotonia can get better, but it does not go away and in most cases is life long. From personal experience there is one other treatment I can offer to the parents, family and friends of children with Hypotonia...chill. Just chill. You can't speed up their development to the point they are back on the "normal" course. I drove myself batty for the first couple of months trying to make every moment therapeutic and instead felt deprived of the joy of just being with Rae. Be aware of the day to day opportunities to use therapy, but don't wrap yourself so tight that you forget to just play. Play is an important part of your child's development. So, chill out, sit down, and play.