Family Matters

An IRSF Family Advisory Board (FAB) Publication

November 21, 2008

Therapy: What's your advice?

Our topic this time is "How Much Therapy?" so please share your stories and do respond to the following questions.

How old is your child and how much therapy does she/he receive? Have you ever decreased the amount of therapy because it was too much? Is your child making progress with the current level of therapy?

Kenna's daughter Rachael is four years old, has never walked, and has virtually no purposeful use of her hands. Part of the difficulty in diagnosing her was the lack of regression (although now looking back, Kenna knows there were clearly things that Rachael can no longer do) because she had no progression.

"We have not given up hope that she might someday walk, we would like to see her have some use of her hands, and, of course, communication is very important. I know that there are families with girls Rachael's age that have hours of therapy a day and there are others that have less. "

If the goal is to teach her to walk, how many hours of physical therapy should a four-year old receive each week? How many hours of occupational therapy? How many hours of speech/communication therapy? Then, say at age eight, what are the optimum hours of therapy each week. And age 12, 16, 20, and into adulthood?

We know about all the benefits of therapy, movement, and exercise, but is there a certain amount of therapy in each of these disciplines that seems to work best for girls with Rett Syndrome at their various ages?

So, we'll look forward to hearing from you, our Rettnet experts.

Please reply with your comments to: rettnet@home.ease.lsoft.com.

Kenna (Rachael's mom), Jane, Sherri and Dan for the Information and Communication FAB subcommittee

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