Saturday, November 20, 2010

The Importance of Therapies in Rett Syndrome

I know that there are many new parents that read our blog. What I mean by new parents are the parents of newly diagnosed girls. Because we had no where to go and almost no personal, from a parents point of view when we were diagnosed I occasionally like to put out informative information in between all my whining and bragging.

I just cringe when I think of the info that was out there for us not so long ago and it was all very doom and gloom and no happiness or future to it. I have been told several times that Abby is incredible as far as Rett Syndrome girls go. I truly believe it is because of my persistence and sometimes annoyance to her docs,caregivers and therapists. I have always had the move it or lose it attitude when it comes to Rett Syndrome and I totally still believe that.

I have,over the last 4 years met many many families and many many girls and I can tell you that Rett Syndrome hits every girl differently. I have met wonderful little girls who's bodies just won't work for them at all. I have met girls who walk,talk,run and have conversations while wringing their tiny hands. These girls are few and far between and mine is not one of them.

Early,very early, in our diagnosis I had one of the wisest and most experienced RettMoms there are tell me, and I quote,"Don't spend her entire life in therapies trying to fix her because it just won't work. Let her enjoy what life she has." Love ya lady but Bullcrap! Some of Abby's favorite things to do in the world are therapies and with the therapy through play attitude that everyone has taken on it is not as much work as it used to be. So I am going to go over the recommended therapies for Rett Syndrome. How we do those therapies and I am going to try very hard to get as much video as I can on each in the next few weeks. Abby's school doesn't allow video taken in her school so for those therapies I may take new video or use some we already have.

The Importance of Therapies in Rett Syndrome Repetitive therapies help dendrites form more connections with other neurons (neuronal plasticity) In Dr. Djukic's words, "Neurons that fire together wire together." Therapies that have been demonstrated to help individuals to access their environment include:
Occupational therapy
Physical therapy
Music therapy
Communication therapy
Speech therapy
Applied behavioral therapy

Therapies help neurons to create new connections . New connections help to increase motor skills. Coordination, balance, and motivation to try new tasks are proven benefits. Therapies contribute to an enriched environment for individuals with Rett syndrome No loss may be progress - Therapies stimulate the neurons and they are helpful. Unfortunately, when girls are in transition and struggling with multiple physical issues, progress is hard to see. Goals are not met, and services are lost. It is important to help other professionals understand the dynamics of the syndrome and the need to keep moving and stimulating. Proper instruction and a plan between teacher, doctors, and treating therapists are valuable.

So here we are. Words from one of the best Rett Neurologists in America. Today I will start with Hippotherapy. Don't let the name fool you. She doesn't play with or ride Hippos and I would be too busy having a heart attack to video it for you if she did. Hippotherapy is Horseback Therapy. Many will try to influence you not to do this one and I can tell you that it is the most valuable thing we have in our arsenal as far as regaining balance,trunk control and strengthening her core muscles. Many many areas have programs that are free of charge for the disabled or a local Horse association that will split the costs with the family. Ours charges $40.00 a session and a local Horse Association (The American Royal) pays for half of that. So for a 6 week session we pay $120.00 When we first started Hippotherapy I was so scared for her because I am the biggest chicken in the world when it comes to horses. They absolutely terrify me and I have only been on a horse twice in 40 years. Enough for me. The first few times Abby got on she would not even hold herself up on the horse so they would ride with her laying on her back or laying on her stomach. By the 4th week she was sitting up on her own.

What does Hippotherapy do? Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada. Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities. Why the Horse? The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.

So the video..I don't have great video but I do have some so here ya go..Here she is last Thursday winning an egg race. There is ALWAYS a person on each side and another leading the horse.


The MacDonald Family said...

I agree. Annie LOVES therapy too, she gets pretty angry with us if we don't help her move around enough during the day. Keep up the great work momma!!!

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