“Stage 1: I do, you watch, Stage 2: We do together, Stage 3: You do, I applaud!” ~Wayne Cordeiro
THERAPIES UPON THERAPIES…Possible with a Willing and Helpful Family
These last two months have been beyond intense, not only for Harper but also for her entire family; grandparents and aunts included!! We are so blessed that we were able to stack these intensive therapies to see if we could provide Harper with some much-needed help in getting over her therapy plateau. It’s not the milestones we look for, but rather “inchstones” from all of her hard work and efforts that we have learned to appreciate!
No doubt, Harper knows just how much everyone has tried to help her succeed; I only hope someday Lily will understand the importance of these days, and although she had no choice, consider the sacrifice worthwhile. We Love them both “Big as the Sky!” as Lily would say.
Anat Baniel Method, or ABM Intensives
February 2013 began with a week of ABM intensives (Anat Baniel Method) close to home. ABM is about aiding the “brain and body connection”, and consists of 30- to 45-minute sessions, two times per day for five to seven consecutive days.
We found out about this therapy from another CDKL5 mom. In March 2011 we contacted the original ABM center in California and scheduled a week of lessons with Anat and her team. After a successful week we returned two weeks later for another round of sessions during a training program and received recommendations for a “local” practitioner.
Harper has since been receiving ABM lessons over the past two years, a bit closer to home. The idea behind this therapy is to start strong and work up to a maintenance program of once or twice a year as needed. Harper currently gets a 5-day intensive every five to six weeks.
We do see an increase in seizure activity during this type of therapy with retention of knowledge learned.
Therasuit Intensive Physical Therapy
2013 February ended and March began with us in Austin for a 3-week Therasuit intensive therapy session at Little Tesoros. Therasuit is essentially “physical strength training” in areas that are weak, preventing a particular developmental milestone from being met. Therasuit consists of 3-hour sessions once a day for five days in a row for three consecutive weeks.
Many of the parents with higher-functioning CDKL5 kids attribute that category of function to the addition of this form of therapy. We found this therapy highly beneficial for Harper at what we believe to be a critical moment: achieving and maintaining head control.
Simply regaining her strength in her neck to master the skill of holding her head up right will make her ability to communicate through eye gaze much less stressful. At the end of our three-week Therasuit intensive we were given a “Home Program” to help Harper continue to gain strength in the arm, back, chest and neck areas where she is weak. With this therapy regimen, depending on the child’s skill level, they like to see them every three to four months, working up to once a year. With the increase in physical activity we noticed Harper had a decrease in seizures.
With this therapy being new to our regime it is unsure if that decreased activity pattern will remain the case or if her body was simply adjusting to something new.
Click Here to see Harper’s Home Therasuit Therapy Program
They Call Them INTENSIVES for a Reason
A schedule of any one of these therapies really takes it out of Harper…stacking them in this way leaves her exhausted…asleep before we even get out to the car to go home. She works hard and afterward she rests hard.
GyroStim Vestibular Therapy
Finally, this week we are home and are obtaining GyroStim or “Vestibular Therapy” which is 20-minute sessions, three times per day, for five days. The vestibular system is critical to brain development and most children acquire vestibular movement naturally.
Children like Harper, who do not move much, lack the vestibular stimulation in the brain that is necessary for the next stages of physical and mental developmental progress. Harper’s Hippo Therapy with Pocket at Spirit Horse does provide some vestibular stimulation, as well as providing walking-motion stimulation needed for the hips.
However, with GyroStim we are able to provide this level of therapeutic movement to Harper in a controlled environment in order to stimulate the areas of her brain for intentional outcomes. Vestibular Therapy has primarily been used to rehabilitate professional athletes with brain trauma; some of which we were able to meet this week, like former Dallas Cowboys Randy White, Tony Dorset and Darren Woodson!
This therapy has been a miracle for them and as always we hope for miracles with Harper. With only one week of this new and exciting therapy we are unable to see a pattern of decreased or increased seizure activity during these sessions. The doctor is paying really close attention to Harper’s cues in an attempt to push her but not beyond her seizure threshold.
What Can be Expected from such an Intense Schedule of Therapies?
I do not think any one therapy is better than another for Harper. Nor do believe any therapy is a cure for Harper’s lack of function. What I do believe is that the right combination of therapy at the right time can help Harper to function both physically and mentally at her best and bridge the gap where her body is lacking due to her disorder, no matter what the particulars of that disorder would happen to be.
How do you know what to do and when with your child?
There is no set formula! You don’t know unless you try. Do Not Be Afraid…because that is how we learn what works and what does not. Things have not always worked out for Harper (see the post on No CDKL5 Child Left Behind for an example) but the information gained from it has been hugely beneficial, even despite the painful result of Harper’s complete loss of skills.
Go with what you feel is right and ask for reasons from therapists, doctors, etc..that might disagree with you. If you do not agree with the reason given continue to be the voice for your child. If given the opportunity they will amaze you with what they can actually do!!
As much as we have enjoyed watching Harper’s progress over these last 6 weeks, I am ready for our weeks to return to our “normal.”
Harper’s Regular Therapy Schedule:
Monday Speech/Communication Therapy (Easter Seals North Texas)
Tuesday Occupational Therapy (Easter Seals North Texas)
Wednesday Hippo Therapy (Spirit Horse)
Thursday Aqua Therapy (Plano Presbyterian Hospital)
And Friday Free Time For All!!
