Assembling a Team

Yesterday a new tutor had her first session with V. I was hopeful. For the first time I did not feel that I had to  hire anyone who would take the job and I did not feel that I had to rush the decision to hire. I had many qualified applicants and I had learned from past experience with other tutors and therapists what qualities made a tutor successful or unsuccessful with V. I slowed the hiring process down this time. After reviewing the online resumes, I had a face to face meeting and had a prepared list of questions that had not been addressed in the resume. After that, I still did not make a job offer, but instead I asked the applicant to return to meet V and observe a speech therapy session to see how a successful therapist works with V, to see her capabilities and to ask questions. Only after that second meeting did I ask the applicant if she felt that the job was a good match, knowing that she now understood what to expect from V and what my expectations of her would be.

 I had learned that it is important for anyone who comes to our home to work with V to be well prepared with a variety of activities. Sometimes V will reject an activity that does not interest her, other times she will complete an activity more quickly than anticipated. It can cause an episode of agitation if a therapist or tutor continues to offer a rejected activity because they have nothing else to offer or because they want to force the issue. Knowing this from prior experience allowed me to share this knowledge with the new tutor.

I had learned that if V becomes tense, it is important to offer her a break and to give her some physical
space until she is ready to resume work. It is important to read her body language and verbal cues and respond to them to avoid triggering an episode of agitation. Again, I was able to communicate this to the new tutor.

V likes to work with someone who is cheerful, relaxed, low-key, confident and who goes with the flow. She does not like someone who talks too much, too fast or nervously. She does not like someone who is inflexible, unresponsive to her communication and body language, or someone who is unprepared. Knowing the her personality and behavioral preferences makes it easier for me to look for someone with the right personality who can connect well with her. Credentials don't matter if the specialist doesn't relate well with V, or if they just get on her nerves.

All of these things seemed to make a difference. For the first time in 4 years of self directed services, V worked a full hour, cooperatively and with no behavior incidents, in her very first session with the new tutor. This has already become the norm for her time with her speech therapist and her occupational therapist. She has learned to give an hour of her attention and energy to a specialist almost every weekday afternoon, and I have learned better hiring skills. This time I used Craigslist and I used the the local teacher's chat room on the county's school system website. I had to have a local teacher put my advertisement there for me, but it got a lot of responses.

I am thrilled with the team of specialists who are working with V now. With her cooperation, they are all able to help her make progress. 

Enhancing Treatments for Neurological Conditions

Here is a report of a new type of treatment that improves the effectiveness of training and rehabilitation in people with brain injuries or disorders.

Research Shows Nerve Stimulation Can Help Reorganize Brain

Jul. 19, 2012

Dr. Michael Kilgard helped lead a team that paired vagus nerve stimulation with physical movement to improve brain function.

UT Dallas researchers recently demonstrated how nerve stimulation paired with specific experiences, such as movements or sounds, can reorganize the brain. This technology could lead to new treatments for stroke, tinnitus, autism and other disorders.

In a related paper, UT Dallas neuroscientists showed that they could alter the speed at which the brain works in laboratory animals by pairing stimulation of the vagus nerve with fast or slow sounds.

A team led by Dr. Robert Rennaker and Dr. Michael Kilgard looked at whether repeatedly pairing vagus nerve stimulation with a specific movement would change neural activity within the laboratory rats’ primary motor cortex. To test the hypothesis, they paired the vagus nerve stimulation with movements of the forelimb in two groups of rats. The results were published in a recent issue ofCerebral Cortex.

Dr. Michael Kilgard

After five days of stimulation and movement pairing, the researchers examined the brain activity in response to the stimulation. The rats who received the training along with the stimulation displayed large changes in the organization of the brain’s movement control system. The animals receiving identical motor training without stimulation pairing did not exhibit any brain changes, or plasticity.

People who suffer strokes or brain trauma often undergo rehabilitation that includes repeated movement of the affected limb in an effort to regain motor skills. It is believed that repeated use of the affected limb causes reorganization of the brain essential to recovery. The recent study suggests that pairing vagus nerve stimulation with standard therapy may result in more rapid and extensive reorganization of the brain, offering the potential for speeding and improving recovery following stroke, said Rennaker, associate professor in The University of Texas at Dallas’ School of Behavioral and Brain Sciences

Dr. Robert Rennaker

“Our goal is to use the brain’s natural neuromodulatory systems to enhance the effectiveness of standard therapies,” Rennaker said. “Our studies in sensory and motor cortex suggest that the technique has the potential to enhance treatments for neurological conditions ranging from chronic pain to motor disorders. Future studies will investigate its effectiveness in treating cognitive impairments.”

Since vagus nerve stimulation has an excellent safety record in human patients with epilepsy, the technique provides a new method to treat brain conditions in which the timing of brain responses is abnormal, including dyslexia and schizophrenia.

In another paper in the journal Experimental Neurology, Kilgard led a team that paired vagus nerve stimulation with audio tones of varying speeds to alter the rate of activity within the rats’ brains. The team reported that this technique induced neural plasticity within the auditory cortex, which controls hearing.

“Our goal is to use the brain’s natural neuromodulatory systems to enhance the effectiveness of standard therapies,” Dr. Rennaker said.

The UT Dallas researchers are working with a device developed by MicroTransponder, a biotechnology firm affiliated with the University. MicroTransponder currently is testing a vagus nerve stimulation therapy on human patients in Europe in hopes of reducing or eliminating the symptoms of tinnitus, the debilitating disorder often described as “ringing in the ears.”

“Understanding how brain networks self-organize themselves is vitally important to developing new ways to rehabilitate patients diagnosed with autism, dyslexia, stroke, schizophrenia and Alzheimer’s disease,” said Kilgard, a professor of neuroscience.

Treatment of neurological disease is currently limited to pharmacological, surgical or behavioral interventions. But this recent research indicates it may be possible to effectively manipulate the plasticity of the human brain for a variety of purposes. Patients then could benefit from brain activity intentionally directed toward rebuilding lost skills.

If subsequent studies confirm the UT Dallas findings, human patients may have access to more efficient therapies that are minimally invasive and avoid long-term use of drugs.

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Media Contact: Emily Martinez, UT Dallas, (214) 905-3049, emily.martinez@utdallas.edu
or the Office of Media Relations, UT Dallas, (972) 883-2155, newscenter@utdallas.edu

Trying the NAC

So many new treatments that I read about, that show promise, require prescriptions and are still years away from FDA approval. NAC is not a medication. It is easy to acquire without a prescription, from the same source that was used in the original study. While the study was quite small, I found the results to be impressive. This is something I can try, with the risk of only some digestive upset, to help the irritability that plagues Valerie. Here is the link to the original article about NAC as treatment for irritability in people with autism; http://www.ucsfcme.com/2012/slides/MOC12001/OHANLONarticle.pdf
I purchased the same PharmaNAC effervescent tablets online from BioAdvantex Pharma, Inc.  The website is www.pharma-nac.com  .  It was $18.50 us dollars per box, plus shipping for 20 tablets. The shipment arrived within a couple of days. I started Valerie on one tablet in the morning a week ago. The first day I tried dissolving it in water, since the box says it is wild berry flavored. She took one sip and pushed it away. I added a flavored drink to the water and she drank it all without incident. The first day she had a little upset stomach once in the  morning, but has not had any problems with that since. I would say that, at 900 mg, once a day, she has been calmer and less irritable than normally, so far. After only one week, I am encouraged, but it is still too early to tell if the good week is because of the NAC or merely a coincidence.
In the study, they used one tablet a day for 4 weeks, then increased to 2 tablets a day for the following 4 weeks, and finally 3 tablets a day for the 3rd four week period. The increased doses did bring lower incidents of irritable behavior, but not as dramatic an improvement as the first two weeks did. Given the cost, and the fact that it will not be covered by insurance since it is not a medication, I am not sure I would commit to more than one tablet a day for the small improvement it might offer. I will have to wait and see. After one week, I see no downside to this treatment other than the cost.
The warnings on the package say that it has not been tested on adolescents under the age of 18, and warn against dosing in combination with dairy products. It also says that bedtime dosages will not interfere with sleep.

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