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Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.

This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.

No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.

Comments are welcome. Please share your knowledge with others.

Monday, August 19, 2013

Low Levels of Thyroxine in Pregnant Mother's Linked to Higher Risk of Autism

It's good to have another possible risk factor for autism that can be controlled! I found this article in Autism Daily Newscast, which is another website that might be helpful to visit.

Low Thyroxine levels in expectant mums linked to Autism

peopleA large scale study published on August 13 in the Annals of Neurology , demonstrated that mothers with low levels of the chemical Thyroxine in their system during pregnancy were almost four times more likely to have children with Autism or an ASD diagnosis.
Thyroid hormone T4 is responsible for regulating the metabolism in the body. A lack of this hormone, or Hypothyroidism(underactive Thyroid) is caused by a lack of Iodine in the diet, and can cause metabolism to reduce dramatically causing weight gain, lethargy and circulatory problems.
T4 deficiency is more pronounced during pregnancy, when the body makes higher demands on diet. Researchers from the Houston Methodist Neurological Institute and Erasmus Medical Centre tested 4,000 Dutch mothers and their children. Previous smaller scale research in this field has tenuously hinted at a link.
The research demonstrated that the lower the levels of the hormone T4 in the mother’s system, the more pronounced the symptoms of Autism were likely to be in the child.
Lead author Dr. Gustavo Román, a Neurologist and Neuroepidemiologist who directs the Nantz National Alzheimer Center said in a press release: “It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics . That gives me hope that prevention is possible.If you are planning to become pregnant, have your doctor measure urine iodine and thyroid function beforehand. If you have just become pregnant, have your doctor measure urine iodine, thyroid function, and begin using prenatal vitamins, making sure iodine is present.”
It is thought according to research conducted by the World Health Association that globally up to one in seven of us could be T4 deficient. Levels are lower in USA because of the introduction of Iodised table salt in the 1920′s.
One of the main authorities on hypothyroidism and effects during pregnancy is a 1988 study conducted by The American college of Obstetricians and Gynecologists which demonstrated that difficult pregnancies were related to low levels of Thyroxine in the bloodstream.

Tuesday, September 18, 2012

NAC Tolerance?

Over the years, some medications have helped to control the irritability and agitation that V has struggled with since she was 3 years old. So many times we have gained temporary relief and glimpsed hope, only to have it fade away within 2 or 3 months. Usually the decline in effectiveness has resulted in adjusted dosages to higher levels to regain benefits. But, there are upper limits to safe dosages with all meds, and a point at which side effects outweigh benefits. We always seem to reach that point with each med, and the hope slips away.
I suspect that V has become tolerant to the effects of NAC, although it is not a medication. I have not increased the daily dose above the 900 mg tablets, but I can no longer see a difference in irritability levels compared with what they were before we began to give her the NAC.
It was always a subjective evaluation of effectiveness. I didn't keep detailed behavior data beyond the usual behavior reports that support staff turn in. It is possible that I saw the improvement that I wanted to see in the beginning. I will use the remaining NAC tablets that I have, but I probably will not order it again.
I am disappointed. 

Tuesday, August 7, 2012

A Day Off of the NAC

I waited until I only had 2 doses of NAC left before ordering more. So, when the NAC shipment didn't arrive before I ran out, we had a day without any NAC. What a difference! I had wondered how much the NAC was helping before we ran out, but now I know. V was irritable from 10 am until 3pm, either acting out or laying in her bed resting or sleeping. She never had a community outing because it would have been unsafe to take her out until she was calm, and 1 mg of lorazepam (ativan) did not help her. She did better in the later afternoon and evening. We still don't have the new shipment of NAC and I am hoping it arrives today. Now I can see that she is much more relaxed with it than without, and it has reduced the need for sedatives to take the edge off of her irritability, which I don't want to use any more often than necessary for safety.

Here is a new article about NAC and explains in terms that are fairly easy to understand, why NAC may help autism symptoms.


N-acetylcysteine may hold potential for treating autism



Read more: http://www.digitaljournal.com/article/330225#ixzz22s2eOhp3



N-acetylcysteine (NAC) is an inexpensive antioxidant supplement that was recently examined for its ability to improve some aspects of autism. Significant improvements on some behaviors were observed with the use of NAC.
Dr. Hardan of the Department of Psychiatry and Behavioral Sciences at Stanford University in Stanford, California performed a randomized, placebo-controlled study of NAC in children with autism.
The children were divided into two groups, and one group received NAC, and the other received a placebo for 12 weeks. Patients who received NAC were administered 900 mg per day for four weeks, then 900 mg twice a day for four weeks, and then 900 mg three times per day for four weeks.
NAC treated patients had significant improvements in irritability compared to those on placebo. A decrease in repetitive/stereotyped behaviors was also observed, but reached statistical significance only on some subscales. Gastrointestinal side effects were observed, but NAC was generally well tolerated. The results were published in the journal Biological Psychiatry.
Autism may have several causes, and some of them include increased levels of the neurotransmitter glutamate, which is excitatory, and high oxidative stress. Researchers of the above study highlight one of the causes of the disease is disequilibrium between antioxidants and oxidants. This causes an increase in reactive oxygen species (ROS), and this causes damage to several cells and organs. Synthesis of glutathione, the body’s main antioxidant, is also perturbed.
NAC may work because it increases glutathione and beneficially modulates the release of glutamate. Whey protein can also raise glutathione levels, and other researchers have also previously found that NAC can raise glutathione.
A systematic review of research findings was carried out by Dr. Frustaci at the Unit of Clinical and Molecular Epidemiology at the Scientific Institute of Recovery and Treatment San Raffaele Pisana, Rome , which specializes in neurologic rehabilitation. Her key results recently published in the journal Free Radical Biology and Medicine shows that patients with autism have low blood levels of glutathione.
Other researchers also recently reported in the journal Current Medicinal Chemistry that glutathione levels are reduced in autism patients, and antioxidant enzymes are decreased. They stated that glutathione can protect against the inflammation and oxidative stress in autism.
Thus, by increasing glutathione levels, NAC might improve some aspects of autism. Larger randomized studies are required to evaluate the effects of NAC on the disease.


Read more: http://www.digitaljournal.com/article/330225#ixzz22s2Dz5ZD

CM-AT for Core Symptoms of Autism

This medication works in the intestines of children to help them better digest proteins so that they don't need to avoid gluten or other dietary items that exacerbate autism symptoms because of immune system responses.

Read below;


Autism

Autism represents a large patient population with unmet medical needs.  According to the latest study by the Centers for Disease Control and Prevention (CDC), autism affects approximately one in 110 children.  Some 70% of children with autism could potentially benefit from Curemark’s enzyme replacement therapy, one of first therapies to address the underlying physiology of autism, rather than just treat its symptoms.
Curemark has identified a series of biomarkers that determine which children with autism and Pervasive Developmental Disorder (PDD) may have digestive deficiencies underlying or as a major component of their disease.  Research by Dr. Joan Fallon, Curemark’s CEO and founder, showed enzyme deficiencies in children with autism, resulting in an inability to digest protein.  The inability to digest protein affects the production of amino acids, the building blocks of chemicals essential for brain function.  Curemark is progressing with Phase III clinical trials for its CM-AT autism treatment, which has been granted fast track status by the FDA. 



PRESS RELEASE
Aug. 6, 2012, 10:13 a.m. EDT

Curemark To Enroll Children 9-12 Years Of Age Into Medical Trial Of CM-AT For Children With Autism

NEW YORK, Aug. 6, 2012 /PRNewswire via COMTEX/ -- Dr. Joan Fallon, founder and CEO of Curemark, a Rye, New York-based drug research and development company focused on the treatment of Autism and neurological diseases, today announced that the company has received clearance from the Food and Drug Administration (FDA) to commence direct enrollment of children 9-12 years of age into its open-label extension study of CM-AT for children with Autism. A limited cohort of children and sites will be involved in this direct enrollment.
In December 2011, Curemark reported that its Phase III double-blind randomized placebo-controlled multicenter clinical trial of CM-AT for Autism met its primary and secondary endpoints. The trial compared CM-AT to placebo in children with Autism 3-8 years of age. Top line results demonstrate a statistically significant effect of CM-AT over placebo on both the core and non-core symptoms of Autism.
Dr. Fallon stated, "We are thrilled to be allowed to directly enroll these older children into our ongoing open-label extension study." She continued, "Enrolling children 9-12 years-of-age with Autism who may potentially benefit from this therapeutic treatment in our trial is extremely important."
The FDA has placed CM-AT into the Fast Track program which facilitates the development and expedites the review of new drugs that are intended to treat serious or life-threatening conditions and that demonstrate the potential to address unmet medical needs.
About CUREMARK LLC
Curemark is a drug research and development company focused on the treatment of neurological and other diseases, especially those with dysautonomic components, by addressing certain key gastrointestinal/pancreatic secretory deficiencies. The company announced in December, 2011, that its Phase III double blind randomized placebo controlled multicenter clinical trial of CM-AT for autism met its primary and secondary endpoints. To learn more about our innovative science, visit www.curemark.com .
About Autism
Autism Spectrum Disorder (ASD) is a range of complex neurodevelopment disorders characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. It is estimated that autism affects 1 in 88 children in the United States. It is reported to occur in all racial, ethnic and socioeconomic groups, with a 3 to 4 times greater occurrence in boys than girls. There is presently no drug approved to treat the core symptoms of autism. Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
Safe Harbor Statement
This news release contains forward-looking statements that involve risks and uncertainties that could cause our actual results and experiences to differ materially from anticipated results and expectations expressed in such forward-looking statement. These forward-looking statements include, without limitation, statements regarding the mechanism of action of the Curemark products CM-AT, CM-4612 and CM-182 their potential advantages, their potential for use in treating diseases or disorders, as well as the timing, progress and anticipated results of the clinical development and regulatory processes concerning the Curemark products CM-AT, CM-4612 and CM-182. These statements are based on our current beliefs and expectations as to such future outcomes, and are subject to known and unknown risks and uncertainties that may cause actual future experience and results to differ materially from the statements made. Factors that might cause such a material difference include, among others, risks that the results of clinical trials will not support our claims or beliefs concerning the effectiveness of the Curemark products CM-AT, CM-4612 and CM-182, our ability to finance our development of CM-AT, CM-4612 and CM-182 regulatory risks, and our reliance on third party researchers and other collaborators. We assume no obligation to update these statements, except as required by law.
SOURCE Curemark LLC
Copyright (C) 2012 PR Newswire. All rights reserved 

Saturday, August 4, 2012

After Five Weeks of NAC

First, I want to say that I discussed the use of the NAC with V's primary care physician at the beginning of our use and he was fine with it. I also reported our use of the NAC to V's psychiatrist, who prescribes medications. I think that it is important when adding anything new to make sure that it is discussed with medical professionals to make sure that there will not be any interactions with medications.

We started using one 900mg PharmaNAC tablet each morning on June 26 and it is now Aug 5. Around the same time that we started the NAC, we also eliminated some activities that were not so popular with V and so they contributed to irritable behavior. It is reasonable to conclude that those changes would reduce irritable behavior by lowering  V's stress level as much as the NAC might.

What I have observed is that V is not waking up in an irritable and agitated state as she did often before.

She is working cooperatively and enthusiastically with her tutor, her speech therapist and her occupational therapist, regardless of the time of the day. She has never worked well with a tutor before, but she has had a new one for the past 3 weeks, and it has gone very well since the first session. She worked well with the tutor, flying through all of her activities, in spite of no rest after all day out in the heat, and in spite of having her grandfather in her room painting her walls while she worked, furniture all pushed into the center of the room.

She has had two of the best therapeutic horseback riding sessions that she has had in years during the past month. The trainer reported that she stayed on the horse most of the time allowed, asked to dismount appropriately and gave the horse kisses and pats.

This week, she remained relatively calm and flexible during a disruption to her routine while we repainted her playroom/bedroom area.

There are still periods of agitation, and I did not expect them to be totally eliminated. I hoped to reduce the frequency and severity of irritable behaviors based on the the study of NAC use in individuals with an autism spectrum disorder.

I am pleased enough with the lower level of irritability that I ordered more PharmaNAC online yesterday and plan to continue to give it, and perhaps try adding a second daily dose to see if we get further improvement. 

Tuesday, July 24, 2012

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. 

Friday, July 20, 2012

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
Michael Kilgard
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
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
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.
Rennaker
“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.

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