A Chance to Say Thank You

I mentioned in an earlier posting, that I began to tap into wrap-around supports that were state and county funded after V came home from an extended stay at the Kennedy Krieger Institute for aggressive and self-injurious behaviors. The most critical of those supports was the expensive one-on-one before and after-school care that was essential for me to be able to go to work and to support us. Without that support, I had quickly exhausted my own savings, paying as much as I could for inadequately trained caregivers. People who had the necessary experience for the work were charging $10.00 per hour at the time, and it was far more than a single-parent on a teacher's salary could manage for long. Not only did that care allow me to go to work, but it allowed me to grocery shop, go to the pharmacy, and to go anywhere I needed to that would have been too difficult and unsafe to attempt with V by myself. Without those supports, I would have had to allow V to go to live in an institutional setting because I would not have been able to work and provide a home for her.

After a few years of receiving these supports, the state decided to limit such services to a period of not more than 2 years, so that new families on waiting lists could have access to the services. The program of return-divert was originally intended for children in crisis whose situations would improve or resolve within that time frame. However, children with chronic, life-long disabilities had entered the program, like my daughter, and the needs of those children did not diminish within a two year period. A group of women who had children with serious, chronic disabilities who were in danger of losing these critical supports came together to try to persuade state officials to change their minds about the 2-year time limit. I was among them. My ability to keep V at home was at stake. I was scared and I think we all were.

As a group, we went to visit the office of Kathleen Kennedy Townsend, the Lt Governor of Maryland at the time, to express our concerns. We did not receive support from that meeting. Later on, I was told by the other women in the group, that we would not lose our supports. We had received support from a member of the Maryland State Assembly by the name of Chris Van Hollen Jr., and our children were to be "grandfathered in" so that they would continue to receive necessary supports until they aged out of the program.

I never forgot that support that allowed me to keep my daughter at home for at least as long as she was in school, and that allowed her to be a part of a family. When it came time for Mr. Van Hollen to run for the U.S. House of Representatives, his sign was in my yard, and he always got my vote.

This weekend, I attended a BBQ at the home of some friends in Kensington, MD.  To my surprise, Congressman Van Hollen appeared for a visit at the party. I found a moment to introduce myself and to tell him the story of how his support had meant so much to me and my daughter. Most of the time, political decisions seem impersonal to me, but in this case, nothing could have been more personal or meaningful and I was thankful to have the chance, after all of these years, to say a personal thank you to someone whose support made such a difference.

Less importantly, the experience taught me that getting involved in local and state decisions is not a waste of time. I learned that even a small group of passionate people can bring about a desired change. I learned that policy makers do care about the concerns of even a small group of their constituents. I came away from that experience feeling as if I had a voice in my local government. 

Constantly Tweeking the Program

V has been in self-directed adult services for 4 years now, and each year has been different from the previous year.
 Most recently, I decided to discontinue participation for her in Fitness for Health sessions. V went there once or twice a week for two years, but never seemed to buy into it. There were times that she gave a good 45-50 minutes of hard work and seemed to enjoy the activities and other days that she refused to even get out of the car when she arrived at the facility. Most often, we could get her to go inside, and she would participat for 10-20 minutes and then head for the door and want to leave. We had a variety of trainers with different approaches. The first was quite authoritative and had a lot of conflict with our support staff about who was in charge of V. Other trainers were more easy going and gave more choice and flexibility to V, welcoming the support of her staff. Our behavior analyst went out to the facility to observe and make recommendations on several occasions. We used a portable DVD player as reinforcement for a while and then eliminated it when it caused more trouble than it was worth. Stickers were offered as rewards for completed activities, but became too much of a focus. Breaks were given to rest in between activities. The Dynavox speech output device was used to model how to appropriately ask for a break or snack, to choose which activities to do, and to request to leave. Nothing really turned things around. It was a 30 minute drive each way and the cost has risen to $110 per hour, from $100.00 per hour. Parking at the facility was difficult in our large Suburban. The garage was hard to maneuver in, and resulted in damage to a mirror on our vehicle, and the outside parking was very limited and tight. When Natalie, our most recent trainer, resigned, V was assigned a different trainer who could not meet with her every week at her designated day and time because of an assignment to work with a school group on alternate weeks. Since V has different staff on each weekday, having to change the day of the week for her Fitness for Health appointment from week to week would have made consistency difficult. I asked for a different trainer who could meet every week on the same day and time, but more than a week went by without any response to the request. I decided it was time to let go of Fitness for Health and move on. We had recently hired an excellent occupational therapist who was getting an hour of happy cooperation from V every week, from her very first visit, and continues to do so. She works on all the same goals as Fitness for Health and more and comes to our home every week at the same time so there is no commute or transition from the car to a facility. For the summer, I will increase her sessions to twice a week, in place of the Fitness for Health session. If she were available, I would have her come twice a week all year, but she can't fit that into her schedule, as she works at an elementary school during the school year, and a clinic as well. I still think Fitness for Health is a great program with wonderful staff, equipment and facilities, and I appreciate the commitment they made to V even when it was difficult. Ultimately, I felt that continuing to push V to participate in something she was so resistant to was not in the spirit of self-direction of services, especially when there are other ways to meet her needs that don't stress her. The benefit vs cost was not working anymore.

Our Special Educator wasn't clicking quite as well with V as the speech therapist or the occupational therapist. I tried an observation of the Speech Therapist and by the Speech Therapist to get some ideas going, but V seemed to become frustrated and agitated with that individual, although he was highly qualified. Was inconsistency due to frequent absences a reason or was it just not a great personality match? I tried to stay out of the room so as not to be a distraction and to get some feedback from the support staff about what they thought was causing V to get upset. Their conclusion was that she responded better when a variety of materials were prepared and brought by the O.T. and S.T, so that if she were uninterested in one activity, they had something else ready to offer. The educator was bringing a much more limited number of activities, and so was unable to offer alternatives to V if she rejected one. The other observation staff made was that V needs physical space when she becomes tense, and the educator was not giving her enough space at those times. After 7 months I decided that it was time for a change. We have a new educator now, and we will see if that works better for V. I have shared the observations of what works best with the new educator, and experienced staff are supporting her as well. She doesn't get the same enthusiastic response yet, as the S.T. and the O.T., but it may come with time.

In the past, we had adapted aquatics. V used to love the pool and water of all kinds, but then seemed to become reluctant to get in the pool. We had a lot of trouble finding an instructor, then had a great one for 6 months, but then lost her due to an increase in her hours at her other job. After that, I had no success finding another instructor and finally just took adapted aquatics out of V's plan of care and budget.

Community outings used to include shopping for produce at Whole Foods with a picture symbol list of items to find and buy. That worked well for while, until V discovered the frozen food section and kept wanting to buy 2 or 3 frozen pies instead of shopping for fresh produce. She hasn't been to Whole Foods for a while. I will probably send her to Lewis Orchard over the next couple of months, as their selection tends to be much more limited to items that I would want her to identify and buy.

The option to move funds from one part of the budget to another through a budget modification or plan modification, has allowed me to change the program as needed to meet V's needs and preferences. The ability to hire and fire staff and vendors has allowed me to find better matches to V's personality and interests over time, to include more things in her routine that work well and eliminate those things that don't. I expect that her program and activities will not look the same this time next year as they do today. That is probably a good thing and what is so great about an individualized program. It is constantly evolving to meet the needs of the person. 

Do Psychiatric Medications in Water Contribute to Autism?

Check out this article:

Prozac-Contaminated Drinking Water May Be Link To Autism

By Drew Armstrong - Jun 6, 2012 5:00 PM ET

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Fish exposed to psychiatric medicines in water showed gene patterns similar to those found in people with autism, in a study suggesting a link between drugs that get into the human drinking supply and the disease.

Researchers put antidepressants Prozac and Effexor, as well as antiseizure drug Tegratol into water tanks of minnows. Tests showed that the same genes turned on in people with autism were also triggered in the fish after exposure, according to a study published today in the journal PLoS ONE.

The findings suggest that small amounts of psychiatric medications found in the drinking supply may be a cause of autism, the researchers said. Psychiatric drugs have been linked to autism-like symptoms in studies of rats exposed to the medicines, according to the study.

“An environmental cause is really not on the radar for a lot of people,” said study author Michael Thomas, a professor of evolutionary biology at Idaho State University in Pocatello, in a telephone interview. “My sincere hope is that this opens the door to a new question and allows people to look into that possibility.”

Concentrations of the drugs are found downstream from water treatment plants that process human waste that contains the medicines, Thomas said. The molecules make their way into the supply downstream, where pregnant mothers who drink the water can pass the exposure to their fetuses.

“While others have envisioned a causal role for psychotropic drugs in idiopathic autism, we were astonished to find evidence that this might occur at very low dosages, such as those found in aquatic systems,” Thomas said in a statement accompanying the study.

Eli Lilly & Co.’s Prozac, Pfizer Inc.’s Effexor and their generic equivalents belong to classes of drugs that generated $14.2 billion in U.S. sales last year, according to data compiled by Wolters Kluwer NV and Bloomberg.

Higher Concentrations

The researchers used concentrations of the drugs higher than are measured in the field, which Thomas said was intentional.

“Every study that comes out that measures concentrations in the environment shows orders of magnitude higher than the previous study, so we figured the concentrations would catch up with us,” Thomas said.

The researchers are collecting water samples from places with known concentrations, and plan to test minnows in that water, he said.

Autism Rise

The number of children with autism and related disorders is rising, according to data collected by the U.S. Centers for Disease Control and Prevention in Atlanta. The number of 8-year- olds identified with autism spectrum disorders rose 23 percent in 2008 from 2006, according to a March CDC report. Some of the increase is due to a higher awareness of autism as a cause of behavioral disorders, though how much that contributed to the rise isn’t known, according to the report.

Autism includes a range of disorders characterized by social impairment, communication difficulties, and restricted, repetitive patterns of behavior, according to the National Institutes of Health.

The study was supported by funding from the PhRMA Foundation, National Institutes of Health and Idaho State University.

To contact the reporter on this story: Drew Armstrong in New York atdarmstrong17@bloomberg.net;

To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net

More Information on NAC for Irritability

Here is another article on NAC. This one is from PsychCentral. 

By RICK NAUERT PHD Senior News Editor
Reviewed by John M. Grohol, Psy.D. on May 30, 2012

A new pilot study suggests a specific antioxidant supplement may be an effective therapy for some features ofautism.
Researchers from the Stanford University School of Medicine and Lucile Packard Children’s Hospital studied 31 children with the disorder.
The antioxidant, called N-Acetylcysteine, or NAC, effectively reduced irritability in children with autism and moderated repetitive behaviors. The researchers emphasized that the findings must be confirmed in a larger trial before NAC can be recommended for children with autism.
Irritability affects 60 to 70 percent of children with autism. “We’re not talking about mild things: This is throwing, kicking, hitting, the child needing to be restrained,” said Antonio Hardan, M.D., the primary author of the new study.
“It can affect learning, vocational activities and the child’s ability to participate in autism therapies.”
The study will appear in a forthcoming issue of the journal Biological Psychiatry.
Stanford University is filing a patent for the use of NAC in autism, and one of the study authors has a financial stake in a company that makes and sells the NAC used in the trial.
The dramatic increase in diagnosed cases of autistic spectrum disorders has made the discovery of new medications to treat autism and its symptoms a high priority for researchers.
Currently, irritability, mood swings and aggression, all of which are considered associated features of autism, are treated with second-generation antipsychotics.
However, these drugs can cause significant side effects, including weight gain, involuntary motor movements and metabolic syndrome, which increase diabetes risk.
By contrast, side effects of NAC are generally mild, with gastrointestinal problems such as constipation, nausea, diarrhea and decreased appetite being the most common.
The state of drug treatments for autism’s core features, such as social deficits, language impairment and repetitive behaviors, is also a major problem.
“Today, in 2012, we have no effective medication to treat repetitive behavior such as hand flapping or any other core features of autism,” Hardan said.
NAC could be the first medication available to treat repetitive behavior in autism — if the findings hold up when scrutinized further.
The study tested children with autism ages 3 to 12. They were physically healthy and were not planning any changes in their established autism treatments during the trial.
In a double-blind study design, children received NAC or a placebo for 12 weeks. The NAC used was a pharmaceutical-grade preparation donated by the neutraceutical manufacturer BioAdvantex Pharma.
Subjects were evaluated before the trial began and every four weeks during the study using several standardized surveys that measure problem behaviors, social behaviors, autistic preoccupations and drug side effects.
During the 12-week trial, NAC treatment decreased irritability scores from 13.1 to 7.2 on the Aberrant Behavior Checklist, a widely used clinical scale for assessing irritability. The change is not as large as that seen in children taking antipsychotics. “But this is still a potentially valuable tool to have before jumping on these big guns,” Hardan said.
In addition to the behavioral improvements, two standardized measures of autism mannerisms and stereotypic behavior showed that children taking NAC demonstrated a decrease in repetitive and stereotyped behaviors.
“One of the reasons I wanted to do this trial was that NAC is being used by community practitioners who focus on alternative, non-traditional therapies,” Hardan said. “But there is no strong scientific evidence to support these interventions. Somebody needs to look at them.”
Hardan cautioned that the NAC for sale as a dietary supplement at drugstores and grocery stores differs in some important respects from the individually packaged doses of pharmaceutical-grade NAC used in the study, and that the over-the-counter version may not produce the same results.
“When you open the bottle from the drugstore and expose the pills to air and sunlight, it gets oxidized and becomes less effective,” he said.
While researchers did not study the mechanisms by which NAC may work, two physiological hypotheses may explain the positive results.
In one scenario, NAC increases the capacity of the body’s main antioxidant network, which some previous studies have suggested is deficient in autism.
Another possibility embraces research that suggests autism is related to an imbalance in excitatory and inhibitory neurotransmitters in the brain. NAC is known to modulate the glutamatergic family of excitatory neurotransmitters – potentially balancing neurotransmitter levels and reducing the presentation of some autistic symptoms.
The scientists are now applying for funding to conduct a large, multicenter trial in which they hope to replicate their findings.
“This was a pilot study,” Hardan said. “Final conclusions cannot be made before we do a larger trial.”
Source: Stanford University

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NAC for Irritability symptoms of Autism

Here is an interesting treatment option to discuss with your healthcare provider, however, after reading you should review the side-effects and drug interactions at webmd; http://www.webmd.com/vitamins-supplements/ingredientmono-1018-N-ACETYL%20CYSTEINE.aspx?activeIngredientId=1018&activeIngredientName=N-ACETYL%20CYSTEINE before you run out to GNC and buy some for your child. This substance is easily obtained without a prescription, so it is important to know the good and the bad possibilities of use.

Contact: Rhiannon Bugno
biol.psych@utsouthwestern.edu
214-648-0880
Elsevier 

New treatment for irritability in autism

A new study in Biological Psychiatry reports

Philadelphia, PA, May 31, 2012 – Autism is a developmental disorder that affects social and communication skills. Irritability is a symptom of autism that can complicate adjustment at home and other settings, and can manifest itself in aggression, tantrums, and self-injurious behavior. These disruptive behaviors are frequently observed in children with autism, which may considerably affect their ability to function at home or in school.

N-acetylcysteine (NAC) is approved by the US Food and Drug Administration for the treatment of acetaminophen (Tylenol) overdoses, but it may have other applications related to its effects in the brain. NAC helps maintain and restore glutathione, which play a key role in the antioxidant defense system. Additionally, cysteine as supplied by NAC treatment, stimulates a protein, the cystine-glutamate antiporter, resulting in the decrease of glutamatergic neurotransmission. NAC has two resulting effects: 1) it may protect brain cells by raising the level of a protective antioxidant metabolite called glutathione, and 2) it may reduce the excitability of the glutamate system by stimulating inhibitory receptors.

These drug actions are important because, although the causes of autism are unknown, it is clear that there are many influencing factors and scientists are pursuing multiple hypotheses. Two in particular relate to NAC: one theory is that autism may be caused by an imbalance between oxidants and antioxidants in the body; the other is that the glutamate system may be dysfunctional in individuals with autism.

These hypotheses led researchers at Stanford University and the Cleveland Clinic to conduct a pilot trial of NAC in children with autistic disorder. Children were randomized to receive either NAC or placebo daily for 12 weeks and their symptoms were evaluated four times during that period.

They found that irritability was significantly decreased in the children who received NAC. In addition, NAC was well-tolerated and caused minimal side effects.

Lead author Dr. Antonio Hardan commented, "Data from this preliminary trial suggest that NAC has the potential to be helpful in targeting irritability in children with autism. It is also unclear if NAC improves other symptom domains in autism."

"At this point it is too early to tell how NAC reduced irritability in autism, but this finding will be an important addition to the field if it can be replicated," said Dr. John Krystal, Editor of Biological Psychiatry, where the study is being published.

Dr. Hardan agreed, adding that "large randomized controlled trials are needed to attempt to replicate the findings from this pilot trial and to determine whether or not NAC is effective in targeting other symptoms observed in autism such as repetitive and restricted interests." This small pilot study was the first step and so the next stages of work can now begin to determine whether NAC could potentially become an approved treatment for autism.

###

The article is "A Randomized Controlled Pilot Trial of Oral N-Acetylcysteine in Children with Autism" by Antonio Y. Hardan, Lawrence K. Fung, Robin A. Libove, Tetyana V. Obukhanych, Surekha Nair, Leonore A. Herzenberg, Thomas W. Frazier, and Rabindra Tirouvanziam (doi: 10.1016/j.biopsych.2012.01.014). The article appears in Biological Psychiatry, Volume 71, Issue 11 (June 1, 2012), published by Elsevier.

Notes for editors

Full text of the article is available to credentialed journalists upon request; contact Rhiannon Bugno at +1 214 648 0880 or Biol.Psych@utsouthwestern.edu. Journalists wishing to interview the authors may contact Dr. Antonio Hardan at +1 650 723 5511 or hardanay@stanford.edu.

The authors' affiliations, and disclosures of financial and conflicts of interests are available in the article.

John H. Krystal, M.D., is Chairman of the Department of Psychiatry at the Yale University School of Medicine and a research psychiatrist at the VA Connecticut Healthcare System. His disclosures of financial and conflicts of interests are available here.

About Biological Psychiatry

Biological Psychiatry is the official journal of the Society of Biological Psychiatry, whose purpose is to promote excellence in scientific research and education in fields that investigate the nature, causes, mechanisms and treatments of disorders of thought, emotion, or behavior. In accord with this mission, this peer-reviewed, rapid-publication, international journal publishes both basic and clinical contributions from all disciplines and research areas relevant to the pathophysiology and treatment of major psychiatric disorders.

The journal publishes novel results of original research which represent an important new lead or significant impact on the field, particularly those addressing genetic and environmental risk factors, neural circuitry and neurochemistry, and important new therapeutic approaches. Reviews and commentaries that focus on topics of current research and interest are also encouraged.

Biological Psychiatry is one of the most selective and highly cited journals in the field of psychiatric neuroscience. It is ranked 4th out of 126 Psychiatry titles and 15th out of 237 Neurosciences titles in the Journal Citations Reports® published by Thomson Reuters. The 2010 Impact Factor score for Biological Psychiatry is 8.674.

About Elsevier

Elsevier is a world-leading provider of scientific, technical and medical information products and services. The company works in partnership with the global science and health communities to publish more than 2,000 journals, including The Lancetand Cell, and close to 20,000 book titles, including major reference works from Mosby and Saunders. Elsevier's online solutions include SciVerse ScienceDirect, SciVerse Scopus, Reaxys, MD Consult and Mosby's Nursing Suite, which enhance the productivity of science and health professionals, and the SciVal suite and MEDai's Pinpoint Review, which help research and health care institutions deliver better outcomes more cost-effectively.

A global business headquartered in Amsterdam, Elsevier employs 7,000 people worldwide. The company is part of Reed Elsevier Group PLC, a world-leading publisher and information provider, which is jointly owned by Reed Elsevier PLC and Reed Elsevier NV. The ticker symbols are REN (Euronext Amsterdam), REL (London Stock Exchange), RUK and ENL (New York Stock Exchange).

Media contact
Rhiannon Bugno
Editorial Office, Biological Psychiatry
+1 214 648 0880
biol.psych@utsouthwestern.edu

Drug Trial on Arbaclofen for Autism

To read an MSNBC article about the trials of Arbaclofen for reduction of autism symptoms, copy and paste this URL;http://www.msnbc.msn.com/id/47630513/ns/health-mental_health/#.T8zqZbDOy5I

Here is a short passage from that article:

 "As Jack's experience suggests, that may be about to change. Researchers are conducting advanced trials of the first drugs expressly designed to correct the genetically induced signaling problems in the brain that result in autism. The early indications are positive enough to offer new hope for families and spark interest from drug companies. For patients, this research "may not solve their autism, but it may solve aggression, it may solve sensory overload, which leads to a lot of behavioral issues," says Isaac Pessah, an autism researcher at the University of California at Davis, who has not been involved in any of the drug trials."

According to the article the drug is still being studied in small trials and access by those not enrolled in these studies is still years away. 

Leaving Town

It is time for my husband and I to get away, leaving V at home with her caregivers. Well in advance, I post overnight shift opportunities for her usual daytime staff. I keep a file on my computer of documents I will update and print out each time we go out of town. These include a form that gives my written permission for support staff to authorize emergency medical treatment in my absence, with hospital preferences. I leave printed instructions regarding meals and appointments for V and check her medications to make sure that there is enough to last until I return. Usually this involves a trip to the pharmacy to refill something before I go. There are grocery shopping trips to make sure that I leave enough fresh and frozen food for all of her meals and snacks to last until I return. I check the dash of the vehicle that will be used in our absence and make sure it doesn't need oil and the battery has a strong charge. The last time I went out of town for an overnight, the car battery died in a park, requiring the staff to get a jump start from Park Police. Yikes!
Well, there is so much to do and worry about before I leave home that I almost need the vacation by the time I go. I exchange phone calls and texts with the staff each day to see how things went and to answer any questions that come up. Her routines continue without me. This makes my absence easier on her. This is how she is part of the family but lives her own life, while I have my independence too. I won't always be with her, so it is good that she can be okay away from me for a week now and then. I will tell her I am going away today and I will say goodbye tomorrow before I go. She won't like it, but she will be okay until I return.