Want to Ride a Bike?

We bought Valerie an adult size tricycle and enrolled her in the Special Olympics cycling group. It did not work out. She gets very anxious after a few minutes on her bike. Our occupational therapist has attempted to work on cycling skills, but she says there are prerequisite skills that need work first. This looks like an interesting option to check out. This article appeared in Philly.com  To learn more, visit http://icanshine.org

Two-wheeled self-confidence: Special bikes for special kids

This week, Colin and 23 other young people are participating in iCan Bike, a Paoli-based program that aims to turn riding a bicycle into something everyone can achieve.Year after year, Colin MacDonald could hardly stand it for more than a few minutes. The frustration was just too great.

The 10-year-old Yardley student had to steer, balance, pedal, and watch the road - all at the same time.

Riding a two-wheel bike for Colin, who has a form of autism, seemed insurmountable, no matter how many shiny new bicycles or fresh attempts at lessons.

So word of a special camp with custom-designed bicycles to teach people with disabilities came as welcome news. Perhaps he might have a better chance of joining in an activity that seemed a youthful rite of passage for everyone but him.

"A lot of children with disabilities are at a disadvantage when it comes to socializing and being included in community," said social worker Stephanie DeSouza, director of an iCan Bike summer session at Holland Middle School in Bucks County. "They don't fit in, and this is one more thing they can't do."

Riding a bike can help foster interaction with peers and family, and also boost self-confidence, DeSouza said.

The program is an initiative of iCan Shine, a nonprofit that offers recreational learning opportunities for people with disabilities. Founded in 2007 under its former name, Lose the Training Wheels, the organization last year offered 90 iCan Bike programs in 32 states and two provinces in Canada, serving nearly 2,500 people with disabilities.

A new bike camp is scheduled to begin Aug. 19 at St. Joseph's University.

"It's one of the few things a child can do independently of parents and have control of where and how fast they want to go," said Jeffrey Sullivan, of Malvern, who cofounded iCan Shine. "It's the sense of independence and accomplishment."

The program uses a special bike invented by Richard Klein, a retired mechanical-engineering professor, who started operating bike camps in the 1990s. Cone-shaped rollers are attached to the back wheel.

The iCan system uses eight sizes, each tapered so that the cones have a different degree of contact with the ground. As riders become more proficient in balancing, rollers are switched progressively to those with less ground contact.

"We don't tell them we are going to change from one roller to the next. We don't want to stress them out," Sullivan says. "So when they're ready, we tell them: 'Great job. Go get a drink of water.' Then we flip the roller. When they come back, they jump back on."

Each camper is constantly monitored by at least one camp volunteer, preferably two.

On Wednesday, the third day of the five-day camp, Declan Kelly, 18, of Doylestown, became the first in the week's 8:30 a.m. session to ride solo.

Amid the applause and "woo hoos," Kelly, who has Down syndrome, glided in for a triumphant fist-pump with his mom, Deb Corsini.

"I'm so proud of him." Corsini said.

Kelly said he was taking the lessons because "I want to ride bikes with my friends."

The most difficult part of the camp was "the crash," Kelly said. The best: his solo ride.

"It was so good, so good," he said.

The Holland camp is being hosted by AMICA (from the Latin for friend), a group founded by DeSouza that helps youngsters with autism enhance their social skills.

ICan Shine partners with community groups to host the camps and supply the bicycles and supervising staff. Campers must be at least 8 years old to participate.

About 80 percent of iCan Shine campers successfully learn to ride during the camp. For the remaining 20 percent, organizers teach parents how to continue the lessons.

Mariah Drenth-Cormick watched from the bleachers as daughter Kathryn Drenth, 8, circled the gymnasium on her bike.

Drenth-Cormick, who runs the Bucks County Down Syndrome Interest Group, a parent support group, has been waiting for her daughter's eighth birthday so that she could enroll her in the camp.

Kathryn has been so enthusiastic that she tried several times to break for the gymnasium door so that she could ride outside in the parking lot - something reserved for more-advanced campers, said her "spotter," Matt Krumenacker, 17, of Doylestown, a camp volunteer.

But if Kathryn can't ride solo by her last session Friday, her mom says she's OK with that.

"I hope she's closer to riding it than when she started," Drenth-Cormick said, "and that she has the confidence that will take her closer."

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Contact Kristin E. Holmes at 610-313-8211 or kholmes@phillynews.com.

When Occupational Therapy is Unavailable, An Option

Valerie has a great occupational therapist working with her now. It took me 4 years to find her. If her husband gets a transfer back to the midwest, where she is from, I will be looking again. Having the financial resources for OT is not the only consideration. Occupational therapists are in high demand in schools and clinics and have busy schedules. Finding one who will want to work with your child, especially if tantrums and aggression are an issue, can be difficult when they have so many options.
Here is one solution to that problem. It may not be a perfect substitute for an OT, but it might be better than nothing. This article was found in Autism Daily Newscast.

Online Program Offers Affordable Therapy for Autism

August 12, 2013 by Laurel Joss

It is a known fact that children with autism suffer from sensory dysfunction. Sensory issues can range from mild to severe, and can manifest in many different ways. Occupational therapists trained in sensory integration can help, but their services are expensive, and may not always be covered by insurance.

Mendability is an online program developed by Eyal Aronoff and Kim Pomores that helps parents develop a custom, home-based Sensory Enrichment Therapy program to meet their child’s needs. Parents fill out an online assessment, which generates specific activities they can work on with their child at home. The activities take between 1 – 10 minutes to complete, and they are scheduled at different intervals throughout the day. They include things like walking on textured mats, or dipping your hand into bowls of warm and cold water. The activities are structured in a way that stimulates the child’s senses, while strengthening connections between various parts of the brain.

A study by Michael Leon, professor of Behavioral Neuroscience at the University of California Irvine, showed promising results. He tested 28 boys with autism over six months. They were divided into two groups. Both groups received standard behavioral therapy, but only one group completed daily environmental enrichment exercises like those on the Mendability web site. The results showed that 42% of the boys in the sensory enrichment group showed improvement relating to others and responding to sensory input, while only 7% of the boys in the behavior-only group showed such improvement. Also, 69% of the parents of the children in the sensory enrichment group reported improvements in perception, reasoning, and overall autism symptoms.

The program is based on neuroplasticity, the brain’s ability to create new internal connections based on daily experiences. While early intervention is still best, scientists have discovered that the brain can forge new connections throughout the lifespan. Recent studies have shown that children with autism have weaker connections between certain parts of the brain, which could be a factor in the symptoms of their disability.

For example, many children with autism have weak connections in the corpus callosum, the part of the brain that connects the two hemispheres. Activities such as placing the hands in two bowls of water, one warm and one cold, and then switching hands, causes signals to be sent to both sides of the brain, activating the corpus callosum and creating new connections.

Parents complete the activities with their child, fill out the online assessment, and move on to new activities once their child has mastered the old ones. There are also online forums where parents can discuss challenges and progress, and regular access to program specialists who can help fine tune difficulties that may arise. Subscriptions start at $59 per month.

Parents such as Rebecca Terry of Colorado report amazing results from Mendability.

“Now I have a child who hugs me, who tells me how much she loves me, and she knows what it means.”

For more information, visit their website at www.mendability.com.

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

August 18, 2013 by Shân Ellis

A 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.

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. 

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

LIKE THIS ARTICLE5

E.

By E. Hector Corsi

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.

LIKE THIS ARTICLE5

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 

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.