Bluefoot Pirate Adventure for our Special Needs Kids

Friday, June 29th Edit:

OK Guys, since the last event was rained out, we've officially changed the date to Sunday, July 22, 2012 at 2:30PM. Everyone who registered last time, I'm asking that you REPOST how many in your group are going and if you can't go on the new date, I'm asking that you please let us know. 

Sorry for the delay in getting the new date but we had to work some things out before rescheduling.

As usual, we have a FANTASTIC Group Rate of just $10.00 (66% Off!) per person for our "Cost of Autism Special Needs Cruise". Additionally, the "Pirate Pack" is only $5.00 (75% Off!)

Please PRE Register by clicking on the Event here, since Space IS Limited.

https://www.facebook.com/events/429671483723428/

If you're NOT on Facebook, simply add a comment at the bottom of this page with how many are going with you.  PLEASE make sure to use some sort of Authentication, such as Google, Twitter or Yahoo, so we have a way to follow up with you.

Friday, June 15th Edit:

Our Event on Sunday June 10th at 3PM was an ABSOLUTE HIT.  EVERYWHERE I looked, there was NOTHING but smiles.  EVERYONE, adults, our kids and their siblings had a FANTASTIC time. Check out our Facebook page for pictures and videos!

We've decided to make the NEXT event for our kids on Sunday June 24th at 1PM.  To minimize confusion, I'm asking that everyone who wants to go, please go directly to the Event Page we have on Facebook and click "We are going" then on the Comments Section, put how many will be in your group! 

https://www.facebook.com/events/429671483723428/

PLEASE remember that while bringing Siblings and close friends to the Event is OK, we're primarily organizing this for Our Special Needs Kids.  So if this isn't you, we would appreciate it if you would go directly to Bluefoot Pirate Adventures website and buy the regular tickets for your family. THANKS!!!

Saturday June 2nd Edit:

With one week and one day left to the event, we've had a lot of people really excited about going, which is fantastic!  Unfortunately, there's been several people, (about 14 in Total including their groups) that WANT to go, but we no longer have space.  So I'm reviving the idea of putting together another cruise.  I'm thinking about making it for the following Sunday, at the same time 3PM, but I'd like YOUR feedback if there's another day or time that works better for you.  Please let us know.  If you think the following Sunday at 3PM is perfect, PLEASE LET US KNOW.... THANKS!, now hit the "Comments Section"!

Anyone who's seen the Video for Bluefoot Pirate Adventures has wanted to take their kids out to see it.  However the price might scare some landlubbers away!  At 25.00 per person, $100.00 for the average family of 4 might seem a bit steep.  Doubly so for our families with special needs kids, as our expenses are usually higher than most.  We took Jonathan on this "High Seas Adventure" and he had the time of his life!  In this regard, the cost of admission is well worth the price. 

Jonathan at Bluefoot Pirate Adventures

As with any place, we all know that if you get a group going it's easier to get a discount, so we called Captain Jack over at Bluefoot Pirate Adventures and made a proposal to have our families come as a group if we could get a group discounted rate.  The old buccaneer gave us a run for our money, but in the end settled on a HUGE discount, showing his heart for our kids was just as squishy as a jellyfish!  Instead of the $25.00 usual fee, our group would get a fantastic rate of just $10.00 (a 60% discount) and instead of having you fork over $15.00 for the optional Sword, Pirate Eye Patch and Head scarf (all take home items), our kids would get them all for only $5.00!

Please keep in mind that while we are getting this special price for our "Special Needs" kids, family members are welcome to tag along at this same price, however since we can only fit 49 people in total on the ship, we would like to limit this event and exclude those kids who are not part of a family with a special needs child.  An exception to this would be a teacher of a special needs child who would like her children to come and accompany a child that she teaches at a special needs school, such as PBSA.  Thanks for your understanding in this regard.

Now here's the problem, We're not exactly sure how many people are interested and if we will need to do more than 1 Adventure, since We can only fit 49 43 people on a this trip so what we would like for you guys to do is to reply to this post with a: 

"Yes, we can go on June 10th - there will be X of us" (Please include everyone, Mom, Dad, Siblings)...  or:

"No, could we have a second trip on the following weekend - There are X of us".  Once we have enough of an interest for the first trip, that will help us determine if we should have a second one. 

Edit... It looks like there's just not enough interest in the first trip to warrant a second one, which is too bad because the kids will definitely have a blast and there's quite a few parents that have told me that they would like to go, but simply can't make this date.  Perhaps in the future we will organize another event, but at the rate this is filling up it looks like we'll probably end up with around 40 people, not quite a full ship.

As of May 24th there are only 17 spots left, so please make sure you go ahead and fill into the Comments section if you're going, or go to our Event on FB and click that you're going and add in the Comments section how many of you are coming.

Stanford Study: NAC Shows Promise as a Treatment for Repetitive Behaviours Associated with Autism

We figured since there are really no negative side effects to taking this and it's simply a nutritional supplement.  We would go ahead and give it a shot, even before the bigger studies are out.  You can follow them on Twitter to get more updates on new studies.

BY ERIN DIGITALE

Antonio Hardan

A specific antioxidant supplement may be an effective therapy for some features of autism, according to a pilot trial from the Stanford University School of Medicine and Lucile Packard Children’s Hospital that involved 31 children with the disorder.

The antioxidant, called N-Acetylcysteine, or NAC, lowered irritability in children with autism as well as reduced the children’s 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, MD, 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 appears in the June 1 issue of Biological Psychiatry. Hardan is an associate professor of psychiatry and behavioral sciences at Stanford and director of the Autism and Developmental Disabilities Clinic at Packard Children’s. Stanford 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.

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Finding new medications to treat autism and its symptoms is 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. But these drugs cause significant side effects, including weight gain, involuntary motor movements and metabolic syndrome, which increases 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 drug manufacturer Bioadvantex Inc. 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, according to two standardized measures of autism mannerisms and stereotypic behavior, children taking NAC showed 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.

Although the study did not test how NAC works, the researchers speculated on two possible mechanisms of action. NAC increases the capacity of the body’s main antioxidant network, which some previous studies have suggested is deficient in autism. In addition, other research has suggested that autism is related to an imbalance in excitatory and inhibitory neurotransmitters in the brain. NAC can modulate the glutamatergic family of excitatory neurotransmitters, which might be useful in autism.

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.”

Hardan’s collaborators at Stanford were Lawrence Fung, MD, a psychiatry resident; Robin Libove and Surekha Nair, MD, social science research assistants; postdoctoral scholar Tetyana Obukhanych, PhD; Lenore Herzenberg, DSc, professor of genetics and member of the Stanford Cancer Institute; and Rabindra Tirouvanziam, PhD, a former instructor in pediatric pulmonary medicine at Stanford who is now at the Emory University School of Medicine.

The research was supported by a grant from the Escher Family Fund at the Silicon Valley Community Foundation. Herzenberg and Tirouvanziam are listed as inventors on two patents for NAC used for treating cystic fibrosis that are licensed by Bioadvantex Inc., which supplied NAC for the trial. Herzenberg also has equity in Bioadvantex.

Information about the Stanford Autism Center at Packard Children’s Hospital and the Department of Psychiatry and Behavioral Sciences, which also supported the research, is available online athttp://autism.lpch.org and http://psychiatry.stanford.edu.