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Agape PDF Print E-mail
Written by Gayle Nobel   
Wednesday, 06 June 2012 18:09

Apparently Agape means love.

I was not familiar with the word until I bought a bottle of this amazing vitamin for Kyle. I had been told by a couple of sources, including one of Kyle's doctors, that it could be helpful for Kyle. It also meant we could eliminate part of the handful of supplements he takes with each meal.

I have written about Kyle's debilitating cycles. Beginning in July of 2010, he began having cycles of agitation/anxiety so severe they completely shut him down for 10 days, sometimes more. He was housebound and quality of life was severely impacted. Out of respect, I don't go into the details. These cycles made an appearance every 14 days give or take a day or two. They came regularly by the calendar, often by the moon cycle.

We have battled these on and off since he was 11. We have never been able to find a medication which has a significant impact. It has been the "alternative" stuff that has seemed to make a difference. Up until July of 2010, he had not had one for five years. We were surprised, when for no apparent reason, they reappeared.

During the past two years we have played medication roulette and have experienced partial results (but not enough), lack of results or lack of results plus adverse affects. We've even had/have some of the best doctors including a thorough work up at Mayo Clinic.

About three months ago, we were at a fork in the road. Which intervention should we try next? Having just finished weaning off a drug which produced adverse affects, I was not quite ready for another one.

Welcome Agape.

The results were not immediate. I think Kyle had one more cycle before the change took place. In his history of success with "alternative" interventions, there was always one more cycle.

This time, we were just getting ready to add another alternative treatment because we didn't think the Agape was having an effect. Waiting for the other supplement to arrive, we realized he had already gone a few days past his "due" date. We decided to hold off on adding the other supplement.

"Each extra day is a gift." This quickly became our mantra. Five extra days was a plus 5 and on it went. As we got up into the 20's I began having trouble keeping track. We were celebrating each day and loving the fact that Kyle was truly living.

The days rolled by. Kyle continued to feel well. In fact, Kyle was not just feeling well, we were seeing "Kyle PLUS". He was doing new things, noticing new things, breaking out of familiar patterns on his own, and wanting to be engaged more than ever before. Most importantly he was/is very very happy. Hmmm, was all this an added bonus effect of Agape? Or just the upside of life and learning without regular interruption?  Perhaps some of both.

Monday marked two months that Kyle has been cycle free. We still see each extra day as a gift. We don't know what the next day will bring. After such a rough two years, I almost have to pinch myself to realize this is not a dream. This may sound dramatic but the intensity of the cycles compared to the peace within Kyle now, is truly amazing.

What's so special about Agape? Isn't it just a vitamin? I'm going to get a little scientific here. Thank goodness for copy and paste. If you want the full scoop go to: http://www.center4autism.org/agape/faq.html

Agape was developed by Cindy Schneider, MD here in Phoenix. Two of her children have autism.

Agape is a pleasant tasting liquid multivitamin designed for even the most sensitive individuals. Agape is free of gluten, dairy, corn, soy, food dyes, and artificial sweeteners. Agape is sold only in glass bottles, sweetened with Stevia and preserved with EDTA. This allows high level nutritional and mitochondrial support while avoiding reactions to plastic contaminants, food allergens, and harmful preservatives. Agape offers:

~~ Pure Ingredients in their most Biologically Active Forms

~~ Methylation Support To Enhance B12, Folic Acid And Glutathione Metabolism

~~ Mitochondrial Support For Optimal Neurological Support

~~No Sucralose, Fructose, Artificial Sweeteners, Copper, Manganese, Iron, Antimony, Or Food Dyes

~~Highly Absorbable, High Potency Formula That Addresses Common Nutritional Deficiencies

~~Support for Methylation Defects in Autism Spectrum Disorders - The Gene/Environment Interface

Apparently, methylation is very important. I have been trying to find a simple way to explain and understand it. The full scientific article is found here: http://www.center4autism.org/therapyMETH.asp

I've copied below a few key points from the article.

"It has become increasingly evident that individuals with autism have impairments in their capacity to methylate. Methylation reactions are those reactions in our metabolism that involve the transfer of a methyl group (a carbon with three hydrogens attached) from one compound to another. These reactions are required for many of the most vital pathways in our metabolism. The building or repair of every cell in our bodies requires methylation. The silencing of viral genes involves methylation. We must be able to methylate the dopamine receptor in order for it to bind with dopamine, transform lipid membranes, change the frequency of brain waves, and increase our attention. The coffee addict craves caffeine, a methyl donor, because it causes a burst in focus and attention. An alarmingly large percentage of our pediatric population has been placed on Ritalin (methylphenidate), a methyl donor, for the same reason. Messages are not transmitted along neurons accurately and efficiently unless the nerve is insulated with a substance called myelin, which cannot be produced without methylation. The most commonly known defect in myelination (the protection of nerves with myelin) is multiple sclerosis, a condition in which anti-myelin antibodies are made. Anti-myelin antibodies are frequently found in children with autism as well.

A person who is less able to methylate may present with inflammatory conditions such as eczema, colitis, asthma, or arthritis, as methylation is also required to produce glutathione, our body's primary antioxidant. Anxiety and obsessive-compulsive tendencies are also common, as the production of serotonin, our anti-anxiety neurotransmitter, requires properly functioning methylation pathways. Serotonin then goes through a series of reactions including methylation and is converted to melatonin, the compound that allows us to fall asleep."

Some of my medical friends may be skeptical. But there are only two explanations. Kyle's cycles suddenly stopped on their own for no apparent reason. I suppose that's possible but seems unlikely as the pattern was so solid for so long. OR the Agape is having a positive impact.

Kyle takes his Agape twice a day and I'm not about to change a thing. He also takes a supplement of extra methylated folate in capsule form each morning as a booster since he's such a big guy. Agape is loaded with other  nutrition besides the folate.

The people who work with and love Kyle are amazed and delighted at the changes we've seen in him. Each extra day is still a gift. What a great stance toward life.

Last Updated on Wednesday, 06 June 2012 18:49
 
The Mind Body Connection, and Exercise PDF Print E-mail
Written by Gayle Nobel   
Saturday, 26 May 2012 00:31

I'm baaaack! Well, sort of. It's been awhile. I've been on a writing sabbatical but hope to get back to my blog as of.... this blog.

One of my fans shared a blog with me. Ido in Autismland is written by a non-verbal young man and is very, very powerful. I love what he says about exercise. It confirms what I have seen for a long time.

Kyle just got a new treadmill. Sometimes he is resistant or has trouble getting himself together while using it. However,  I see how much he seems to need it.  Now I have extra confirmation that it's ok to push a little.

ABOUT IDO: I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second on becoming a free soul. I had to fight to get an education. Now I am a regular education student in 9th grade. I communicate independently by typing and pointing to letters. I am getting good grades with no academic modification and I am a writer of autism adventures.

Here's what Ido has to say about The Mind Body Connection, and Exercise

This morning I was edgy. My electrical currents were coursing through me. In Autismland that means either do stims or temper. It is a stressful time for me and it is hard to be calm, but I can't freak out just because I'm stressed. This is what my family did to help me: first I worked out with weights. I complained non-stop. Then my mom insisted I go on the treadmill. I lasted fifty minutes including running on and off. It is amazing. I feel normal now.

This summer we have decided to concentrate on fitness because my body needs to listen to my brain better. If I could have a trainer every day, how would I improve? I wish I could do that, but we have to work out even without a trainer because it is important that autistic people wake their mind/body connection. It is not do-able if the person is not using his body in exercise ever.

I recently hiked with many autistic people. It was short. Maybe a mile, but it had a hill at the start. I saw many turn back after five minutes. They were not used to moving enough. My new goal is to get fit this summer and see if it helps my brain too.

 
Technology and the Morning Scramble PDF Print E-mail
Written by Gayle Nobel   
Thursday, 03 May 2012 19:42

I drove to Prescott, AZ last Friday to be on AZ TV's "The Morning Scramble". They mailed me the video clip since it was not online for viewing afterwards.

I had a few tech issues with getting it to YouTube. Ok, more than a few. I finally resorted to using my IPhone to video my laptop playing the interview. How's that for desperation?!? I could not get it to crop properly afterwards either. This is my way of apologizing for the quality. But I still want to share the interview. Here ya go.

Click here.

 
Gift of a Flat (tire, that is) PDF Print E-mail
Written by Gayle Nobel   
Wednesday, 02 May 2012 14:20

Yesterday we had an adventure. When I pulled my car out after music therapy, I discovered a flat tire. Darn! I had just put a piece of gum in my mouth to stay alert for the long drive home.

On Tuesdays, I have a defined agenda for most of the day. I leave the house at 12:45 to pick Kyle up from his program at 1. We drive an hour to get to OT (occupational therapy). After OT, comes music therapy and from music therapy we drive another hour to get home. Occasionally we get stuck in traffic, but usually it's a smooth ride in the HOV lane.

If I have been a good girl, dinner is waiting in the crock pot. I am only good 33% of the time, if that, so often I scramble to throw something together or pick up Chinese food for Kyle and scramble for our dinner. (I like Chinese but the salt gives me a food hangover the next day.) We have dinner without lingering too long and then head to Kyle's horseback riding. It's the longest day of the week, for sure, but very much worth it. When Kyle is feeling well, he really enjoys all these activities. And I enjoy watching him enjoy.

Upon discovering the flat tire, our normal agenda came to a halt. The myth of control is always temporary, isn't it? AAA told me it could be almost 2 hours before roadside assistance could come to help. In the meantime, Kyle's music therapist was called to the scene and he was already figuring out how he could change the tire for me. Did I need anything for Kyle? What could he do to make things as smooth and comfortable as possible for him? Kyle was sitting in the car, ready for the drive home, and as calm as could possibly be. He was clearly feeling good after his musical infusion.

When I told AAA my son with autism was with me and it would be difficult for him to wait that long (dinner bell!!), she put me on hold, talked to the powers that be, and told me there was a person in my area and it would be no longer than 45 minutes. Amazing how that works.

Apparently, there is a secret compartment in the back of my van which releases the spare tire which is under the car. I did not remember it from the previous time. Rich, Kyle's therapist, did not know about it so we determined it best to wait for AAA. It was really nice of him to want to try, though.

Kyle was beginning to sweat. It's already hot in Phoenix so we went into the OT waiting room. It was busy and noisy but Kyle was in the best place ever to be able to handle it. His OT and MT were angels bringing him water and making sure we had what we needed and Kyle was comfortable. This kind of change in routine, particularly at dinnertime, can be super stressful for a person with autism. On this particular day, Kyle was floating through it. I remained calm too. There was no reason not to be. I was grateful we didn't get the flat tire on the freeway.

AAA got the job done, minus putting air in the spare. Roadside assistance shows up with a broken compressor... hmmm. By the time we stopped for air, there was no reason to hurry home. Kyle got a meal at Wendy's out of the ordeal. Even though it was past his dinner time, he was calm and pleasant. OK, pleasantly ravenous, but still very pleasant. It was a long day. We got home late, but safely, and that's what counts.

The "Kyle stars" were well aligned to make this an easy event. He is capable of being flexible with life. Awesome. The therapists at Lauren's Institute were above and beyond helpful and supportive. Awesome (though not surprising). I recognize that unexpected events don't always go this smoothly. I am grateful. It's nice when life works out.

I write this from Discount Tire. It turns out that besides the nail in the tire, it was also damaged and will be replaced for free. However, the other tires are worn and in need of replacement too. Apparently, it has been 5 years and 60,000 miles on this set of tires. Time does fly when I am driving the mom-mobile.

Considering the long drive on Tuesdays and an upcoming summer road trip, replacing the tires is a good idea. The flat tire turned out to be a gift. How about that.

Last Updated on Wednesday, 02 May 2012 21:39
 
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