I’m back!

I have taken a long break from writing posts for my blog or actually replying to comments. I apologize for the long delay for some of you on your questions/comments. As you know, even the strongest warrior moms need a break…so I took one. I’m replying to comments each day and hope to be caught up by the end of the week. Next week I hope to start writing again. Stay tuned to hear about our experience with yeast and leaky gut issues (yet again!).  I’m really into whole foods and diet changes, so look for posts about that and how to incorporate it into your child’s diet.

Cheers!

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What do you think the ramifications will be? I wonder.

http://news.yahoo.com/experts-weigh-changes-definition-autism-170206958.html

So mental health experts are messing with the definition of autism and the diagnostic criteria. My mind boggles with what that will mean to the future children being diagnosed, and the children already diagnosed today. How will we be able to accurately track the rise in autism rates and apply research on a potential environmental contributing factor if we throw this monkey wrench into the mix?! And down the road in a few years,  the news reports will  say that autism is on the decline and some government agency will take credit for it. Not because of changes made to our environment or perhaps improved treatment options…but because the diagnostic criteria has changed.

What will this mean to children already diagnosed and receiving services that no longer qualify based on the new criteria? Does it mean they no longer need services because on paper, they don’t have autism, just Aspergers.  What would have happened if this new criteria was around when my son was diagnosed? His diagnosis was high-functioning autism. Would he have received a diagnosis of autism and qualified for the much-needed services he has received over the years? I credit biomedical intervention AND behavioral therapy for his huge gains since his diagnosis.

I’m sure there is some good news in all of this somewhere.  Maybe for the insurance companies that would have to provide services in the states that have adopted insurance reform. I don’t know about this one. I’d love to hear from you and what your take on it is.

What is Normal?

I haven’t written a post in a while and thought about which topic to start with first. But I’m thinking an update on all the good things that have happened over the past several months is deserved. Life has been pretty good, busy and somewhat “normal”. But what is normal in the life of a family overcoming autism?

Well, for starters, both my sons are growing like weeds. I can’t keep enough food in the house, let alone in their stomachs.  My preteen son eats more than both my husband and I combined. His shoe size is a men’s 10 and is already 5’6″ at age 12.  I think I’m actually spending more money on groceries and his shoes each month than vitamin supplements. And that’s a lot!

My younger son with autism went through 35 treatments (dives) of hyperbaric oxygen therapy (HBOT) this past summer. It was tough to keep up the treatments at a facility that was an hour drive away from home (each way). We saw immediate gains after the first 10-15 dives. His expressive language was soaring and his eye contact rocked! We slowly saw improvements come gradually during the remaining dives. His gut was improving and bacteria died off.  Focus, attention and eagerness to have friends come over for play dates all improved. We continue to see steady improvement each month. It’s very gradual and he just seems to do better and better each week. HBOT stimulates the growth of new blood vessels and increases blood vessel diameter which improves circulation to damaged organs (his brain). This process continues for up to six months once treatment is stopped.
I am proud to announce that both of my boys are now first degree black belts in Taekwondo! It is such a huge accomplishment for them, especially for my son with autism. He had to learn to focus, stay at attention, do numerous kicks, blocks, punches and all eight Taekwondo forms. Each form has 18 steps in them which must be done in sequence. He also had to break boards with punches/kicks five times during testing. Not an easy thing for a child that started classes three years ago, with lack of attention, focus and just plain disobedience to his Taekwondo Master. He also feared board breaking, mostly due to the sound it made. He is doing awesome in class now and a lot of the parents keep telling me what a different boy he is today, verses when he began. I could tell they wanted to say that he seemed “normal” now, but held back because that would be an odd thing to say.

So what is normal in the life of a family overcoming autism? My boys argue over inane matters, are competitive with each other, vie for their parents attention, go to school, do homework, have friends and have overcome a lot in the past four years. Our normal may be a lot different from other families. Autism will forever touch our lives. We deal with it each and every day. Some days we see it more than others…sometimes not at all.

Summer is over?! But it’s only mid-August!

I have had a crazy, busy, summer this year and have not found time to blog all summer long. I miss it. My kids go back to school next week on August 17th and that marks the official end of summer for them. Where did the time go? Well, mine and my son with autism’s time went to hyperbaric oxygen therapy (HBOT). We had to get 40 sessions in this summer without taking breaks longer than 3 days. Our days have been spent in a big metal tube, watching DVDs (I read a book) and driving back and forth for an hour each way. I’ll blog about our experience next time.

Right now, I’m still trying to get my head around “back-to-school”. I have to confess. I’m in denial. We have not bought one iota of school supplies, clothes, backpacks…oh, the stress of doing this the day before school starts! See, we are cramming in the last of HBOT sessions this week and then leaving on a much needed family vacation to a mountain lake for 5 days of camping. It was that, or stay home and prepare for school by dragging some unhappy (whinny) boys from store to store. Nope! I opted to procrastinate.

You may wonder how my son with autism will feel about my lack of preparing him for the start of school. Well, we will find out on August 17th. Yes, sometimes parents of children with autism have to “wing it” and just see how their child adapts. I believe he needs to be exposed to the unexpected by not being front-loaded with information all the time. Sometimes going off the therapy curriculum is OK so your child can see that life isn’t always carefully planned out, prepped and non-stressful.  My son is very high functioning and he can deal with these unexpected things thrown at him most of the time, so it may not be for every child on the spectrum. I’m just putting it out there for all parents with kids on the spectrum to consider trying at least once in a while; especially if they’ve always controlled their child’s environment.

My summer can’t be over. It hasn’t really started yet, so I’m going to have to enjoy mine starting August 17th. Am I the only one out there that hasn’t had a “summer” yet?

Cuckoo for Coconut Kefir

I have heard parent’s success stories about helping their child with autism recover with diet and the healing benefits of coconut kefir. So I researched it and found that it is a rockin’ probiotic drink and offers much more than good gut health. Here is the dish on this hard to find, expensive drink.

True coconut kefir is derived from young, green, coconuts from Thailand. (1st obstacle in making this drink) The coconut water is combined with kefir starter to create a nutritionally dense, probiotic rich, non-dairy, drink.

What is Kefir?

Kefir is a starter culture made from gelatinous white or yellow particles called “grains”. The grains ferment the milk incorporating their beneficial yeast as well as friendly “probiotic” bacteria, to create the “cultured” product. The grains are then removed (by straining) before consumption and can be used again.

The naturally occurring bacteria and yeast in kefir combine symbiotically (I love that word!) to provide excellent health benefits when consumed regularly.

Kefir can be made from any type of milk, cow, goat, coconut, soy, or rice. For the lactose intolerant population that cannot digest cow or goat milk, kefir provides lactase, an enzyme that consumes the left over lactose after the culturing process. Therefore, lactose intolerance should not stop anyone from consuming kefir dairy products.

What is the Difference Between Coconut Water and Coconut Milk?

This one had me so confused. From what I’ve researched, coconut water is the liquid that comes from the young, green, coconuts. Coconut milk is derived from extracting the meat of the mature coconut which contains a lot of fat and calories. This fat is not as bad as it sounds though. Coconut oil is 92% saturated fat. Don’t freak out yet! It’s approximately 65% (two-thirds) medium chain fatty acids (MFCA). Most all other fats and oils (saturated and unsaturated, plant or animal based) are mostly long chained fatty acids (LCFA). LCFAs are the fats that accumulate in your fat cells, and clogs your arteries. Your body needs pancreatic digestive enzymes and bile to digest LCFAs and they circulate in your entire body. MCFA rich coconut oil/milk does not need these enzymes or bile to digest. They are readily digested and go straight to your liver, boosting your metabolism.

Benefits of Coconut Water Kefir

  • It increases energy and provides a feeling of good overall health
  • Aids in digestion, heals the gut with high levels of probiotics
  • Reduces sugar cravings
  • Contains high levels of minerals like potassium
  • It cleanses the liver
  • Eases aches and joint pain
  • Improves skin tone and complexion. Will help with acne, age spots, skin tags, moles & warts
  • Strengthens hair, skin and nails
  • Beneficial effects on the endocrine system (thyroid, adrenals, pituitary, ovaries)

Where to Purchase Coconut Kefir

So now you want to know where to get coconut water kefir, right? Well, there are not a lot of companies out there that sell it already in its cultured state. You can purchase young, green, coconuts and use a kefir starter culture to make your own. Or pay a lot of money having it shipped to you from the handful of companies out there that make it.

I found two sources of true coconut water kefir on the internet that I would trust. Body Ecology sells their brand of CocoBiotic beverage for $28.98 for a 44 oz. bottle and $14.95 for an 8 oz. travel size bottle. They also sell their starter culture packets if you want to buy young, green, coconuts and make your own coconut water kefir. A box of 6 packets cost $26.95 and each packet can be used an average of 7 times each. Their website is http://www.bodyecology.com.

The other source that was brought to my attention is CocoKefir. This company was founded by Michael and Holly Larsen whose daughter was diagnosed with autism.They credit her recovery in part to the implementation of a biomedical approach to healing her gut first, which in turn helped heal her mind. They sell their 16 oz. CocoKefir bottle for $9.99. That’s $0.62 per ounce vs. Body Ecology’s 44 oz. bottle at $0.66 per ounce, and their 8 oz. bottle cost $1.87 per ounce. Their website is http://www.cocokefir.com.

There is a third option out there. It’s not coconut water kefir, it’s cultured coconut milk. Remember the difference, water comes from young, green, coconuts and the milk is derived from the meat of mature coconuts. But the milk has the MCFAs, of which the water does not. So Delicious makes Cultured Coconut Milk with prebiotics and probiotics, made from organic coconuts. They have original (unflavored), chocolate, strawberry and vanilla. The original one is best since it does not contain any added sugars that only feed the bad bacteria and yeast in our gut. A 32 oz. bottle sells for less than $4.00 and can be found at Whole Foods. You may find it in your local grocery store, but I’m not sure the cost.  We have tried it and we have noticed benefits from drinking it. Digestion has improved, the obvious benefits from the prebiotics and probiotics, plus it gives us more energy. I like it mixed with a little orange juice, but my sons will only drink it in a smoothie. I know I’m adding fructose from the fruits I mix into it, but it still has helped them tremendously.

I am purchasing a bottle of the Cocobiotic coconut water kefir and plan on seeing if we experience a true difference from drinking the So Delicious Cultured Coconut Milk. I’ll keep you posted on the results. If anyone has experience with these products or has other information to share, please comment below.

To watch Michael Larsen of CocoKefir interviewed on Fox & Friends click below:

http://youtu.be/cfmNhA_D3mQ

World Autism Awareness Day 04.02.11

Five years ago I was unaware of how autism affects families. It wasn’t talked about in the mainstream media like it is today. There wasn’t a World Autism Awareness Day until four years ago. When I think about how autism has changed our family’s life over the years, I am grateful for a lot of the adjustments, and others, not so much. In keeping with the positive, on this day I’d like to share the good that has come from my son’s diagnosis.

  • Awareness. I have learned to stop what I’m doing when my son talks to me, get down to his level and look him in the eyes. This gesture helps him in developing his conversation skills, and helps me to slow down and give him my full attention, which he deserves. I’ve also become a much more aware parent of my kids…where they are, what they are doing and how they feel.
  • Patience, patience, and did I mention patience? Any parent of a child with autism understands the importance of practicing this virtue. I work on it every day and will have fully acquired it by the time I’m 90. (I hope)
  • Knowledge. If it weren’t for autism, I wouldn’t have researched diets, artificial food additives, organic foods, and the importance of eating healthy, whole foods for our body’s fuel. Prepared foods are minimal now, and they are free of all the junk that most commercially available “food in a box” contain.
  • Friendships. Not only have I cherished every friendship my son with autism has gained over the years, but I have benefited in this department as well. If it weren’t for autism, I wouldn’t have met some wonderful people who have become true friends that I cherish each day.
  • Courage. This one is a biggie for my son and me. My son shows his courageous spirit every time he overcomes the fear of trying something new that may seem overwhelming to him. I have found the courage to fight for what he needs in every aspect of life, and have learned from my son to face my fears as well.
  • Volunteering. Helping others understand how they can help their child through this blog. I am so blessed to be able to reach parents, caregivers, and family of children with autism and help them along their journey.
  • Understanding. Autism has taught me how to teach my son an understanding of his world. By doing this, I have gained a tremendous amount of understanding for other people and their “issues”.
  • Gratitude. I’m grateful for the little things in life. Like my son’s first “why” question, whenever he asks another child to play with him, his hugs and kisses, when he looks me in the eyes, and when others tell me how much they adore him.

Autism has changed my life and the lives of many families around the world. Take a look around you and you’ll find someone who is affected by autism. Either they have a child, sibling, relative, friend, co-worker, or neighbor affected by it. Or perhaps that person you watch and wonder about has it too. Please keep in mind the positives and learn from it.

HBOT Isn’t Just for Michael Jackson

Hyperbaric oxygen therapy (HBOT) has been around for decades and the healing properties of it have been utilized by many doctors, researchers, athletes, and yes, even Michael Jackson. My first impression of HBOT was when I learned how it helped scuba divers with the “bends”, or decompression sickness, which occurs when the diver surfaces to quickly and nitrogen builds up in their body. It’s very painful and can even cause death. The treatment is to quickly get them to a pressurized chamber and have them breathe 100% oxygen.

In the 1980’s Michael Jackson started napping in a HBOT chamber to reap the health benefits and to preserve his youth. Seemed sort of creepy and strange to most everyone, and made you believe that HBOT was only for the wealthy. Star athletes, like Lance Armstrong, and major sport franchises have their own chamber to aid athletes in recovery from injury quicker.

What is HBOT?

Hyperbarics is a technology in which the air pressure in the environment is increased.

Hyper means increased and baric relates to pressure. Hyperbaric oxygen therapy (HBOT) thus refers to intermittent treatment of the entire body with 100-percent oxygen at greater than normal atmospheric pressures.

HBOT involves inhaling 100% oxygen at greater than one atmosphere absolute (ATA) in a pressurized chamber.  The air we breathe at sea level is defined at 1 ATA. Low pressure/mild hyperbarics uses 1.5 ATA or less. When a person’s body is placed in a more pressure environment, it absorbs more oxygen molecules per volume of compressed air. The body normally transports oxygen via the hemoglobin of the red blood cells. By increasing the air pressure, oxygen is then driven into the body’s fluids, allowing a super-saturation of the tissues and organs with oxygen.  The increased pressure infuses the body with oxygen, even reaching injuries with damaged circulation. An example of this is a blood clot in the brain (stroke).

What are the benefits of HBOT?

  • It greatly increases oxygen concentration in all body tissues, even with reduced or blocked blood flow.
  • Stimulates the growth of new blood vessels to locations with reduced circulation which aids the body in its own healing process.
  • Increased oxygen greatly enhances the ability of white blood cells to kill bacteria.
  • Reduces inflammation in the gut and brain
  • Increases blood vessel diameter greater than when therapy began, improving blood flow to compromised organs.
  • Reduces oxidative stress
  • Reduces swelling at injury site
  • Removes toxins such as heavy metals from the body

Why HBOT for autism?

Multiple studies have shown that autism is a neurodegenerative (a loss of nerve cells/death of neurons) disease that features cerebral hypoperfusion, brain and GI inflammation, and increased oxidative stress. Hypoperfusion refers to decrease blood flow. Numerous studies on children with autism have shown decreased blood flow to the brain, especially in the temporal regions.  The temporal lobes are responsible for speech, memory, emotional responses, auditory and visual processing, and olfactory (sense of smell)).  This hypoperfusion is associated with many core symptoms of children with autism.

Decreased blood flow to the temporal lobes has also been correlated with an “obsessive desire for sameness”, “impairments in communication and social interaction”, and also with decreased IQ. Decreased blood flow to the temporal lobes and amygdala has been correlated with impairments in processing facial expressions and emotions and trouble recognizing familiar faces. Decreased blood flow to the thalamus has been correlated with repetitive, self-stimulatory, and unusual behaviors including resistance to changes in routine and environment.

Cerebral hypoperfusion causes hypoxia (or decreased oxygen), which triggers electrical failure in brain cells. Worsening hypoxia then eventually results in ion pump failure, which ultimately leads to cell death. Studies have shown that the oxygen delivered by HBOT can reverse hypoxia in brain tissues caused by hypoperfusion.

Inflammation is a known cause of decreased bloood flow.  Research has shown us that when the GI tract is inflamed, so is the brain and immune system. It’s the triad of the gut, brain and immune system that are susceptible to inflammation if one of the three is damaged. HBOT improves gut inflammation by killing off the bad bacteria. Bacteria thrives on an oxygen deprived environment. When infused with oxygen, it dies off.  Therefore, having a good probiotic on board, anti-oxidants like vitamin E, selenium, glutathione, and melatonin are recommended during HBOT treatments.

HBOT has improved symptoms in children with autism including enhancements in socialization, language, and repetitive behaviors. The GI tract improves, inflammation is reduced/eliminated, better sleep and improvements will continue months after treatment is concluded.

Hard Chamber or Soft Chamber?

This question is dependent on the child and doctor’s assessment of need. The hard chamber provides 100% oxygen at 1.5 ATA.  The soft chamber uses room air and an oxygen concentrator that delivers 28% oxygen at 1.3 ATA.  Less pressure, less oxygen concentration. Both chambers have shown effectiveness in eliminating symptoms of autism through studies.

The advantage to the soft chamber is parents can purchase or rent them for their home. This becomes more feasible for families that don’t have HBOT providers close to home. And all members of the family can be treated in the comfort of your own home. Plus you can take electronics into a soft chamber, so a game system like my son’s Nintendo DS will help occupy his time.

The number of treatments range from 40 dives to 80 dives. Each treatment is one hour. Most clinicians recommend at least 40 dives. Improvements may be seen as early as 10 dives, depending on the child. The recommendation is to have 40 treatments over 8 weeks. That’s 5 days/week with weekends off.

Cost of HBOT session range from $100-$150 per session. It is not for the faint of heart when committing to this financial investment in your child. I’m still investigating the cost of renting a soft chamber, so that will also factor into our decision on which chamber we’ll use.

Why HBOT for our son?

Well, the above information I provided is one reason. The main reason I am pursuing this therapy is that my son with autism suffered from obstructive sleep apnea from the age of 9 months to 2 yrs 10 mos. His sleep study indicated hypoxia, which means he is a perfect candidate for benefiting from HBOT. I believe he has brain cells that are “idling” right now and will get turned back on with the oxygen infusion. He also battles gut bacteria, low glutathione levels, and heavy metal toxicity, which will be reduced/eliminated with HBOT.

We have not determined which chamber we will pursue. A hard chamber is available to us, but is a one hour drive from our home. It takes approximately 15 minutes in the chamber to get to the pressure level and then each session is one hour. 15 more minutes to come back to normal pressure, resulting in a total of 1.5 hrs inside the chamber. Add to it the 1 hr drive to and from and our HBOT treatments now will take approximately 4 hours out of our day. We anticipate to start in the summer, with the break of school. The soft chamber rental is still an option that we are investigating. Both options appeal to us and we need to determine what is best for our child and family.

If you’re thinking about HBOT for your child, there is a ton of information on the internet and the research with children on the autism spectrum. We’ve been wanting to do this treatment for 2 years now, and 2011 is the year we will achieve this goal.

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