WIPEOUT Liberty's New Favorite Song

Now if we can get him to do this on the drums...

Food as Medicine

I have been grappling with Liberty's symptoms again.  We are still dealing with yeast, can you believe that?  Three years now and it's basically because I did not understand anything about it and no one else did either. I thought you take antifungals, limit sugar and you're done.  But that is not true.   He was put on Diflucan for 5 straight months and as soon as he was taken off, the yeast returned.  His doctor at the time did not do any testing for oxalates which are the byproducts of yeast and content of certain foods.

My new DAN/neurologist performed an OAT test (organic acids test) that showed high arabinose, a byproduct of Candida along with very high oxalates.  Oxalic acid is also a byproduct of yeast.  Oxalates are the things that cause kidney stones.  They are not good to have.  They can circulate through the blood through a leaky gut and cause irritability.  Oxalates can rob calcium from the body.  Great Plains Labs where we get our OAT done has a whole printout on the role of oxalates in autistic symptoms.  So, to get the oxalates down, we were given a list of foods high in oxalates.  But it is not just food that can cause it; as I said it can come from chronic fungal overgrowth. Couple that with inadequate probiotic intake and you have a recipe for misery and ill health.  A stool test my son took at the same time showed he had ZERO Lactobacillus, a friendly probiotic needed for digestion, in his GI tract.

Here is a little bit about oxalates I copied from a great naturopathic website: A significant number of children on the autism spectrum have excessive urine oxalate levels. It is theorized that these oxalate crystals can accumulate in and damage body organs, including the gut, brain, skin, heart, tendons, kidneys, bones, and eyes. Oxalates are also known to bind with heavy metals, forming complexes that may be deposited in body tissues.  Symptoms of oxalate damage include digestive pain, toe walking, eye poking, skin lesions, urinary pain or frequency, bed wetting, and sandy stools.

Lib has had sandy stools, the bed wetting, and I have seen some eye poking, occasionally.  I have seen crying and posturing that looks like his abdomen hurts.  Fungal overgrowth also can cause constipation. 

Last night, I began reading a book I was given at least a year ago.  It is written by a nutritionist and it has some recipes in the back, but I did not pay it much attention.  My track record with dietitians and nutritionists is not very good.  Most of the ones I am familiar with in my own life only focused on calories and not quality of foods.  Judy Converse's book is called Special Needs Kids Eat Right.  And let me tell you, Liberty's problems are all right there on the page.   I cried, thinking that I needed her years ago when this whole damned thing began.  My son stopped eating after all of the vaccinations he was given at 13 months of age.   Lack of nutrition is not good for a developing brain.  I did not know what to do at the time.  Pediatricians were no help here, and they still aren't.  We have one we go to only when I need someone to look in Lib's ears or swab his throat.  Anything I bring up he just brushes away conveniently as "an autism thing."  It feels bad to be swept aside from their radar because they don't know what to do. 

In her book, Judy Converse says that one of the reasons we see supplements work for a little while and then see behaviors and reactions crop up even though they are on the very supplements in which their lab work says they are deficient, is because their guts are not working to begin with.  If there is still dysbiosis, all of the supplements in the world will be of no help.  Some kids have bacterial overgrowth (usually Clostridia or Klebsiella) along with the fungal invasion.  She says that nutrition through food is the key.   Natural antifungals and antibacterials, low oxalate foods, offending allergens, all of that needs to be identified and dealt with first AND to make sure kids are getting adequate nutrition from the food they do eat in the form of enough calories from quality food.

Did I mention that Judy recovered her own child using her knowledge of nutrition?  Her article below is eye-opening.  The things she went through with doctors and the absurd things said to her, well, we can all relate to as parents of children with special needs.  I urge you to read her article below.

I can say that my son's diet is so limited I am sure he is not getting adequate nutrition.  I have focused so long on being careful he is gluten and casein free, even though his allergy tests all came back NEGATIVE, and he does not have a lot he likes to eat anymore.  Many of the gluten-free products are full of fructose and MSG in its many forms (natural flavors, maltodextrin, yeast extract to name a few).    I have no one here monitoring his weight or looking at a growth chart or any of these things.  And, he is so picky.  I know it is a vicious cycle because if I could get a handle on the dysbiosis and get some good nutrition in him, his appetite would increase as his picky behaviors reduce.  I know she is right because I saw this happen for a limited time on prescription antifungals.  But the problem with those, long-term anyway, is that they can make the yeast return with a vengeance when they are stopped and you have to monitor liver function tests.  My son's liver just does not need to be taxed anymore than it already is.  There are plenty of natural antifungals out there to use.

I have begun Liberty on Candex and am adding in natural antifungals like Oregon grape, olive leaf extract, garlic, lomatium, etc.  I will update on the blog how he is doing.  It is trial and error as I find a rhythm with this. Oh, how I wish Judy lived in my town! 

I am thinking of ordering this cookbook when I get some more money.  Another wonderful blogger friend sent me the link to it.

The article by Judy Converse can be read at the link below.  I am going to be looking more and more at my son's diet in the coming days.  I hope this post helps someone because I finally figured out, we cannot just patch our kids up with supplements, and, even though we think our food is depleted nutritionally because of our environment, it STILL is the best medicine as my father always told me.  He should know.  He's a very heathy almost 93-year-old!

Judy Converse's post at Age of Autism

Judy's website

Nature Soothes

It's been rough on us not being able to go to the Gulf and swim in the normally healing waters of ocean and  sound.  I have been so grateful for the pool over at my father's condominium.  Two grandkids have learned to swim in that pool.  The landscape around the pool has changed with past hurricanes.  It used to have so many tall pine trees that there was barely space to walk between them.  Now, they are far and few between but still offer an ample canopy surrounding the pool.  Liberty loves to go fairly often and I have taken to floating on my back in the pool, my neck anchoring me to the side while I gaze up into the azure sky.  How often do we lie on our backs and look at the sky anymore?  Probably rarely.  Well, I have been practicing this sky gazing more and more and I cannot tell you the joy it has brought to me.  The tops of the trees, rich with squirrel nests and large, fat crows frame the view.   The overwhelming vastness of the sky with the almost blindingly-white passing clouds reminds me of the magnificence of my planet on which I ride.  Sometimes you can spy the outline of a tiny jet liner way up tracking silently across the sky.  When it's quiet (in other words, no one comes out with their obnoxious radio), you can hear the knocking of woodpeckers, the cawing of the crows, and the faint rustling of leaves.  Since Liberty learned to swim, it has been like heaven for me.  I can relax in the water now.  I can sit in a chair if I feel like it while he rides his purple noodle like a sea  horse around the pool and regularly rearranges the buoys at the deep water line.  But I am grateful mostly I believe for just the opportunity to be outside every day if we like, to swim in the water if we choose, especially in this heat wave, and to be nurtured by the natural world.  Now, that is a healing balm.

Hints from my darling Heloise

So, okay, I'm NOT a neatnik, nor am I really a total slob, but it was getting ridiculous around here. I have had zero motivation lately and could finally take it no more. I began the time-consuming task of straightening (actually sorting; I figured out that is what most of my life is about, sorting things into categories and them matching them to where they need to go).

I used salt and cheap hair shampoo to clean the bathtub. You cannot believe how great this combination works. And, no noxious odors. I used vinegar and water for all of the mirrors. And hydrogen peroxide for the sinks, toilet and counter tops. I posted something once about the wonders of H2O2 not too long ago when I was looking for an alternative to bleach and found the site Green Living Tips, too.

It is worth posting Heloise's site. She has many recipes for household cleaners using peppermint, lavender and almond oils added to bases of water, vinegar and hydrogen peroxide. Scroll down on the home page to her "Cheap and Green Cleaning Solutions." Click on "Hints" on the left side bar for a million ways to clean everything you own! I don't know why I get such a thrill out of this but I do. I hate the chlorine bleaches and harsh cleaning solutions.

Check out Hints from Heloise here.

This is on the Atlantic side

Visit msnbc.com for breaking news, world news, and news about the economy

The dangers of CFL light bulbs!

Looking for a Good Place to Move

I just got the inside tract on some information about what me and my family have known but had not been verified by any news station:  The water around here contains five chemicals and is unsafe for anyone to swim.  This comes from a source within a national seashore along the Gulf.

The quality of the air is anyone's guess right now.  All of that oily stuff is decomposing in the intense heat.  A member of my family came home with a headache that lasted all day after being at the beach for 30 minutes on Sunday.  The EPA won't commit to saying anything except that there is more particulate matter in the air.

The news station replies curtly, "If you have a headache, go to the doctor."

The report here is for the tourists:  They will always say it is beautiful, but beware.  As much as I would love to support the economy at the beach, it would be wrong to draw tourists here and put them and  their families in danger.

After working for so long on building my son's immune system, it would be wrong for us to stay in a place with the potential for so much harm.

Anyone know of a great place to live that offers excellent services for children with autism?  Sadly, the time has come to go.

I am officially open to suggestions.

Makes me cry...the Gulf is in my soul

When the coast is clear...

Happy Birthday Liberty!!

Today is my boy's official birthday:  He's 8 years old.   He had a wonderful birthday party this weekend in which the night before at Toys R Us, he chose all of his gifts.  This time, they were age-appropriate!  He wanted Hot Wheels and this was the first time he and his father got to spend time playing with the Hot Wheels track and racing all of his cars.  He also rode a bike all around Toys R Us so we got it for him and are picking it up today!   He was so cute because he knew all of his stuff was in the car.  He stood by the trunk waiting for us to open it.  The next morning the first thing he did was try to get us to go to the trunk and open his gifts.  So, when he was finally able to get them at the party, he was thrilled.

He said, "Hi!" to my niece.  He has been so calm and focused.  Last night he put all of his crayons in his crayon box he loves and brought them to me.  I got a piece of paper out and drew a butterfly on it and he colored on it!  This sounds simple I know but my boy usually stims constantly and takes things like cars and crayons and throws them over his shoulder.  He certainly would not be into playing cars with anyone.

So, what happened?  We started the MB-12 shots recently and saw some new things immediately.  I also am treating yeast chronically with Candex.  He's a carb kid and it is HARD to do the anti-yeast diet for too long, so I just decided to treat the yeast in the background and also changed probiotic strains. And we started LDN (low dose naltrexone) but I have not given that enough to where I think it has made a visible difference yet.

But, I don't know what it is exactly or IF it is anything at all I am doing!

All I know is that my son is so happy and calm and doing such age-appropriate things that I am absolutely amazed and grateful.  I do not have that panicky feeling that I used to have all of the time when he was so much smaller.   Sure, I wish he would talk.  He has some words he says in a very high pitched voice.  I know he knows how to talk and he certainly follows instructions very well now too so I know he has language.

It's very exciting to watch him unfold and blossom after all of the hell we have been through over the last five years.

My heart is full today!

Prayer for the Gulf of Mexico

Hope Beneath Our Feet

My sister and writer, Susan Feathers, is a contributor to this book that is coming out in September and available for pre-order, with authors such as Barbara Kingsolver, Alice Walker and Frances Moore Lappe!  Nothing could be more timely with the oil spill happening here in the Gulf.   Here is one review:

“Wonderfully uplifting and inspiringly diverse perspectives on aligning ourselves with the fullness of our own possibilities as individuals and as a species. The bottom line: flavor and savor every moment, especially the toughest ones, with not-knowing, with good will, imagination, kindness, wisdom, humor, community, and action. My father-in-law, Howard Zinn, said it so well: “Small acts, when multiplied by millions of people, can transform the world.’”

—Jon Kabat-Zinn, author of Full Catastrophe Living and Coming to Our Senses

Order your copy here!

It's that time again

What do I do when I get down, when my world seems shaky underneath my feet, while the oil continues to gush?  I watch Enchanted April again, the healing balm for my soul, while the back of my mind considers the  options. 

Double-Takes

It is hard to tell what has caused such overt changes in the space of one day.   We restarted Liberty's methyl-B12 shots today after being out of them since February.  The shots actually are a combination of the MB12, folinic acid and N-acetyl-cysteine (NAC).   About an hour after receiving the shot, he was extremely reved up which is not unusual to experience on any type of B-12.  Apparently, his body has to get used to this preparation all over again so, I gave him a capsule of a wonderful product called "Zen" (a combination of GABA and L-theanine) I had on hand specifically for side-effects of hyperactivity or jitteriness from the shot.  He calmed down pretty quickly.

And suddenly, after a long period of not being able to listen to music, he sat through the entire CD of Herb Alpert and would not let me turn it off.  He still had his hands over his ears, but he would get up and adjust the volume on the stereo and then go sit back on the couch. I was not allowed in the living room.  After that, he listened to Mozart and Vivaldi on You Tube.  He put 3 Mr. Potato Head dolls together instead of throwing the parts all over the room.  And he brushed his teeth independently like nobody's business.

This is remarkable.  Now, perhaps this change was already coming as I have been seeing some good things but mixed with a lot of mood instability.  For instance, the child has taught himself to swim.  He can swim on his back now like an otter all the while spitting water through his teeth in a long arc.  He can now swim to me fairly fast across the pool.  He can do the side-stroke.  He can balance in all kinds of ways on the swim noodle he would not have a thing to do with last year.  He goes under water and does not care if his face is dripping wet.  I never thought I'd see the day that would happen.  And I can sit in a lounge chair and not worry that my child will drown.

He also understands how to do things I had no idea he was even aware of.  He knows that to get the purified water on the tap you have to turn the PUR filter button a certain way. I never showed him that, nor did I know he was watching.  He knows how to do the laundry after only being shown once or twice.  He is waving hello, good-bye and following instructions usually on only one command.   He knows how the seatbelts in the car work.  He gathers my bag and puts my things in it:  Keys, glasses, hair brush, etc. and gets my shoes.  He gets the bag and knows to put my swimsuit and his in it and our towels and sunscreen.   He brings in groceries.  He washes his hands and throws paper in the trash.

This is not the child who was out to lunch not long ago.

With the intermittent mood swings that seem to come out of nowhere, I am thinking he has probably been having trouble processing supplements and detoxifying.  Methylation is an important pathway that is commonly blocked in our children. 

Somehow the shots had fallen by the wayside.  I think it was when we started his seizure medication.

Today, when we were sitting in a parking lot in the car, I dialed a number on my cell phone  (he hates it when I am on the phone) and he said emphatically, "Mom."

It has just been so hit or miss since I started down the biomedical path with Lib.  Dr. Bock used to tell me that recovery is never a straight line and that has proved true for us.  To see such a profound change in one day I think tells me that these were at least some of the missing ingredients his body needs to function well.  

I look at my almost 8-year-old son's tan little legs with the growing blonde hairs on them and the amount of muscle tone he's gained.  I smile at him and he smiles back at me!  How in the world could we not be on the upward swing now?

Saving the Turtles

Hop on over to D.J. 's blog today for something to feel good about during this oil mess.  She has been commenting on how many of the folks who are helping clean up the beach do not work for BP but they are still being treated as if they do, in other words, badly.  Can you imagine how that must feel?  Especially when they endanger themselves to heat stroke.  These are dedicated people.  Part of the problem is our local news.  They do not report the fact that many of the workers on Pensacola Beach are volunteers.

It is very strange around here.  Finally, the county posted warnings about swimming and stopped looking to the officials at the beach to call the shots.  I am thankful because, even though it is a shame (understatement) that tourists have cancelled their plans to come here, the water is NOT safe whatsoever.  If you are telling pregnant women and kids under 5 to definitely stay out, then it is not safe for anyone.  Someone who blogs here for CNN went to the beach yesterday and briefly dipped an aquarium filter into the water.  When she pulled it out, there was oily mousse, tar balls and other debris COVERING it.  Would you swim in that?

Also, it was not reported that over 400 people who came to the beach when the officials were saying to come on down have reported to health agencies that they feel sicker having come to the beach.

Someone should close the beach, but the EPA is remaining silent. We all find this a little more than suspicoius.