Thermography...

Gavin and I had a fascinating experience this morning!  We met with a practitioner at Dr. Trish's office so she could do Computerized Regulation Thermography on Gavin.  This non-invasive test was something we wanted to do in order to find out if Gavin was affected by mercury and heavy metals.  We found that out and so much more.  If you want to understand what this test is and what it can be used for - click HERE.

We settled into Dr. Trish's meditation room and there we met Judy Roberson who would be administering the test.  We exchanged stories about our histories and found that we had a lot in common!  It really is a small, small world - and people truly are placed in your path for a reason.  I learn this lesson every day.

The test itself took about an hour and a half.  Judy places an infrared probe at different points of the body to test temperature.  

Gavin, as usual, was very sweet and compliant.  First she tests the points with his clothes on.  After that portion is over, we stripped him down to his diaper and he had to stand (pretty still) for six minutes.  Don't you know - he did it!!  I wasn't expecting that part to go well, but I guess I shouldn't have been surprised.  Gavin has always been instinctively cooperative when we're doing something to try to help him.

I explained to Judy my hunch about a certain thing - that there's something going on in his mouth.  Gavin has been banging his teeth for several years.  He also had a long history of constant grinding, which has slowed down this year - thank God.  And, he is very defensive around his mouth - especially on the left side.  I just felt like something was up.  His dentist has told me that his teeth look fine, but I'm skeptical.  Sure enough - the test came back showing that Gavin has severe TMJ.

Here are the final results of the markers that came up following the CRT testing:

1. Food Intolerance, Sensitivity 

2. Dysbiosis (Mycosis or Bacterial Infection) 

3. Side Alert 

4. Temporomandibular Joint, Vestibular or Neck 

5. Brain Toxicity/Solvents/Pesticides/Metals 

6. Thyroid (Hypo)

The food intolerance and Dysbiosis showed up as severe.  I found this interesting explanation of Dysbiosis:

When your gut is dysbiotic, this means that the “bad germs” (disease causing bacteria, for instance) begin to edge out the “good germs.”  When the bad germs edge out the good germs, basic biological functions (such as digestion) begin to breakdown, and symptoms (like diarrhea or constipation) begin to appear.   Not all symptoms of gut dysbiosis are obvious.  Because gut dysbiosis can lead to any number of physiological problems throughout the body, it can be responsible for symptoms as varied as depression and asthmatic wheezing.

When a body is unable to effectively combat the bad germs in the gut (or elsewhere in the body) a state of immune dysregulation can occur. Thus, immune dysregulation and gut dysbiosis often occur simultaneously, and each can occur as a result of the other. Additionally, gut dysbiosis and immune dysregulation can both lead to mitochondrial dysfunction, a condition where the body’s energy production is affected on a cellular level.  Gut dysbiosis can therefore result in symptoms associated with mitochondrial dysfunction such as fatigue, low muscle tone, failure to thrive, motor delays and other complex health problems.

Perhaps this is why some of Gavin's labs showed possible red flags for mitochondrial disease!  His geneticist doesn't believe that he does, indeed, have mitochondrial disease - but maybe this dysbiosis in his gut is mimicking mito.  It's something to delve into.  I am going to be adding digestive enzymes to his regimen - and maybe consulting a nutritionist for help with an elimination diet to see if that helps him.  Judy explained to me that sometimes gut problems lead to teeth grinding.  Maybe simple changes in his diet can relieve his TMJ issues.

The Brain toxicity/solvents/pesticides/metals showed up as moderate - which wasn't surprising.  But the true test, which we haven't done yet, is through urine.  Judy will instantly be able to tell me Gavin's mercury and heavy metal load through his urine.  Collecting it from him will be my challenge over the next week.  Wish me luck on that one.  Hopefully I can get him to sit on a little potty seat long enough to catch it.

The Hypothyroid was a surprise to both of us.  That's something that I'll have to get checked with a blood test at some point.  We weren't sure what to make of that.  The whole point of these tests, besides checking for mercury and heavy metal toxicity, is that it gives you a guide to bring to your own doctor.  It can point out things before they become disease - which is amazing.  I don't recall what the "side alert" means at the moment - I'll get back to you on that one.

I'm sad - but excited about the results.  I don't mind the extra work that will come from these results - the dietary changes and all - but I just feel sad that Gavin has so much going on inside that we didn't know about.  I hate to think the diet that I think is amazing might actually be hindering him.  But I'm so excited that I found out about this testing and it gave me the information I need to start helping him now.  I'm pumped for the possible changes and progress that may come from all of this!!

That's Just How I Am...

We had a bit of a scare yesterday with Gavin.  He loves to shake his sippy cup, which we are trying to discourage as he ends up spraying milk all over the place.  So a month or so ago we gave him a little water jug with a handle to play with and shake while he's drinking.  It's a plastic water bottle with a pull up spout.  He loves to shake it to watch the water slosh around.  Gavin is fascinated...mesmerized...in love with water.  It definitely solved the spraying milk problem and all was well.

Until yesterday.

I was sitting right next to him and we had just finished a meal.  Gavin was drinking his milk and shaking his water jug when suddenly he put his head down on the table.  He wouldn't let me lift him up to look at him... and then he started to cry.  The kind of cry that tells me something is very wrong.  I picked him up and carried him to the floor and I realized what happened.

My worst fear.

Gavin poked himself in the eye.  

I could see the white of his eye turning red and I yelled for Ed.  If you are new and don't know why I would freak about something like this... read THIS entry for an explanation.  Gavin had a corneal abrasion over a year ago that was so severe that he nearly lost his eye.  I am very over-protective about his eyes.  It doesn't help that this little boy sleeps with his eyes open, so he's especially vulnerable at night.  To this day, we put eye lubricant in before he goes to bed - just to keep his eyes moist while he's sleeping.  As a side note, he inherited this odd feature from his Daddy.  When Ed and I got married and were sharing the same bed, I remember talking and talking to him for hours as we laid there.  I thought, "Gosh, he is the BEST listener!!"  And then.... I figured out the truth.  

Anyway... I nearly took Gavin to see his eye doctor at duPont yesterday for an emergency visit.  But he calmed himself down and was fine for the rest of the day.  But today, Sara reported that he was fussy at school.  And when he came home, he was just "off."  When dinner time rolled around and I saw his eye getting red again, I called the hospital.  If it's still looking bad tomorrow and he's still acting "off" they want me to bring him in.  You can see what looks like a fine hair or a fuzzy stuck to his eyeball and you want him to blink it out - but I think that's actually a scratch.  The doctor said it should heal on its own and to keep it lubricated like we have been, but boy am I getting post traumatic stress just thinking about this again.  What we went through with his eye trauma before was no joke.  We had to put ointment in his eye every two hours around the clock... at times it was sutured shut with a shoelace stitch, so I had to unlace it to put the ointment in and then lace it back up... need I say more?  It was awful.

So I panicked yesterday.  I didn't show it - but I was panicking.  That's just how I am.  Can you blame me?

I got a question from a reader about the "Mercury Theory."  She wanted to know if I really, truly felt that all of Gavin's issues stem from mercury and if I am a little bit 'cuckoo' for talking to a medium and having Gavin take supplements.

Fair question.

So, yes.  I am a bit cuckoo.  I think, in fairness, that's already been established over and over.  Like... every day.  I'm 42 and I excessively use puffy hearts on facebook status updates and comments.  I can't help myself... because, like I said, I'm cuckoo.

But, as far as the mercury... no.  I don't believe that this is the sole reason for Gavin's issues.  Do I believe that it's part of it?  Yes.  I absolutely do - and I look forward to seeing changes in him as I combine the slow detox with his sessions with Dr. Trish.  I believe it because I've experienced mercury issues in my own body.  I was mysteriously ill - had my mercury fillings removed - I got better.  I know there's something to it.  But I don't believe that it explains everything for Gavin.  However, using the supplements - especially the very small amount - and making changes to his diet is something that won't hurt Gavin.  Ed and I have always maintained that we will be open and willing to try anything to help our sweet boy as long as it doesn't harm him in any way.  I will still be taking him for further testing and I am counting down the months (and years) until he's eligible to get into the Undiagnosed Diseases Program at the NIH.  

Yes.  Cuckoo.  I am overprotective of... and over the moon for... and overwhelmingly determined to help Gavin.

That's just how I am.

**p.s. - if you're wondering the outcome of the Parents Magazine Blog Competition, I did not win.  The "Best Blog" was "Single Dad Laughing" and it was well deserved!  I absolutely feel like the winner, though. The amount of exposure and help I've received because of that competition is something I probably couldn't have done on my own. Thank you to all who voted for me!  It meant so much to have your support and validation.**

Sailing Through The Weekend...

We've had such a busy weekend!  It seemed to sail right by!

On Thursday, after I picked Brian up from school, I surprised him with a "Love Bomb" date!  The two of us went to a local diner right around the corner from our house. I told him he could pick anything he wanted from the menu.

He asked for pancakes and strawberries...and that's just what he got.  This diner, "The G Lodge," has a bit of history in our little town!  M. Knight Shyamalan filmed a portion of his 2008 movie, "The Happening," in this diner.  Actually, I have been in line at Wegman's with Mr. Shyamalan's personal chef a few times.  Suffice it to say we have very different grocery orders.  

When it came time for dessert, the waitress asked Brian if he'd like ice cream.  She said, "Would you like vanilla, chocolate or strawberry?" and Brian paused for a second before saying with a big grin, "I'd like MOOSE TRACKS please!!"  We all cracked up - it came out of nowhere.  This child has never had Moose Tracks ice cream in his life!  Much to our surprise, they had it!  So.... Moose Tracks it was. Brian and I have been replaying "Vanilla-chocolate-strawberry-MOOSE TRACKS!" and giggling all weekend.  And then, on the way out, we put fifty cents in the crane game - the one that I am NEVER EVER lucky with - and Brian won a toy on the first try!!  It was such a fun date.

On Friday, Gavin, Brian, Miss Sara and I went for a long, overdue visit to Dr. Trish!  Gavin and I were treated in one private room - and Dr. Trish treated Brian in another private room while Sara stayed with him to watch.  This was Sara's first time meeting (and witnessing) Dr. Trish and she loved it.  At the end of the session, Dr. Trish told me she kept being led to Brian's mouth and asked me if he hurt it somehow or had been sick.  I couldn't believe it. He had just told me the day before that his mouth hurt.  I think he must have bit his cheek or his tongue.  Dr. Trish has such a gift.  Brian's mouth has been fine since!

The best part of the appointment was when I told her about our plans to remove the mercury from Gavin's system.  As soon as I mentioned what the medical medium had told me, she broke into goosebumps.  It just so happens that she is making changes in her practice to include homeopathy and treatments just like this!  And she told me she had just read a case study the night before our appointment about a young child that was on life support.  They were  making plans to remove support and let him die when an intuitive came in and diagnosed him with mercury and heavy metal toxicity.  They were able to treat him successfully - and he recovered.  

Nothing is ever by accident.  As you know, we have a long history with Dr. Trish and she has helped us so much.  I am going to have her monitor the supplements that Gavin is on (and me, too!) and we'll be going back to regular treatments with her during this whole process.  She also has connections with a woman who does testing for mercury and heavy metals.  I was all set to figure out how to send our blood and urine to a very expensive lab in France - but now I have someone local that can not only test us, but offer us guidance and support!  I'm so thrilled.

Ed and I and the boys spent most of Saturday out of the house.  The boys had their mop tops transformed from this...

...to this!  The shortest I've ever had Miss Silvia go.  Total buzz cuts - even on the top.  I love it!

We went straight to Granny's house from there.  Ed helped her set up a new TV while the boys and I had fun scouring her house for treasures.  She's preparing to move and as she cleans out cabinets and closets and attics and corners, she is finding treasure after treasure.  In her dining room buffet, she found a teething ring and rattle that was given to me when I was born from our good friends in Maine, the Kilbreths.  If you can see, it has Kathleen Marie engraved on the rattle.

She also sent Brian home with a ton of treasures!  One of which was a Watercolor Paint set which he has been playing with all day today.

Hopefully he will inherit his Granny's artistic talent!  One of the other treasures...perhaps my favorite... was an oil painting she forgot she ever had!  She moved an old filing cabinet in the basement - and underneath, perfect and intact, was this gorgeous painting of her's!  I hung it in Brian's "nautical themed" room and it looks perfect.

Our entire afternoon today was consumed with cooking.  Together, Ed and I made 29 quarts of food for Gavin.  We made Yams, Quinoa and a Veggie Stew which contained parsnips, peas, carrots, celery, leeks, corn and the newly added cilantro as part of his mercury detox.  

Our house smelled amazing and I'm still shocked that our food processor didn't blow up.  We definitely put it to work today!  Gavin wanted to be part of the process several times throughout the afternoon.

Since we saw Dr. Trish on Friday, Gavin's walking has greatly improved.  It's quite shocking to us that he was just casually walking around by himself all weekend.  He just takes off!  Check it out...

I'm pretty confident that seeing him walking around will never... ever... get old.  

We are so lucky.  And we know it.

Fascinating Discovery...

I mentioned in yesterday's post that I had contacted a "Medical Intuitive" named Anthony Williams. Basically, he's  a psychic who can tell you what's wrong with you. We wanted to see if he had any insight into what might be going on with Gavin. I'll admit that Ed and I are open to these types of things.  Sure, there are some quacks out there - "Boardwalk Psychics" and people who take your money - but there are also people who really have a special gift.  Not knowing which one we'd encounter yesterday - we really took a chance.  A $350 an hour chance.  We figured we had nothing to lose...except $350.

(Please read this post for an update in 2016 BEFORE contacting him!!)

Anthony Williams told me that he believed Mercury was Gavin's issue.  And mine, too.  That I passed on a mercury sensitivity - along with actual mercury - to him in utero.  That it caused neurological damage and even explained his features, or birth defects.  He told me his suggestions for supplements that I could give Gavin to help eliminate the Mercury slowly and safely from his system and he really thought we'd see great improvement from Gavin rather quickly.

I wasn't a total disbeliever yesterday.  But I wasn't sure I was totally "sold" on the idea.  I would definitely say I was intrigued.  The way I saw it, giving Gavin supplements and making small changes in his diet couldn't hurt him.  And I knew my next step would be to consult Dr. Kang, our acupuncturist immediately.  She has successfully tested the boys for allergies before and has not only been 100% accurate with her non-invasive muscle testing... but she helped me to ELIMINATE Brian's peanut allergy.  (Much to the shock of his traditional allergist)

After school today, Gavin and I headed to see Dr. Kang.  I explained the entire situation to her.  The blog competition - the influx of traffic - the tons of suggestions and referrals - the "medical medium" - and the mercury theory.  She seemed a little bit skeptical of the medium, but agreed to test both Gavin and me for mercury.  Sure enough - Gavin and I both tested for mercury.  First she had me hold a vial representing mercury in one hand while I held my opposite arm straight out in the air.  She pushed down on my arm with all her strength and asked me to try to keep my arm in the air.  I could barely keep my arm up.  Then, still holding the vial, I had to hold Gavin's hand.  She would test him using me as a surrogate.  This time, I had ZERO strength when she pushed down on my arm.  Looks like Gavin has it worse than I do - the mercury has to go.  Dr. Kang told me to get both of our blood drawn to test the mercury levels, so I'm looking into the best ways to do that.

Is this it?  Could this be the "diagnosis" I've been searching for?  I really don't know.  Ed and I are both on board with working to remove the mercury from my body AND Gavin's and see what happens - knowing it can't hurt.  In the meantime, however, I will still pursue other avenues and genetic testing.  It's very possible that Gavin has a mercury issue and a genetic disorder on top of it.

I've already started Gavin on the supplements today!  Anthony recommended that he take the following:

Liquid B12 - He told me that Gavin uses up more B12 in his nervous system because he has to work much harder than we do.

Liquid Zinc - This will support his endocrine system and boost immunity.

Hawaiin Spirulina Powder - This is to support his brain and nervous system.

Liquid Ginkgo Leaf - Not as a "memory booster"... but to support his neurological system.

Melatonin.  We have been giving him Melatonin routinely at night for the last two or so years and had no idea it had other benefits besides to help him fall asleep!  Gavin really needed assistance - otherwise, he'd be up every night playing in his bed until midnight!  Anthony said that Melatonin acts like an anti inflammatory agent in the brain.  It also helps repair nerve damage and electrical impulse issues.  I feel good that we might have been "helping" him without even knowing it!  Gavin also had a head start with nutrition thanks to Dr. Coralee Thompson.  I consulted with her when Gavin was a baby and she designed an entire nutrition and health program that he follows to this day.  She ended up writing a fabulous book that I highly recommend - "Healthy Brains, Healthy Children" - whether your child has issues or not!

As for his diet, Anthony simply suggested decreasing the fat somewhat and increasing sugar.  He told me that Gavin needs ten times the amount of sugar (natural sugar - not candy or juice) than 'normal.'  He expends more energy to do things and overworking his electrical impulses.  We generally add butter to every pureed meal he has - so we will just substitute that with applesauce.  He also told us to increase his fruit intake in general and to add cilantro to his veggie stew.

I've added "Zeolite" to my regimen.  I took the first dose this morning and - holy cow.  Let's just say it has already started to work.  Trust me.  You don't want to know the gory details.

These are all very easy things!  I'm really excited to see how Gavin progresses over the next few months.  I hope you are, too!

Over the weekend, Gavin shocked us by deciding to walk more than he ever has.  He was even turning himself around on his own to walk in a different direction!  I was too busy hovering over him to grab a video, so Miss Sara took one for me today.  Check out these two videos...and prepare to be amazed.

If Gavin is making this much progress now... can you even imagine what's ahead a few months from now?  I can't wait!

In other news... Brian has been kicked out of school!!

He has been attending a pre-school for help with his speech delay since January of last year.  He really loves it there - and we love his teachers, his speech therapist and his little friends.  But he really hasn't "needed" the extra help for quite some time, so the news didn't come as a shock to me.  I'm so grateful to his teacher, Miss Laura, and his speech therapist, Miss Maggie, for how hard they worked with and cared for him.  I'm currently "pre-school" shopping if anyone in the area has any suggestions or referrals!

I have a feeling before you know it Brian will be reading to Gavin... and Gavin will be complaining that he wanted a different book... and soon I'll be telling the boys to stop fighting with each other and to "keep it down"... and all my dreams will have come true in a big happy ending with a bow on top.

Thank You...

Today is the last day to vote in the Parents Magazine Blog Competition...up until midnight tonight... and I have to say, I'm relieved.  I am tired.  I am grateful.  I am glad that it is over.  And I am proud that I accomplished what I set out to do - bring as many eyes and smart minds and tender hearts here to try to help Gavin.

My writing has always been about Gavin.  To be honest, I often feel that my life's purpose has always been about Gavin.  I was sent here - and he was sent to me - so we could heal each other.  And we will. And maybe in the process we will help heal others, too.  

There's something about this little boy with the sweet smile and the fierce determination that has captured more than just his family's hearts.  I feel honored to share Gavin with the world.  And I truly mean the world.  Here are some of the countries you all visit us from...

Having all of you here means more than just a rising visit counter and collecting flags.  It means I learn from other parents who have travelled this road... I learn from medical professionals with advice to share... and, most importantly, I am reminded that I'm not alone.  Having a special needs child can be quite isolating.  You all have been the greatest company - whether you've been here over the last five years or just the last five days.  

The added exposure here has gifted me with new friends, wonderful suggestions, interesting referrals and a list of different syndromes and disorders to present to Gavin's medical team.  One of the referrals was to a medical intuitive, Anthony Williams.  I just finished an hour consultation with him and it was fascinating.  (Please read THIS UPDATE before you consider contacting Anthony Williams!!! A LOT has changed since I wrote this post) He is sure that I have high levels of mercury in my body - and that I am highly sensitive to mercury, which is causing my medical issues.  He also said that the majority of my miscarriages (I've lost 9 babies to date to miscarriage) were due to mercury toxicity. (Darcy's death - my 10th loss - was a true cord accident) This makes sense to me.  In my twenties I was very sick and no one knew what was wrong with me.  I was so weak that at one point I had a short stint in a wheelchair.  Luckily, we have a family dentist who has a holistic approach and he insisted that my mercury fillings needed to come out.  Out they came - and sure enough I quickly got better.  Anthony Williams thinks that Gavin has the same sensitivity as I do - and suffered from mercury poisoning in utero.  He told me that it can cause birth defects and neurological issues and it's not something that would show up in chromosome testing and we never thought to test it through blood work before.  There are supplements I can start adding to Gavin's diet (and mine) to start pulling the mercury out of his system - and won't harm him in any way in the process.  He sees Gavin making tremendous progress... walking and talking and eating... and living a long life.  The way I see it, working on removing mercury from our systems is something we can easily do while we continue our conventional quest as well.  It can't hurt!  I will be calling Dr. Kang, our wonderful acupuncturist, tomorrow.  I bet she'll be able to muscle test Gavin and me for mercury - and maybe she can help us with balancing our bodies and removing it at the same time!

I am so grateful for all the love and support that has come my way because of (and before) this competition.  And I'm grateful to those who voted - some every single day!  I know how busy life is so thinking of you taking the time to click into a site and vote for this blog - it's humbling.  Thank you.

And I want to thank the editors of Parents Magazine.  Thank you for choosing me... the girl who uses "..." and exclamation points entirely too much.  The girl who pours out her soul and overshares on a regular basis.  The girl who used your competition to expose her son's medical mystery to the world without having him sign a HIPPA form.  The girl who tweeted Snooki to "Vote for Chasing Rainbows."  (I'm sad to report she never tweeted me back.)

I am grateful for the validation that you gave me along with the nomination.  Validation that I should keep on doing what I'm doing.  That I should keep on working hard to help my children be the best that they can be using any means possible.  Readers may reach for tissues when they come to this site... 

...but you should all know that the Leong family is reaching for the stars.