Monday, May 30, 2011

Book review for a fabulous mercury recovery memoir

When I was contacted by author Aine Ni Cheallaigh, to review her new memoir, “Getting the Mercury Out”, I admit to having selfish reasons for wanting to read it.  As a fellow-mercury poisoned reader, I knew I would identify with her, but little did I know that I would connect with her experiences on so many different levels...even areas of my life that I didn’t know to relate to my own mercury exposures.  I never could place a finger on my anxiety and uncontrollable distress during my college years.  Considering I had 8 of my 9 fillings put in when I was 14 years old, my deteriorating moods suddenly made sense!

By page 9, I was already hooked.  I felt as though I could feel her words coming from my very own mouth, right down to the self-diagnosing!  The paragraph below particularly hits home:

“In later years, when I learned about mercury toxicity, I read about how the first symptoms manifest as subtle emotional changes.  Depression creeps in.  There is an unwarranted sensitivity and irritability.  Emotional reactions become less reasonable, even as the mercury toxic person insists that their reaction is a totally logical response to their circumstances.”

I also had a good laugh when she described how the sheer number of pills she had to take daily didn’t fit into her pill organizer.  I struggle with my own pill organizers every time I try to cram all those damn pills into the little cubbyholes they were intended to fit into.  It’s clear that these organizers were not made for mercury toxic people!  I love that she brings humor to everyday annoyances that can sometimes seem so disturbing to the mercury-toxic brain.  A sign of a good author is one who can strategically force a smile on your face even while sharing a serious account of ill health. 

By the time I reached her recollection of the nightmare commonly known as the “dump phase”, I was confident that I was looking into the crystal ball known as my future.  Although I already know to expect this phase, I didn’t know how devastating it really could be.  It’s clear to me now how the sum of such symptoms combined with a child’s neurological development and smaller organs would equate to an autism spectrum disorder diagnosis.  Aine herself experienced something that put her squarely on the spectrum, temporarily! 

I feel better equipped to weather the storm ahead now.

Aine delicately balances the intrigue of her personal story with the dark facts surrounding mercury poisoning, combine that with how to successfully heal from this devastating illness and you have a powerful story with purpose.  Once a non-believer in alternative healing herself, she eloquently shares the intricate details that turn her around, making her such a believer in alternative health that she wants to shout it from rooftops....or store shelves, lol. 

“Getting the Mercury Out” is an easy and interesting read, the story kept my interest from cover to cover.  I found myself reaching for the book whenever I had a few precious moments to myself and before I knew it, I was passing the book to my husband encouraging him to read it so that he would better understand what I am facing, since this ultimately effects him as much as it does me.

If you suspect heavy metal toxicity in yourself or a loved one, this book is a great place to start.  It is also a nice memoir for those who would like to identify with a story similar to theirs.  I have read multiple mercury poisoning books, but they tend to be technical and hard to follow for a beginner.  “Getting the Mercury Out” will encourage you, inspire you and educate you in one fell swoop.

Click here for a Kindle version of this book

Sunday, May 29, 2011

Mold madness!!

As if the issues we already have going against us aren't enough, it feels like this mold problem doesn't have an end in sight.  We've had the major construction done, and temporarily, that was relieving....but it's not over, not even close!  It's all but consuming me and my thoughts.

We have an entire 1500 square feet of basement FILLED with crap, yup, crap, so you know what that means?  Dumpster!  But why can't we find one that delivers to our town?  Ugh, one of the many battles to be figured out this week, it's on my to do list, along with trying to determine, if we are going to clean our basement or if we can afford to hire the mold company to come back and do it.

Just call me the Moldinator!
The cost of mold remediation is exorbitant, it's not just the mold remediation company, but the builders who renovate the area where the building materials infected with mold were removed and the clean up involving everything that was contaminated by the moldy air.  Since the estimate just to clean our things was upwards of $4500, we decided to try to at least minimize the heaps of junk and keep (and clean) just the bare essentials, so today we covered up from head to toe using: full body suits with hoods, goggles, ventilator breathing masks, gloves and shoe covers and we weathered the storm in the basement in an attempt to clean out the small things that will go in the dumpster, by bagging them.  After two hours of sweating and fogging up our goggles (one word of caution, never toot inside of a full body suit!), it felt like we got nowhere, even though the pile of bags by the door is enormous.  Somehow it still feels like it's going to take hundreds of hours to clean it all out.  A dumpster will make it SO much easier.  I hate parting with everything, but we have to think of this task in terms of our health, so if it's not worth our health to keep it or it would cost more to have it cleaned than to replace it, it gets the, books, clothes, cushions, papers, upholstered chairs to match my kitchen set, a futon mattress, if it's porous, it's out!

So after we came out of the basement and had stripped our many layers, discarding anything disposable, took showers, and I then realized that it's pretty hot outside.....and I have NO shorts for Grayson for school this week. Guess where the summer clothes are?  In the basement we just came out of!!  DARN IT!  It's not as simple as tossing the gear back on and grabbing the box, but because the box was slightly opened already, the clothes need to be treated properly before they could enter the house too.  After a little research, I made a concoction of dry laundry detergent, baking soda, washing soda, borax and a few drops of cinnamon essential oil so that Dave could take the clothes to a laundromat.  Then he brought them home wet and now I am soaking the clothes in vinegar and grapefruit seed extract overnight, before I will wash them yet again, in the same concoction, before they will go anywhere near Grayson's skin.

And more bad news...there are possible mold speckles on the ceiling/subfloor wood in the basement in another area (not where they repaired) that is approximately 4x5 feet square.  Is this more mold or is this mildew on the building materials from when they built the house?  There is clearly no leak causing it, it's more superficial, like there is humidity in the air and the mold spores that are already down there could be setting up residence where the heat from the windows cause some humidity.  Either way, this means bringing the mold company BACK in here to deal with it...It's likely a quick fix, but I would LOVE to see an end in sight, and SOON!

To make matters worse, Grayson has been sick with a nasty cough since this all started weeks and weeks ago and now the rest of us have it too.  I hope it's just a coincidentally timed cold, but I can't help wondering, if we've contaminated our bodies causing irreparable damage.  

Where does this vicious cycle end?  It's controlling our lives as I write this.  I feel like we hit a dead end, as if there will be constant re-contamination now that we have opened our belongings up to the mold monsters.  The crazy thing is that this is not so uncommon.  Seems like just about everyone I talk to has had mold issues in their home at one point.  In fact, I personally lived ten years in a home with mold in the basement and walls.  I didn't have a compromised immune system like my kids do and perhaps this is all going to catch up with me now that I am mobilizing metals in the process of healing myself of mercury toxicity, but our kids don't deserve this.

If there is any light at the end of this dark tunnel, it's that chelation is actually used to treat those with mold toxicity, and the diet we are currently on already is part of the healing process, so maybe we are already two steps ahead of the game!

We have every intention of making the basement of our home livable again, properly, but it just might drive us into bankruptcy or the loony bin, whichever comes first!

Tuesday, May 24, 2011

Why does camel milk work?

The answer to that question is so complex, but I would bet it has something to do with the nutritional deficiencies our children tend to have as part of the complex myriad of symptoms they experience.  They have problems with absorbing nutrients, because of the landscape of their compromised intestines, and it's those very nutrients the camel milk provides in a "food" source, making them more bio-available to our immune-compromised children.  And that brings me to the camel nanaoglobulins that mimic the human immune system, literally!  They are minuscule in size by comparison, but look exactly like ours, their size allows them to cross through cells so when you drink the milk, you are filling your blood (and intestines) with these nanoglobulins.  This is equivalent to an IVIG treatment!!  For those who dont't know what IVIG is, here is a brief description found online:

"Intravenous Immunoglobulin (IVIg) is a solution of highly purified immunoglobulin G, derived from large pools of human plasma that contain antibodies against a broad spectrum of bacterial and viral agents. This solution is delivered intravenously and is used primarily to treat three categories of illnesses: immunodeficiencies, autoimmune neuromuscular disorders, and certain rheumatologic conditions."

IVIG is VERY expensive and very rarely covered entirely by insurance.  I have heard that out of pocket quotes often exceed $5000 even for those who HAVE insurance coverage for some of it!  And most people require IVIG multiple times.  Sure makes the camel milk look cheap, doesn't it? 

Camel milk is anti-bacterial and anti-viral.  It's a wonder why we get such great results when you combine all these traits in one power packed serving!  It MUST be raw to get these benefits! 

Speaking of results....lets talk about my kids.  We've been on the camel milk for 24 days as of today.  We were originally only using half of the recommended dose with each child daily and seeing a wide variety of improvements.  I want to know it's full potential though, so we are increasing.  I started increasing two days ago and we are now on a pint and a half a day, between the two of them.  Two pints would be about the recommended dose, give or take a few ounces.  It certainly isn't hard to get in them, they love it!  Yeay for that!  I don't have to squirt it, pop it open, mix it or pour it into them!!  And they enjoy it, something I gain pleasure in!  Our kids are troopers, they take concoctions of the nastiest tasting stuff on earth without a flinch!  So a treatment they love?! Sign me up!!

I just can't get over the changes with Grayson!  If you read my earlier entries about his aggression, his tics, his negativity, his inconsistencies.....itching, head swattting, bloating, sleep disturbances, severely emotional outbursts, my goodness, life was never dull around here!!  He was so volatile I wouldn't even sign him up for activities.  I was literally afraid of his behaviors, would he tantrum and cry uncontrollably, because he doesn't want to do something; would he freak out from lack of confidence; would he just completely resist participation?  We tried a few things like soccer and ice skating.  He zoned out on the field in soccer and he refused participation with ice skating.  I gave up and I am not a giving up sort of mom, but he had my endurance beat, I just couldn't fight another fight, nor was it healthy.

Fast forward to today, these are the traits I see in Grayson on a CONSISTENT basis now and yes, this is SINCE the milk!!
  • Amazing confidence!  He will try anything and although he hates failure (not a bad thing) he isnt' freaking out or hitting himself in the head over it.  He picks himself up (figruatively speaking) dusts himself off and moves on.
  • We've signed him up for guitar lessons and I am so impressed with him!  He is learning very fast, he is willing to attempt anything we ask him to try, he doesn't fight me when I ask him to practice (although it's in short spurts, lol, hey whatever works).  He is willing to "perform" the things he learns without hesitation.
  • He is happy every day, VERY happy and not the overly giddy kind of yeasty happiness, but a real genuine happiness. Coming from the deep, dark caves of anger that Clostridia brings, this is a HUGE and very welcome change.  There was nothing worse than watching our 5 year old wake up angry at the world, his pajamas too tight, clothes bothering him, shoes won't go on right, chair isn't even, everything was too something and the reaction was far beyond extreme, it was frightening.  I am so so so SO relieved to see this change so consistently!
  • He's interested in playing with Gavin who has a very challenging personality, but he makes it work most days lately.  There is often a lot of fighting, because Grayson is so controlling, but he has been slowly opening up to listening to Gavin (when I request him to do so).  In the past, he would stomp off, crossing his arms, yelling that he wanted to "be alone".  Now he is listening to me calmly and trying whatever I suggest.  Wow!
  • Compliance!!
  • His flexibility is amazing.  We haven't had any issues with transition at all.
  • Consistency - did I mention this AGAIN?  HAHAHA  In the past we have called him Jekyll and Hyde, because from one moment to the next, he would flip from happy to emotional, then angry, then giddy (too happy), it was an exhausting roller coaster ride to parent him.  He's consistent, he's happy, he's flexible and compliant.  This is what normal is all about!!
I am in heaven with these changes.  If I never saw another change in him for the rest of his life, I would be on cloud nine, diet and all.  It would be a bonus, if the camel milk can help with his sensitivities and leaky gut (which it is purported to do), but honestly, I don't know that I would be ready to give him gluten and casein back anytime soon anyway, but I would LOVE to be able to nix the low oxalate diet!!  And eggs, we would LOVE to get eggs back in the diet, especially, because his cholesterol was too low to begin with.  But this is dreaming and I am not a dreamer, I am a realist, I prefer to live in today.  Today deserves all of my attention.

Gavin is flourishing too, as you have probably read in previous entries about the camel milk.  He's just a fire cracker!  He's affectionate and powerful at once.  He's our little daredevil with control, loves to make people laugh, but is a lovey too.  He's kept all of his gains, but I notice that with him, when I increase the milk, we get a period of what resembles die-off.  His stools change, his temperament becomes less tolerant, and he becomes excessively hyper temporarily.  I am taking this to mean that he needs the increase and that we will need to continue to increase until this subsides.  Keep in mind that he has a virulent parasite and I am hoping the milk is doing something about that! I would expect some die-off with anything that could be working!

I can't wait to see what more camel milk brings!!  If anyone reading this has been on the fence about camel milk, I give you a resounding "TRY IT!"  Don't let this opportunity pass you by, you may never know what real healing is until you give it a shot!  My husband and I are even considering using it for ourselves, if we decide to stop it for the kids (as in done healing).  It's THAT phenomenal!

Wednesday, May 18, 2011

Who is responsible?

Think about it, think about the knowledge you have gained in the research of how to heal your child, the sheer number of parents you have connected with and even the suppliers for all of those umpteen pills you give to your child daily.  How did you find that fabulous DAN! doctor halfway across the state?  Have you asked yourself this question?

Well, of course YOU are responsible, right?  Yes, you have unequivicallly chased down the information you need and you most definitely have had to go against the grain to get answers.  But how has this been made possible....for parents to become their own "doctors"?

Turn the time back a few decades and imagine being a parent of a child like ours just ten or even twenty years ago.  What's missing?  Certainly bio-medicine was in existence, holistic doctors practiced medicine then too.  So what is the difference?  It's the internet!

What would we do, if we didn't have the world literally at our fingertips?  We wouldn't be finding fellow parents and building networks of thousands of people who aid in our exposure to the treatments and doctors available to us.  We have stretched our arms further than ever before, there is no rock left unturned, no doctor we don't have access to, and you have the internet to thank for that!

I am so grateful to be experiencing this journey at a time when I have such amazing people literally at my fingertips, because without all of you amazing bio-med parents out there, I wouldn't have known where or how to start.

But then, the question that begs to be answered becomes, if our children WERE born at a different time, would they be this sick?  Evolution sure has it's pros and cons, doesn't it?  Is the glass half empty or half full?

Sunday, May 15, 2011

Camel milk ice cream?!

Yep, it's so easy, tasty and provides all the raw nutrients of camel milk in a fun, icy treat great for the summer!  The way I make our ice cream also means sugar-free tastiness!

I am an immediate gratification kind of girl so we use the Cuisinart ice cream maker which literally makes your pureed mixtures into soft creamy ice cream within 30 minutes so you can plan and make your home made ice cream or sorbet with little planning, as long as you store the freezer bowl in the freezer.  It doesn't require any added ingredients either.

Recipe (pretty darn easy!)
1/2 a mango
1 banana
1 C. camel milk (or any raw milk of choice)
1/2 C. coconut nectar
3 Tbsp coconut concentrate (Tropical Traditions)
2 Tbsp fresh lime juice (Santa Cruz organic juices)

After adding the mango, banana, and lime juice to your blender, add a little water to the 8 ounce mark (I didn't measure how much water this actually is, lol) then add the coconut nectar and blend like a smoothie.  Add the camel milk and gently blend (it foams very easily which is why I leave it out for the high powered blending).  Pour into your ice cream maker and there you have it!!  Easy, healthy treats!  You could also pour the mixture into ice pop trays for an easy ice-cream-maker-free idea!  It will make a nice creamy Popsicle!

Ignore the major bed-head in this picture, lol.  The kids thoroughly enjoyed their healthy morning snack!

It does melt fast, but the kids enjoy using a straw when the thick stuff is gone.  I am curious to see how it freezes and then scoops.  Some of the ice creams that use a lot of water tend to get very hard to scoop after freezing, but this has very little water so I am hoping for a better outcome.  They will have more this afternoon, so we will see! 

UPDATE - It's hard to scoop into when it's frozen, so it needs a lot of defrost time, but unfortunately that also means less time to eat it, because then it melts fast.  The fix for this is to add some sunflower lecithin to the recipe before blending which will act as an emulsifier.  =)

Saturday, May 14, 2011

The ironies of camel milk

So I wanted to offer an update on the camel milk considering it's massive claims of being a health tonic.  We've only been using it for maybe a week total (with a break in between for a trip back home), but there are clearly changes with both boys.  The odd thing though, is that we are seeing some things causing mixed signals.  With the significant positive changes, we are also seeing some things that don't exactly fall into the regressive category, but most definitely not improvements....unless maybe increased awareness causes crazy wired behaviors.  It's almost hard to put words to.

The boys have reacted completely differently in many ways.  They both have had some similar changes too though, like their BMs.  Both had very strange (warning - graphic here) fluffy, chunky, floaty BMs for the first two days.  Then they went from that to absolutely perfect BMs!!  This happened both when we first introduced it and then again after our break and the reintroduction, with both kids.  The stools reminded me of the reaction Grayson had when he was on Flagyl for Clostridia.  That was the ONLY other time I saw such an odd, almost cotton candy-like stool.  So was it die-off of some sort??  It did come with some emotional behaviors.

Both have also been talking a whole LOT more, little jabber jaws, only problem is that they don't have the awareness (or maybe it's the volume control) to realize that their brother is also talking....AT THE SAME TIME!  It's getting exhausting, lol.  They are both so excited and happy, they are just babbling away uncontrollably, about everything!!  And while we are on the topic of speech, Gavin's vocabulary, cognition and sentences have just been out of this world while on the camel milk!!  While he is talking, the eye contact is amazing.  I love that his eyes are glowing in the process, so much innocence and excitement in them.  He is using words I didn't even know he knew like Tyrannosaurus!  He pointed to silly bands and called them wrist bands.  His word recollection and complete sentences are continuing to amaze us.  You can see his cognitive changes even in his new facial expressions.  For instance, when I catch him in the act of doing something wrong (which seems to be often lately) the past, he wouldn't have even looked at me, let alone reacted.  Now, he is looking me right in the eye with a face of shock, mouth open, stunned, like "oh shit", lol.  He's also using the phrases, "I'm sorry", "I missed you" and "I love you mommy" all at very appropriate times.  In fact, he's clever, when he's in trouble, he looks intensely into my eyes for a moment, as if he is reading my emotion and then he says, "I love you"....melts my heart!!  And his humor, oh my goodness, this kid has such a sense of humor!!  He's been so goofy, animated and interactive.  He's also listening to direction better.  In the past, if I asked him to pull up his pants or take off his own shoes, he would whine and cry until I came over to help him.  Now, one request and he does it, then when he has a twisted waist band or something, he says, "Mommy help me, please."  Wow!!  And I thought he was just a defiant soul.  We are seeing an awakening with him that we have never seen before, but it doesn't come without some difficult changes and I am not sure what to make of them.  For instance, he is suddenly into EVERYTHING.  I can't turn my head and let him out of sight for any period of time, he disappears and I find him climbing furniture with step stools, getting into my make-up, his diaper cream, things in the kitchen name it!!  Typical two year old curiosity?  Perhaps, and I welcome it, if this is the norm, but it doesn't make it any easier to handle cold-turkey!!  I wasn't eased into this change!  It didn't develop at a pace that broke me in, he woke up one day like this!  It's all so very strange to comprehend.  He certainly is playing more on his own now, but it now comes with a price.  Silence is my new enemy!  Lately he has more personality than I am capable of reeling in!!  We both need lessons on where the new boundaries will exist.

In the first two days of starting the camel milk, Gavin gained 2 pounds!!  I had weighed him just days before starting it (because I weigh him almost daily, lol) and then two days later his weight went from 27-29 pounds overnight!  I kid you not.  I kept waiting to see that weight drop thinking it would be temporary, but even when they were off the milk for a long weekend, it remained!  I had read about how it increases bone density and in studies it caused the same kind of immediate weight gain in a child from the absorb-able calcium it provides. 

Grayson has reacted so differently.  His tummy has stayed flat for the entire period!!  His mood is very calm, eerily calm, like a mature boy!  He still has periods of emotional outbursts, but they seem to fizzle fast and are always followed by immediate remorse.  It's as if he is acting out of habit and then realizes how wrong the behavior was.  He is telling us he loves us much more now, and hugging us a lot! He has even been able to verbalize his emotional needs.  He told me he needed more "mommy time" and was wondering why only daddy has time to play with him most days.  Of course, this was right in the middle of when I was making breakfast from scratch for both of them, before lugging him off to his bus stop for the day, lol.  I had to remind him of the days we spend together, guitar lessons that I take him to, the movie we just went to alone (he and I) a week ago, the books I read him, doing arts and crafts together, but of course, if he needs more of me, I want to fulfill his needs so I swapped bedtime duties with my husband that night (he put Gavin down) so I that I could put him to bed and spend more time with him.  We read together and goofed around, he laid on me and rubbed my arm while I read, we hugged and laughed and made funny faces.  I love that he felt confident enough to tell me how he felt and I hope he felt like it got a response.  He's our sensitive little guy, very emotional with both his give and take of relationships.  I am so proud of the development he is experiencing.

With both of them, the one thing I am having a very hard time with is how hyped up they get at night/bedtime and I honestly don't even know, if this is the milk or just coincidental timing.  It seems to be a trend that we see with every New Moon, which is two weeks before the full moon.  Gavin has also gotten severely bloated, the red ring came back again and his moods are becoming more volatile.  He's still been playing on his own pretty well, which normally isn't the case when he is going through a parasitic growth period, plus he has kept the gains we have seen with the camel milk, so it's been an odd combination of progress and regression.  Another thing we ALWAYS see cycle around the moon phases is potty training regression.  It's awful!!  He is going to be three in a month and a half, I can't believe how he just regresses so horribly around the New Moon, but it must have something to do with the Dientamoeba Fragilis.  We have to figure out a way to deal with this nasty bug, because naturals aren't cutting it.  I think we will retest, since our DAN! told us to try another couple of rounds of natural parasite cleanses and then, if they don't work, we can travel down the RX road.  Maybe the camel milk will help....HTH!

UPDATE on Thursday the 12th - I just cannot get over how incredibly aware Gavin is, and since this experience was very different from usual, I wanted to report it here.  Gavin and I have been going to music class together for weeks.  He has always just sat in my lap quietly while I participate in the singing and dancing.  Even my attempts to help him clap or sway were met with harsh resistance.  He hid behind my legs when people would talk to him, he was very intimidated by the environment. One thing he has always participated in was instrument use.  He would get very excited when instruments were part of the song, going into his own little world while playing along with the music.  But when participation involved following instruction, he would immediately shut down again.

We haven't been to a class since the week we started the camel milk, because we've had a lot going on with the house, so this was our first class since starting the milk.  I thought he would be even more reserved, considering the two week span since our last attendance.  I was pleasantly surprised with the exact opposite!  He had me stunned through every minute of the class starting with the minute he stepped through the door.  He greeted his instructor and two other class mates by name.  When one of the parents asked his son, if he remembered Gavin's name, Gavin promptly replied, "Gavin!" with a big grin on his face.  He was pulling me to sit, which is how we start.  He couldn't wait to get going, wow, already different!!  Instinctually, he started out on my lap, like usual, but then he looked around at the other kids sitting beside their parents and he plopped himself on the floor next to me, double-wow!  I have never been able to convince him to sit beside me.  Then the singing began and wouldn't you believe, this child sitting next to me must have replaced himself with my child, because he was Mr. Animated!!  He followed every single hand motion, lyric and step in the classroom!  I had to work hard to hold the tears back and I kept watching him in awe, loosing my own place in the songs.  I couldn't believe it, this was like night and day!  He even answered questions out loud, when no one else did.  He was proud to add his own lyrics to the songs when prompted.  I didn't even recognize him.  I could see his teacher looking at him through most of the class, even she noticed how "on" he was today.  He was happy, confident, and on cue.  He has never had another day like this before.  If this is what camel milk is going to do for us, I'm on board!

P.S. - he is now 30 pounds and holding it!!

Must watch videos on camel milk and how it heals

These videos deserve their own blog entry.  For anyone with an autoimmune disease, diabetes, autism, Chrone's disease, allergies, Hepatitis, tuberculosis, parasites, among many other diseases, this set of videos is a MUST WATCH!  This is mind-blowing.  We've seen incredible improvements with camel milk with both boys.

If you only have time for one video, choose #3.  The first video is the story from a woman whose son was healed of a devastating parasitic infection that was destroying his health.

Camel Milk for Health

Friday, May 13, 2011

Fitting in

As much as us biomed moms work extremely hard to help our children fit in, it's equally as ironic that WE don't fit in anywhere.  Biomed moms stick together like white on rice, because our lives are so incredibly different from others' and no one else gets us like another from the same world.  We are the side show freak at every event.

I ponder this thought as I sit here splitting our chelation capsules and wonder what other moms out there are doing this very moment.  I doubt they are splitting capsules for their families to take around the clock.  But I would bet that just about every other biomedical mom is doing exactly what I am doing and maybe even at this very moment, since chelation rounds typically happen on the weekends.  It's this craziness that ties us together with a bond that doesn't even require physically facing each other to "get" each other.  I think we would go to the ends of the earth for one another, literally.  We share a passion that runs deeper in our veins than our own blood.  It's this very passion that motivates us.

I know at least for myself, when I try to fit into groups of other moms, I find it so hard to relate to them.  As much as I would love to chat about karate lessons or school mishaps, our experiences differ so much that I can't even chime in.  Generally when I open my mouth to share my own version of our experiences, I hear the crickets.  There are two exceptions to this though and you can pick them out in a heartbeat.  There are the morbidly curious, the same people that rubber-neck at gruesome crash sites and then there are those who clearly see a connection in what we do, probably because they themselves are searching for answers, whether it be for a child, a loved one or themselves.  They are sincerely interested in the information rather than being intrigued by how very different we are.

One thing I hear frequently is, "I don't know how you do it!"  Again, I tend to wonder about the intention of this commonly heard phrase.  Is it that they truly give us credit for all that we do, witnessing the significant change we produce in our kids' lives or is it more like, wow, you are nuts and I wouldn't do what you do for your kids!

I'm sure there are some people who just lack the understanding, it's hard to grasp unless you have personally witnessed the change in our children.  If you are a parent who was lucky enough to have children born with health on their side, you probably just don't understand the concept of the behaviors we see in our children.  You can't understand what it is like to witness your child loose eye contact and pull away from you or when they take part in strange repetitive behaviors that scare you out of your skin.  Or perhaps your children aren't the healthiest either, but you just don't comprehend how some of the things we do can encourage such huge changes.  Either way, it's this lack of knowledge that puts you on the other side of the fence.  I love the parents who have an envy for the work we do, they give credit and watch in awe, but I'm sure they would never want to be in our shoes.  And as much as I would love to wash my hands of all this intense work, I would never want to change our past, because it has carved the path for our future and I have learned more through this experience than I could even put into words.  Our lives have truly been enhanced by the needs of our little ones.

There is nothing like watching our boys fit in, even if we don't, it's all because of what we do for them every single day of our lives.  It's our dedication, the work of going against the grain in every aspect of our lives that has offered them the chance at a normal life.  I would say that makes us pretty darn amazing.  If you are a fellow bio-med mom, take the time to pat yourself on the back for all of the selfless hours you research, cook and dedicate to your family, for the hours of intense pain you've experienced beside your child as s/he suffered the worst days of pathogenic overgrowth, die-off or food infractions and for the many sleepless hours of chelation you have under your belt.

It's you who is changing the world for your children.  Congrats!

If it's not one thing, it's another

We are glad that the majority of the mold work end is near and we've stocked up on more camel milk to last us for at least the next couple of weeks, but it never fails, as we sheer the heights of one hurdle, we find ourselves facing yet another, with barely enough time to take a breath between jumps. 

After having such a wonderful day yesterday, Gavin took a turn for the worse today.  He woke up in great spirits, but was craving tv horribly so I let him watch a few short shows.  He had an accident in his pants which looked like watery diarrhea that he couldn't control.  He finished on the little potty, because it was closest.  When I emptied it, I noticed that there were black thread-like things stuck to the sides and bottom of the bowl.  I've never seen anything like this in his stool before so I took a closer look.  They looked like worms, with tapered ends.  They were slightly thicker than a piece of hair and although they were so fragile looking, they were pretty hearty when I picked them up with a wooden skewer.  There were probably 5 or so of them in the bottom of the bowl after dumping the majority of what was in it, so I don't know how many were actually in the entire BM, and they ranged from 1-2 inches in length.

In my research, the only thing I could come up with that remotely resembled what I found in his stool was blood flukes (other than banana fibers, but he hasn't had them in almost a week)!  They terrify me, because they can travel throughout the body and prefer to reside in organs like the liver, intestines, lungs and brain where they do their damage.  They can cause seizures among other scary things, if untreated.  With Grayson's lengthy coughing problem, I worry about them in the lungs!  Parasites are so contagious that it would be silly to assume that Grayson isn't also infected with whatever this is. I sent a picture to their doctor to see what he thinks.  I am sure he is going to recommend a stool test, which most likely won't find anything unless we pay for a special lab that has the technology to test for these specialized parasites....and frankly, with all the work being done on our house (and no idea of what it is going to cost), the cost of the camel milk, having two birthday boys' parties around the corner, two trips to Connecticut back to back....there just isn't anything left!

What baffles me is, if these are parasites, why are they coming out dead?  Could it be that the camel milk is killing something or is it that the camel milk has caused them and everything else we use is killing them?  I would think they couldn't grow and show up quite so fast though, we only started the camel milk about a week and a half ago, plus the came owner just had testing of his camels the week before we bought our stash.  I have read that fluke infestations often go undetected for years before the adults become visible.  I have such a hard time thinking any parasites could live so long in my kids considering all the things they get daily including coconut milk and oil, pumpkin seeds pancakes twice a week and all of the potent anti-microbials we give them three times a day.  They are all supposed to be anti-parasitic.  This just goes to show you how persistent these nasty critters are.  I have read that the camel milk has been known to address persistent parasite problems in people who had been fighting them unsuccessfully for years, so perhaps this is a flushing of some sort.

As soon as he passed them, he became particularly needy, whiny and demanding.  It was like someone turned on a switch!  He had to go down for his nap earlier than usual, because he just wasn't himself. I gave him a dose of the W-W by Pure Herbs and a small portion of a Goldenseal capsule with his afternoon anti-microbials so I am sure he's going to wake in a nasty mood, if we are killing something.  I will have to use this with Grayson as well and even took some myself. 

So as usual, onward....research, research, research.

Tuesday, May 3, 2011

Writer's block, but so much to report

I think when a lot is going on at once, I lose the insight it takes to write from my heart and soul.  I am so overwhelmed with the flurries around me that I just keep putting writing off until I have something specific to focus on.  So for now, I am going to attempt to push myself for fear of forgetting to report something going on in our biomedical world.  And so much of it is important.

The hot topics for today are mold repairs, a 504 plan for Grayson at school, IgG food panels for both boys and camel milk!

So I will start with the oldest news, the mold.  We are still eyeball deep in trying to figure out how bad the problem is.  The location where the leak occurred is the most obnoxious place to reach, it's directly behind where the deck is attached to the house.  You guessed it, the deck has had to be loosened (today in fact) to provide access to the wet wood.  Yesterday the contractor working on providing the mold company with access to the mold, pulled up the tiles for the sub floor that was wet, and he removed ALL of the siding on the backside of the house under the deck, plus some from above the deck to be sure that they follow protocol which is to remove anything within a foot of the damage.

You can see from the pictures how they are trying to access the side of the house where the deck connects to it!The picture to the left shows the mudroom door above the deck and our window in the basement, below.  To the right is the siding removed where the mold is, which is around and to the right of the window.  The worst of it all is located just to the right of the mudroom door (picture below) so today he actually removed more siding and deck towards the slider (this picture is from yesterday). He also loosened the lag bolts that connect the deck to the house!

 The way the water was traveling was starting at the bottom right of the mudroom door where the threshold and trim met.  It would pour down to the right and settled in the subfloor and under the threshold as well as overflowing down the basement wall.  So RIGHT where the deck meets the house, to the right of the door is the bulk of the problem.  Two panels of wood between studs in the basement have to be completely removed, so tomorrow, this view will look right clear into my basement!

We haven't even begun to address the rotted structural wood that was left in the front of the house by the previous mold remediation company!  The mold contractor thinks that is where the stachybotrys is coming from too.  We have a completely different contractor involved with that repair, since it involves the structure of the home.  I am still waiting to hear from him on an estimate.  He advised us that he will need to have a structural engineer sign off on the job.  Not sure, if that was a warning on how that changes the price....and we can't clean the air or get the post work air testing done until this is ALL done.  In the meantime, the boys have been sneezing, coughing and have runny noses.  Of course, adding insult to injury, it's also allergy season.  They've never reacted like this to allergy season though, so I am inclined to think they are reacting to the mold.  We do have huge hospital grade hepa filters in the house running at all times so that must alleviate some of this nastiness.

Gimme the 504
Something interesting came about from Grayson's food infractions on the bus....a 504 plan stems from the Americans with Disabilities Act.  A 504 plan spells out the modifications and accommodations that will be needed for students who have: physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems.  They make accommodations to offer them the opportunity to perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.

For Grayson, this specifically addresses the bus situation as well as handwriting.  And let me just say briefly, the bus situation is a God-send.  He's been driven to and from school by a mini van (like a personal chauffeur) with one other child, a friend's child actually!  And how does handwriting come into play?  Well, when Grayson was having the food infractions his handwriting went down the tubes, he was complaining of being too tired to write, he was uninterested and his writing was atrocious! His teacher and I spoke about this (keep in mind we didn't know about the food infractions at the time) and I mentioned how in the past he had he had been diagnosed as having delayed fine motor skills.  I wasn't sure this was our problem, but we both thought it was possible and decided on having an evaluation done, to be sure.  In the time between having the evaluation done and receiving the results, we discovered that he was eating gluten and casein among many other things he can't have, all resulting in personality changes as well as physical changes.  Once we got his diet cleaned back up, his writing soared!!  His mood improved, his interest skyrocketed and even his teacher said, "He can't be stopped!".  His evaluation identified a few areas to target, besides his fine motor skills which are actually pretty on target with other kids his age (yeay!), it didn't used to be!!  But his sensory issues came up, visual and auditory processing as well as muscular (tone) problems that can effect his ability to participate in school.  So the 504 plan allows him to have 30 minutes of occupational therapy once a week, the "private" bus, and a sensory "diet" at school which is anything he needs to be able to function without distraction, this could mean therapeutic brushing, weighted blankets, joint compression, which all help with prioprioception.

You might wonder why I didn't stop the process when we noticed the food infraction was our cause when even the teacher noticed how he has made a considerable change since resolving the issue....this is because I feel like OT can offer him some other solutions to things that might still need addressing while we go through the process of healing him from the inside out.  Having the additional coping mechanisms at his fingertips is a benefit many kids don't have and I want to take advantage of anything that can help him stay in the playing field.  He's been doing exceptionally well since the "incidents" and even the teacher has commented on his remarkable composure, maturity and interest lately.  This is a testament to the things we do....and why.  I love the opportunity for those around me to see what value there is in dietary changes.  It's a big problem in our Nation and it needs awareness.  This is the best way to create awareness, real life situations.  No one can deny the changes they have witnessed in this situation and every person involved has voiced that opinion.  During our meeting with the school and therapists, it was clear that they believe in the power of healing through foods.  They supported my efforts and plan to continue to do so.  I am so thankful for this school every single day!

Culprit foods
On that note, when he was clearly exposed to both gluten and dairy at minimum, we decided to take advantage of the timing and order an IgG food panel update to see, if he was/is still sensitive to these foods.  I have also wondered, if there were any other foods that could be causing some inconsistencies in his moods.  They have been bearable and nowhere near the way things were in the past, but it still appeared as though he lacked control of them and felt considerable remorse afterwards, as if he didn't even know himself anymore.  Gavin on the other hand, has never had an IgG panel done so we still needed the baseline on him.

Want the good or the bad news first?

The good news is that neither of them is sensitive to the many foods we use repeatedly in their diet (we still rotate them) and their gut permeability is good.  Gavin's intestinal barrier assessment was negative at well below half of what it would take to be considered mildly effected and Grayson was just 8 points over the threshold!!  So what we are doing IS most definitely working, yippee!!! 

The bad news is that BOTH boys are effected by egg whites and yolks, grrrrr!!  This is a hard one to avoid, but with Gavin moderately effected by them and Grayson in the high category for sensitivity, it's one food we have to remove indefinitely.  Ironically, they are both moderately effected by kidney beans, not even a food we give them.  For Gavin the only other foods that came up in the low range were kale and oranges.  Grayson had just about every food in the dairy category plus gluten and yogurt in the moderate range.  His low foods were baker's yeast, chicken (just barely over the threshold), soy, peanut, tofu, pineapple (this was high in his previous test), tuna (odd, he's never even had it), kale, pork, wheat, oranges and shrimp.  This is MUCH better than the 23 foods that came up in his last IgG panel!  I also wonder about the genetic factors involved, because both boys had almost identical reactions to foods that weren't even considered positive.  The test shows a bar for each food that was tested and even though a reaction may not be high enough to warrant fitting into the low category, it may still show a slight reaction.  Both boys reacted to a lot of the same things, for example cinnamon and green peas.  It is certainly interesting looking at these tests side by side.  Very telling of the big picture in our genes.

One thing that is clear for sure is that everything we are doing in the face of prevention with Gavin is working.  He only reacted to 4 foods and none were high!  This is considered in the very low range of normal.  It's wonderful news and had us floating on cloud nine!!

But isn't camel milk still milk?
Yes, camel milk is milk, BUT it's very different from cow's milk!  It has medicinal properties that have been healing people at record speeds, people with diabetes, allergies, cancer and autism.  Studies are confirming these findings at rapid rates.  There is still about 4-5% lactose in camel milk, but the lactose is even different and much easier to digest than cow's milk lactose.  The proteins of camel milk are the decisive components for preventing and curing food allergies because camel milk contain no beta-lactoglobulin and a different beta-casein – the two components in cow milk that are responsible for allergies. Camel milk contains a number of immunoglobulins that are compatible with human ones. Camel milk is also rich in vitamin C (three times as much as cow's), calcium and iron (TEN times as much as cow's milk!).  How do you like them apples? The healing properties are numerous, from the amino acid profile to the enzymes and minerals!

We found a farmer about an hour and fifteen minutes away and my husband just happened to have an opportunity to be down there yesterday so he went by and grabbed some frozen bottles for us and a friend.  I really expected the kids to fight it since we don't do milk at all, but they took to it immediately, even Gavin who has never enjoyed a dairy product in his life even when I tried!  They both sucked down the first cups I offered them of the fresh raw milk and promptly asked for more....and more.  We went through about 14 ounces in one sitting with both boys!  Then this morning, they both had cups of milk with breakfast and again at dinner, they will have more.  I'm not really even sure what I am looking for or what I expect out of this, but it seems to be doing a lot of good for those with similar health problems so I had to give it a try.  So onward with our newest adventure.

Read more about camel milk and autism here from a clinical Toxicologist!

This is a link to a study confirming that camel milk can heal liver disease!

And below are the kids with their first camel milk mustaches!!