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!

MOLD
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!!

Contemplating the future ahead

I typically have a very positive outlook on things, especially the health of my children.  I am always completely convinced that they will be well, even healthier than most NT people, when we are through with their detox program.

For the first time, I am scared about raising children who eat differently in this harsh world.  We have recently found out that Grayson has been eating gluten and casein, and who knows what else, while on the bus.  A friend is giving it to him almost daily and no efforts to remove tv privileges or play dates with friends is even making him hesitate in taking another bite....or half a sandwich, or a bagel with cream cheese....not even the tummy and head aches that result!

We have lengthy conversations about the reason gluten and casein, among other foods, aren't good for him.  He just isn't capable of self-control, so no conversation results in compliance.  I know that one factor is that he is five, and five year olds developmentally experiment with truth and lies anyway.  But the fact that a gluten infraction will stay with him for 6+ months in the form of gut and brain inflammation as well as immune disruption makes this a very serious topic for us.  We can't continue to trust a five year old to control himself, especially after having had an infraction with an opiate-like food.  It causes a craving beyond our comprehension.  Only a drug addict would get it.  He is addicted to the opiates, so when a well-meaning friend opens his lunch bag up to Grayson, he is going to take the offer, no matter how many warnings, threats or days grounded he gets.

Since this is the first time this is coming up with him, probably because it's really the first time he's had independence and freedom, we need to be sure we set the story straight and make an impact regarding how serious this is.  He needs to understand that we aren't bending, this isn't optional, it's his health, period.  So until we find out, if there are options available through the bus company or school, we will be driving him every day, grrrrr!  It means getting Gavin up and dressed in the morning to have breakfast with Grayson so we can run out the door and it means having to wake Gavin from his nap an hour early every day that I have to pick Grayson up.  It's definitely disruptive, but what can we do, it's his health.  I haven't budged on any particular part of his healing program in the past, nor will I start now.  I've even considered home schooling, which may become a hot topic, if the school or bus company doesn't do something to assist us in providing a safe environment for our child.  For now, we only have a few months of school left, so even if we had to drive him daily for the rest of this year, we will make do, but next year, Gavin will also be in school three days a week, and he will require driving to and from school.  It just won't be possible for us to handle both.

I also fear the idea that Grayson won't take responsibility for his health.  What if he really just doesn't care about what we are doing for him, if he truly doesn't grasp it, ever?  The idea that his gluten sensitivity causes health consequences for 6 months from each infraction means that everything I am doing in that 6 months feels like a waste of time!  I'm feeling very doomed right about now.

I think it's time for some Bach Sweet Chestnut and Cherry Plum flower essences:

Sweet Chestnut: For extreme anguish, the feeling that one has reached the limits of one's endurance. Teaches one to believe that change is possible, to trust oneself and the benevolence of the universe.

Cherry Plum is one of the five flowers in the rescue remedy formula. It addresses emotions of desperation and loss of control. This remedy helps one re-connect with a higher power when the tensions and pressures of life are overwhelming. It brings calm and emotional encouragement, allowing stresses and fears to be overcome. 

Infraction of the worst kind

I had been warned multiple times that this day would come.  As good as Grayson is about knowing which foods he can't have, he IS still just a 5 year old exposed to a lot of different people and foods when he leaves our four walls for school every day.  I was thrilled with our arrangement at his green charter school, because as of right now, everyone brings their own lunch, so I still have complete control of everything he eats while there.  I plan to retain complete control of his food for at least the next few years too, but little did I know where the loop holes could be....and Grayson promptly found them.

Let me go back a few days to some things I began noticing.  In one day, two of his teachers contacted me about "incidents" at school.  There was nothing horrible, but it was obvious that his focus was suffering for some reason.  I also noticed that he wasn't eating all of his lunch, something very rare for Grayson, even when he isn't fond of a food, he will always eat what we send for him.  He may just leave a small morsel behind.  Two days ago, his ENTIRE lunch came home untouched.  He said his stomach hurt.  Hmmm.  He has just gotten over an awful cold and before that, he was sick with the stomach bug, and before that...well, you get the picture, he's been sick a lot, so I immediately thought, "OH NO, not again!!"  That night, same thing, he didn't want to eat, because his stomach felt sick.  He did eventually eat though. The next morning, the eggs he normally loves made his stomach turn and he said he felt like vomiting.  I was sure he was getting sick yet again.  Then something in the universe pointed us in a completely different direction.  My husband had filled his backpack for school and forgot to include his lunch box.  In an attempt to catch the bus, he grabbed the lunch box and ran off after it.  Luckily, in many ways, he did catch it, because when he got onto the bus to give Grayson his lunch box, he was greeted by a nice little surprised Grayson.  He was in the process of eating his friend's lunch.....a BAGEL, probably with butter on it and who knows what else!  Meanwhile, his friend was gobbling down his Redenbacher popcorn, which I am sure he also shared ever so generously.

Suddenly the past muddy months have begun to look VERY clear!  He had been doing SO well for so long and then this sudden Jekyll and Hyde behavior, new sleep problems including bed wetting and nightmares, lack of focus at school, some hyperactivity randomly....but a clean stool test, all had us baffled.  I was reaching at straws and aiming at things in the dark.

Unfortunately for Grayson, we are now forced to tighten the noose.  He was given a lot of trust and freedom, but he has promptly lost that, and indefinitely.  He will now have to ride in the very first seat on the bus and is not allowed to eat anything at all.  In fact, the day we told the bus driver about our new plans, he told us Grayson accepted a bag of popcorn from a girl on the bus.  UGH!  He learned very fast where he could manipulate the situation.  He befriended a generous child, he found where he could sit on the bus to hide and eat....yes, this was calculated, but I do believe it may have started innocently enough with the boy offering him a bite of his snack/food and Grayson accepting then realizing no one noticed or said anything.  Rules?!  What rules?

This is a huge scare, because gluten can take many months (even from a trace encounter) to get out of the system.  We can't afford mistakes like this, his health has been severely deteriorating over the past weeks and months.  In the past, he would catch a cold or a stomach bug and be over it in a day, but more recently, he can't seem to fight anything.  Even now, he still has this awful deep cough (his brother has been over it for days) that was from a cold they caught two weekends ago!  Not like him at all.  But suddenly crystal clear!

I still want to pursue the additional testing and see, if viral issues may still be at play, weakening his immune system, but even more importantly, the updated food sensitivity panel could be very telling, now that he has been exposed to potential allergens.  When a child is avoiding a food, it doesn't show up as a sensitivity, because lack of exposure removes the antibody reaction.  Now that he has been exposed to gluten at minimum and possibly even dairy, if he is still sensitive to them, it should show up on this next test.  So we are going to take advantage of this little blunder and use it to educate ourselves. I have always believed in learning from mistakes and making the best of the situation, what better way to use this to our advantage?  Looks like the boys will be having their IgG food panel testing ASAP!  In fact, I think I will go call now, lol....

Where it gets interesting

When we have minor set-backs, it's hard to know, if we should be seeking the cause or, if we should just ride through the rough patch keeping things as they are. 

Triggers and Tantrums
Last night we decided to make a stir fry for the boys using Trader Joe's brown rice and lots of veggies.  They gobbled it up, loving every bite.  Then this morning, I gave them muffins that were made with small amounts of white rice.  They were perfectly behaved last night and again this morning, but not long after eating their muffins this morning, both boys began showing strong symptoms of regression.  Grayson's eyes grew pinker by the minute, he lost his never-fading smile and replaced it with a seriousness that only comes with regression and/or illness, he was spacey, and became highly intolerant of Gavin's existence, his belly bulged, and the oh so lovely defiance immediately reared it's ugly head, literally coming out of nowhere.  Gavin became highly defiant as well, which always results in screaming over everything, he also likes to purposely irk Grayson when he is like this, he experienced multiple fears in our attempt to take them to story time at Barnes and Noble and more belly bulges.  Both become insatiable, like they are bottomless pits and they react severely to being told no, tantrums, tears and more tears. 

Who, what, where and when
There are a few things that cause regressions such as this: yeast overgrowth, which could be related to them addition of rice in their diet the past few days, oxalate dumps cause the same sort of regression and with the oatmeal, brown rice and banana this morning, we have certainly increased their oxalates more than we should have.  In fact, we may even need to cut oatmeal out completely and I dread the idea of having to find another breakfast option for them, since we are already so limited with breakfast foods.  Food sensitivities are always in the back of my mind so the possibility of cross contamination with the Trader Joe's rice that we tried last night is something to consider.  And lastly, illness, and I PRAY we are not heading down that road again.  We've spent the past month and a half fighting illness after illness.  I have to admit, this morning I woke up with that strange tickle in my nose, that usually means a cold is brewing, boy do I hope I am wrong. 

What to do, what to do
So here we are yet again, the familiar air of regression.  Do we increase antimicrobials, do we give L-arginine to address the pains of oxalate dumping, do we increase anti-virals to attack a possible virus?  Unfortunately, there is no true way to know, so we are forced to pretty much ride it out at least until we see additional signs of what it could have been, in hindsight.  For instance, if they get sick, we know what it was.  We did increase their grapefruit seed extract and oil of oregano slightly by adding a mini dose in between their usual doses.  If they are having a pathogenic flare (rice feeds yeast) this increase will cause a temporary worsening of symptoms (from die off) and then they will come out of it suddenly.

This is the story of our lives, two steps forward, one back.