And the results are in....drumroll please?!

After just under one and a half months on the Body Biotics soil-based organism probiotics, see for yourself!

I know the new test is a little more difficult to read.  The orange bar in the center is the median range, but the actual range is much larger than that, and spans the entire distance to the black lines on either side of the orange bar.  If his results were considered high or low for a category, there would be a red H or L in the number column and the diamond would be outside of the normal range with a red diamond.

Those tests say more than anything I can write here!  HPHPA from 413 to 26?!?!  Yeast at normal levels?!?! Clostridia was a ***ch to fight, antibiotics never worked, natural antimicrobials kept things almost at bay, but we couldn't remove them without a significant backslide, and who wants their child on high doses of antimicrobials three times a day, indefinitely?   I can say, with certainty, that these probiotics are our saving grace.  They do everything they say they do!

We have Gavin's results too, but since it was our first OAT for him, we have nothing to compare to.  His 3-oxoglutaric was just slightly elevated, which means he had a little bit of a yeast overgrowth, but nothing else showed markers of dysbiosis and no bacteria issues, although his numbers were slightly higher than Grayson's.  I'm sure the results directly related to the dose of the probiotics, because Grayson was worked up to 6 capsules and Gavin was only at 3.  A friend's daughter who is the same age as Gavin, was also at 6 capsules and her numbers look almost exactly like Grayson's.  She had confirmed Clostridia with a level of 393 in December, plus a confirmed case of Candida Krusei.  Her results are clean for Candida Krusei and her HPHPA (clostridia) marker came down to 22!  Also in just under one and a half months!  We have also had two mainstream stool tests done on Gavin and both the bacteria and yeast testing came back completely clean, they were done more recently.  I don't normally put a lot of weight in these tests, but our friend's yeast testing resulted in two forms of yeast at one point, so I know they can pick things up, if they are there.  Regardless, the OAT and the stool testing are my confirmation that things are under control, with NO ANTIMICROBIALS OR ANTIBIOTICS!  What a breath of fresh air to say that!

If you want to know more about these probiotics, click here.

With the good news comes the bad...isn't that always the way?  When we ran our battery of tests on the boys, we have finally confirmed PANDAS (among other things, including a compound heterozygous gene mutation) for Grayson.  I have always suspected it, but never had the titers to prove it, well now I do.  He was in a flare and sure enough both titers came out over 400. My motto is and has always been....one day at a time.  My research continues!

Now we are focusing on the PANDAS, and hoping that the complimentary combination of the probiotics and homeoapthy will do the trick.  Stay tuned!

Alinia

We've all been on Alinia, an anti-parasitic prescription medicine, for a little over a week and a half.  I'm honestly surprised that more DAN! doctors aren't using this in place of meds like Flagyl, which wreak havoc on the body.  They could kill two birds with one stone, because in addition to fighting parasites, it also kills anaerobic bacteria like e.coli and clostridia!

The pros we have seen, by comparison to using Flagyl:

• no crazy die-off symptoms
• minimal bowel changes (although they do exist, they are not nearly as bad or as frequent as with the Flagyl, but Gavin is having a lot of black specs in his stool)
• only positive changes like more calmness, focused play, cooperative play with both boys, patience, increased compliance, happiness, no screaming for communication, better communication in general, bellies are lower, I could go on, but I think you get the point.
• and the best news, it doesn't kill off good bacteria (only anaerobic bacteria), so it can be dosed with probiotics and won't compromise the already damaged intestinal landscape!

The only con is that this product cannot be compounded, which means you are either stuck with a suspension that has red dye and sorbitol or large tablets with a yellow dye coating, sorbitol and need to be split.  We chose the tablets, because both boys can swallow pills and red dye is the absolute worst.  We peel the yellow coating off, split the tablets into quarters and put the pieces in some pear sauce since they no longer have their easy-to-swallow coating.  Oh, there is one other con, they need to be dosed every 12 hours which means we are waking them up at about 8:45pm (they go to bed pretty early) every night for 32 days.  Then combine this with round the clock dosing on weekends for chelation and boy it gets fun around here!

We are really hoping this takes care of the parasite for Gavin, he's a different child right now, we feel like we've finally seen the real Gavin come out of his shell.  Even Grayson has been effected by it quite a bit, so we are wondering, if he had the parasite undetected or if it was still clostridia at play in low levels.  He had started to get a bit grumpy, argumentative and negative for a little bit, now we are seeing our happy-go-lucky boy again.  We thought it was age-related stuff, now I am convinced more than ever that the difficult behaviors we see in kids is more than age-related.  Every time I've ever thought we could be over-analyzing age-related behaviors, I am proven yet again, that the condition of the gut is in fact related.

Oh the joys. Parasites and viruses.

I can't remember a time when we haven't had multiple experiences overlapping each other, graying the fine line that once existed between symptoms and results, cause and effect.  I hear myself relentlessly repeating, "it could have been, or it might be..., but I just don't know".

As you may know from reading my blog, Gavin has a parasite called Dientamoeba Fragilis, once labeled as a protozoa/amoeba, but more recently relabeled as a flagellate.  Lyme Disease is also a flagellate and as I am reading about the D. Fragilis, I am learning about the similarities they share, such as the many changing forms this parasite has....making it hard for any conclusive fact to be established about it's life cycle and stages.  One thing that has been determined is that it doesn't respond the same in a body as it does in a test tube or slide.  It isn't even known, if this parasite goes through a cyst change during it's unknown life cycle.  We don't know, if it hatches or reproduces with the full moon or new moon, or BOTH.  There is overwhelming evidence that these creatures cannot survive outside of the body, suggesting fluid transmittance or the use of another "host" to transmit them successfully from person to person.  It is most likely that they are hitching a ride on other parasites like B. Hominis or pinworm, etc.

I have a theory about how Gavin could have gotten infected with this one-celled parasite and perhaps has had it since birth (since all of his symptoms have been there since then).  When I was about 19 years old, I experienced a case of pinworm infestation which was ironically short-lived and didn't require treatment.  If D. Fragilis hitched a ride way back then, perhaps the pinworm situation resolved itself, but I could have been carrying around the D. Fragilis, asymptotically, which is not very uncommon.  Along comes this helpless baby boy who contracted my parasite in utero and never had a chance against infection from the very first breath he took.  He was immediately sensitive to foods like dairy and soy, he bloated early on, had torticolis (not sure if it's even related, but part of the big picture of his health), bowel movements varied from constipated to loose from the very first bite of "solid" foods, he had a seizure by the time he was a year old, and mood swings and control freak are understatements!  So here we are three years later, with possibly three years of damage from this GI-disturbing parasite.

What does all of this mean for families like ours who are trying tirelessly to rid themselves and/or their children of this monster?  It means experimenting with many treatment protocols.  We did multiple natural parasite cleanses from Humaworm and Artemesia to W-W from Pure Herbs and even higher doses of black walnut hull.  Although he always experienced some level of die-off, the symptoms never seemed to subside fully, he continued to have behaviors that waxed and waned with the moon cycles, very typical of parasite infestation.

Alinia was recommended by our DAN! doctor.  He gave us a script for just Gavin, 5 days worth.  So I did more research before even considering giving this RX to him.  I wanted to know more and had quite a bit of information already under my belt confirming that Alinia should only be used, if the doses are going to be high enough and used for long enough to rid him of this pesky intruder for good.  Just giving 5 days of meds could create a super-bug rather than killing it off, especially considering it travels with the ever-resistant B. Hominis which has a very long cyst cycle.  When a parasite is in it's cyst form, it is impossible to kill, so that means either knowing it's life cycle (which we don't) or treating for an entire month, plus a few days, to ensure hitting the exposed, non-cyst phase.

So as a last resort, we decided to attempt the Alinia, BUT only if we could have the longer dosing schedule and for the entire family since it is highly probable that this originated with one of us, and even if it didn't, we could pass it between us again post-treatment, all dependent on it's method of transition, but I don't like to take chances with our children and their health.  Our doctor was open to the treatment protocol I had found to be successful with multiple other families and ironically, our insurance actually covered it!!  Over $1000 per person worth of prescriptions, yippeeee!!

So here we are, on our third day of taking the Alinia (two days before the full moon), all of us.  I expected to be in a world of hurt, but surprisingly, it's been pleasant....well, hahahahaha, except for those around me, since I am very clearly effected by some form of die off, if you know what I mean (blushing).  Not very ladylike to say the least, teehehehe.  Gavin has had some gas as well, bowel movements were perfect for the first two days, but today we had what we have come to call Flagyl-poop.  Grayson was put on Flagyl years ago, for high levels of Clostridia (bad bacteria) and his BMs were hideous, they floated like chunks of cotton candy, attempting to stick together in what looks like it might have resembled a BM before exiting the body.  It is undeniably a die-off symptom.  Another interesting fact is that the Alinia also kills anaerobic bacteria like e.coli and clostridia, both of which we know Grayson has had, via stool samples.  This prescription has many modes of attacking our boy's ailments.  Lets just pray the results are permanent!

To add insult toinjury, two days into taking Alinia, poor Grayson contracted Coxsackie (Hand, Foot and Mouth Disease).  He developed a sudden high fever, lethargy, not hungry, sores in the back of his throat and he slept much of yesterday after  I loaded him up with 40,000IU of vit D3, OLE (which I confirmed wouldn't interact with the Alinia), Virastop and Lauracidin.  He woke without the fever, but was still very lethargic until bedtime, which he did not fight one bit.  He was ready.  Today, his mood is great, his eyes look bright, he is energetically playing with Gavin and he wants to eat, but his throat hurts too much to swallow anything solid. 

Amazingling (knock on wood), Gavin hasn't shown ANY signs of this illness....yet.  The contageous period can last weeks as the virus sheds, so I am praying Gavin's immune system is fighting it off successfully.  We are helping him with the natural anti-virals too.  In fact, Gavin is like a new child yesterday and today!  His mood swings are GONE, he is cooperative, compliant, happy and bouncy, his speech and ideas are more complex, he is playing nicely with Grayson (who is playing nicely back, HEAVEN for me), his belly was even flat for the first two days on the Alinia.  Today he has a little pouch after the strange BM, but still not as protruded as usual.  He's amazing, and I am relieved.  There is a glimmer of hope that perhaps this is Gavin's main health issue, and that perhaps we will have it resolved with treatment.

We just ordered follow-up hair tests with Doctor's Data, Inc. to see the progress we have made after a year of chelation with Gavin and two with Grayson.  The results should be in between tomorrow and Tuesday...I am so anxious!!  Maybe, just maybe, Gavin will still not meet Andy Cutler's counting rules and maybe, just maybe, this parasite will resolve the issues we were tying to mercury toxicity, and maybe, just maybe not having him vaccinated was the smartest thing we ever did!!  We'll see, one can hope, right?  Without hope, our days look dark.  I prefer to see the light at the end of the tunnel, even if my perception may be slightly off occasionally.  It can make the days in between seem less stressful.

Metametrix DNA microbiology test results

I am experiencing a lot of emotions about the results of the boys' stool tests.  One one hand, Grayson's results look great!  The test is perfect, he is colonizing the good bacteria (not as high as he should, but better than the last test which had none of some good bacteria), has no significant bad bacteria or yeast and no parasites.  As wonderful as it sounds, yes we are clearing things up, chelation is working, and the antimicrobials are working, there is still something going on.

Yeast, bacteria or virus?
For those of you who have been following our story, you know that we had huge issues with Clostridia and yeast in the past, along with symptoms of regression recently.  So if they aren't yeast and Clostridia, what are they, right?  We have always thought Grayson was a "viral kid", meaning that he would have high levels of live viruses residing in his gut.  This was evident by his lack of illnesses when he was two and now his frequent viruses, and it was confirmed when I added OLE (olive leaf extract) to his daily routine.  Ten days into treatment, he broke out in a viral rash that looked like the chicken pox, but less severe.  It was all over his truck and neck for days.  This is a common event for those who are treating for latent viruses.  So now all this stool test tells me is that I was right, we need to focus on attacking the viruses, although, we don't know which ones we are aiming for.  I can guess that being he was given four live virus vaccines in one visit, before all of this started, we should probably consider the measles, mumps, rubella and chickenpox, at minimum.  In fact, when we did the vaccine treatment with the BioVeda BAX3000, he had a significant reaction that started right in the office after the treatment.  He got really hot, flush and itchy and immediately broke out in yet another rash!  Since getting the results of the stool test, I added Monolaurin back into his routine and just two teeny tiny pellets (they are usually given as a scoop of pellets) send him reeling in emotion, impatience, itching, and head swatting comes back along with some minor sensory symptoms.  Viral die off can cause a flare in yeast, so it wouldn't be uncommon to see a combination of viral and yeast symptoms.  I can tell that the addition of the Monolaurin is doing something to him, because he wakes in the morning in a perfect mood, and then after his dose, the symptoms begin to rise.  Using some PectaSol C calms down the itching at least.

The monster within
Ok, now for the interesting one.  Gavin's test found a parasite called Dientamoeba Fragilis, also known as DF.  (sigh) It's a flagellate protozoan parasite.  Sounds nice, doesn't it?  I hate to say it, because I probably should have done this test with Gavin sooner, but I had a feeling part of his problems were parasitic.  He never gained weight well (always under the growth chart), he eats more than we do some days, he's hungry constantly, always had the red anal ring, severe bloating (especially lately), food sensitivities, eczema, recently he started saying he was having pain in his upper intestinal area and his BMs have always alternated between constipation and loose.  I always said his issues were only GI related and ironically, this parasite resides in the large intestines reeking havoc on the GI system. Now take a look at how similar the list of symptoms from emedicine are compared to what we were experiencing:

In chronic infection, duration of symptoms is greater than 1-2 months. Abdominal pain is the more common complaint. In children, pain varies with regards to location, duration, and character.

Other GI complaints include the following:

• Anorexia
• Weight loss
• Nausea
• Vomiting
• Bloating
• Flatulence
• Alternating constipation and diarrhea

Nonintestinal complaints include the following:

• Headache
• Fever
• Malaise
• Fatigue
• Irritability
• Weakness
• Pruritus
• Urticaria

Other sites go on to say that chronic infections cause food allergies/sensitivities, especially to wheat and milk!  Another symptom noticed by those with confirmed cases is green BMs with undigested food.  Gavin requires the use of enzymes in order to prevent the undigested food from showing up.  He has always had a random green stool here and there  and now that I have started treatment for this parasite, just this morning his stool was green!  We did the family parasite cleanse only 4 months ago, but we avoided wormwood (artmesia) so I decided to add that in this time.  He is most definitely reacting to this treatment with strong emotional frustrations, his tags in his clothes are bothering him suddenly, severe bloating and he is very needy.  He's speaking less than previously too, or perhaps it's just more to the point with his unfavorable mood.  I hope we are on the right track to dealing with this parasite, because I have read such conflicting information about effective treatment protocols!  It appears to be a very hard parasite to eradicate.  I'm not surprised though, I heard the same thing about the Clostridia in Grayson.  We are combining the anti-parasite treatment with the biofilm protocol (without EDTA) to ensure that the anti-parasitics reach the bugs.  I've also read great things about a product called W-W by Pure Herbs.  I may do what we are doing now for a little over a month (today happens to be four days before the next full moon, so it was perfect timing to start treating!) and then I will repeat a treatment every month with the W-W which is recommended by using it four days before the full moon until four days after the full moon, for about 9 months.  Contrary to this treatment though, I have also read that a prescription called Alinia was successful at eradicating it in another mother/child that were infected with it.  But this mother said it was absolutely imperative to use it in high doses for a long time (35+ days).  So I think I will try the natural route first, retest and then consider the Alinia, if this doesn't work.  I am sure I will see a decrease in symptoms, if this parasite is killed off.

On a good note, already since using the biofilm protocol with the Artmesia and black walnut hull all together for the first time today, his belly is less bloated and his mood is getting better.  We also had a green stool this morning, wondering if that signifies die-off....there is much to research!

Doctor doctor on the wall

I swear that is where I feel like our doctors are these days, posted like a trophy on the wall. "Look, I am a degree"...but where is the continuing education, where is the common sense, where is the research? I know, I know, I have been reminded by even my own pediatrician that they do NOT prevent, they are taught to treat illnesses, to be reactive, not proactive and they use medicine, period. We are so torn between going to our standard pediatrician who is covered by our insurance, but doesn't know a thing about what we are going through or going to our DAN! doctor who is a holistic doctor and handles many cases of children on the spectrum through biomedicine, BUT insurance will not approve any of his tests or treatments, they are considered "experimental", hence making the appointment ineligible for payment too. Until a parent is faced with these frustrations, you could never ever know how frustating it is to know that your child will only get better, if you are financially capable of fronting the cost for the doctors, many tests and the long-term treatments necessary to correct his or her health problems. How do you think it would feel to know that the only thing standing between you and your child's wellness or recovery is money, and a lot of it? Frustrating to say the least, unfair at best. On top of it, the parents need to highly educate themselves on the treatments, because there are SO many biomedical protocols out there. What works for one might not work for another, so in addition to spending a fortune, imagine spending a fortune on things that don't work so you end up with bottles upon bottles of full supplements that didn't work, just to move onto the next $40 bottle of something, that maybe doesn't work either! It's a never-ending battle and we feel SO alone since we often can't just pick up our phone and call a ped for advice. They wouldn't even run a viral titer so I can see if he has developed antibodies to the vaccinations he DID get.

Since we are caught in this position, I had some standard blood tests run on Grayson just to see where his health status is, at least it's covered by insurance. He doesn't have anemia, his hemaglobin is good, thyroid good, D levels are great, but his CBC showed elevated platelet counts. The range is 150-400 and his count is 532. I have done some researching and the scary things like leukemia aren't even an option, I won't even give that a thought, but some things did pop out at me on a few web sites. I saw mention of irritable bowel disease and clostridia as possible links. Now THIS would make sense. So while I am still uneasy at the results, I am somewhat relieved to see that the very thing we are battling could be at play here, again, supporting every route we have taken, confirming to me and anyone else who wonders about holistic quakery, that this autoimmune issue is, in fact, real! I am not trying to find something wrong with my child, I don't WANT him to be like this, he just is. The recurrent medical findings confirm that my child is not a case of hypochondria, he is ill, very ill on the inside and I intend to fix it, even if I have to do it alone! If your child had a heart disease, you would do everything, and more, in your power to help him, this is no different.

Long time no chat

Wow, it's been months since I have updated the blog. School started and things got crazy! As the old saying goes, "No news is good news" and this is true in our case! We had such great changes with the Flagyl in July and then in a matter of months, we were seeing an increase in the bacteria-behaviors like anger, aggression, defiance and the resurgance of sensory issues occasionally. So back on the Flagyl we went...I wanted it addressed before school started and what a great idea that was. Last year when he started school, he was a mess, an absolute mess with hitting, very vocal meltdowns, temper tantrums and acting out. This year he is the perfect dream student! He is older too, of course, and he loves helping the younger students which I hear he does very patiently...that's my boy! We have been off the Flagyl for about a month and so far so good. We try to keep the bacteria at bay naturally with daily Olive Leaf Extract, Oil of Oregano, Biotin, we rotate in Capruylic Acid four days a week and I recently bought peppermint gel caps, but I haven't really gotten them into the action yet. I am still researching that front. Then at bedtime he gets four doses of probiotics - two dairy free Culturelle and two New Beginnings Probiotic Support which contains Sacc. B.

We are still chelating and just finished with round 14. We had a few blunder rounds....forgetting to wake up for a middle of the night dose, oops, so we had a few do-overs, ha ha ha. It's going really well though. He handles chelation great, comes off the round fairly well, with just a tad of the high sensory stuff like shirts bothering him and pajamas not fitting right, the covers on the bed are annoying and won't lay right, but that is fleeting thankfully. If you read my earlier posts you see how much of an improvement this is! I have to say that since starting chelation we have seen AMAZING and permanent changes in him and of course keeping the bacteria down makes Grayson the perfect child so that helps. He was never able to peddle a bike, he hated even trying, it was just exhausting for him. Suddenly one day he hopped on and peddled around in circles, whizzing around me like a bee. That just came out of left field. He has no problem walking beside us when we are out now, he used to cry that he had to be in the shopping cart or stroller and that he was just too tired to walk. He still prefers the stroller some days, but he doesn't fight us if we say no. I believe his mitochondrial function is improving based on these changes. A silly change I just noticed yesterday...He is normally afraid of bugs, won't go near them, but was always intrigued by them. His little brother who is 16 months old has no problem grabbing a hold of the elder box bugs as they sun themselves on our deck, but Grayson would always partake in the action from a distance. Last night the baby noticed one in the house and next thing I know, Grayson is holding the bug in my face asking me if I want it. Talk about a shock! I was SO not prepared for that, ha ha ha. He had the bug crawling all over his arms and body, giggling from the tickles. I have never been more excited to see my boy acting like a BOY! He's always had these fears of things that most kids relish in, getting his hands dirty, birds, frogs and bugs. I am all for it, get dirty, get wet....you can change and wash clothing, life is too short to not enjoy being a child. And I am enjoying watching it!