Obsession or hyper-focus? Mother Warrior Mode!

If you are reading this and you don't have a child on the spectrum or one who requires biomedicine, you probably wonder what all the hype is about. If you are reading this and you DO have a child in one of these categories, you know where I am going with this, don't you?

I hear this often..."But it's just one, can one really hurt him?" and "Does he really need all of those pills?" The perception of mothers like us is one of obsession, we research and we fill our kids with gobs of supplements daily, we restrict our kids from chlorine in swimming pools, we avoid sugar, artificial colors, preservatives, wheat and MILK,....why? Is this really necessary? Don't kids need milk? No they don't, and yes this IS necessary. The only way to recovery is complete...well, you might like to call it obsession, but I prefer hyper-focus.

Mainstream doctors don't get it, they don't get us, they don't get our kids. And why is that? It's simply, because they haven't studied biomedicine. Would you go to a heart surgeon for GI problems? I think not!! My son has quirks, yes, and so do I, BUT he also has an overgrowth of yeast and bacteria, sensitivities to a plethora of foods, high oxalates, malabsorption, vitamin deficiencies, sensory issues, the list is lengthy and I could go on explaining the symptoms I used to see on a daily basis (in fact, just read the beginning of my blog for that), but I would rather tell you what this hyper-focused mommy-warrior mode does for us. Plain and simple, it turns a very unhealthy child into a healthy one with a bright future. What mother wouldn't do this for her child, if she knew it was possible? I don't see it as anything other than necessary!

The medical community forces us to this, we need to help our kids by researching, talking to other moms, trial and error, meds and supplements. The other thing that drives us is that we are told that there is a window of opportunity when it comes to recovery and we are right in that window with Grayson now. The best and most permanent results are seen when treatment is started between the ages of 1 and 5. Beyond these years and we risk a slower recovery and perhaps a less permanent recovery. This is called "Managed Recovery" in our world. Many of our kids will actually require this and it means that they are healthy, with their previous diagnosis removed (IE-autism, ADHD, PDD-NOS, etc) however, it's the diet, supplements, chelation that are possibly continuously required to maintain this level of health. It has been described as an autoimmune disease and it's believed that it will be renamed in the near future. We wills top calling these symptoms autism and start seeing them for what they are...autoimmune dysfunction.

People who meet my son now think he is just perfect, and truly, I hear that word a lot with him..."perfect". No one is perfect, but to me as a parent, I agree, he IS perfect, however, he is far from healthy and the reason he appears "perfect" to others is because of everything I do. My job as his mother is to make sure he is given the best opportunity at a healthy (and fun) life.

So I repeat, is this an obsession? Perhaps. Is it necessary? Absolutely!

Chelation - round 8 - added supplements to capsules

I am so glad we stuck with the ALA. When we first added it to the DMSA, I was terrified by the results, the incredible increase in stimming and negative behaviors, but we stuck it out, used it again in smaller quantities for two more rounds and now he is doing fine on it. The last round was a little rocky, emotional, but not nearly as bad as the first ALA round. It could be that we have also been using prescription meds for the yeast and bacteria which chelation will ultimately flare up. So other than being utterly exhausted with the round the clock waking, this round is going so smoothly! He is on his last day of chelation today and we are seeing some emotional outbursts, but up to this point, he has been wonderful! NO stimming at all, no sensory seeking, and even when he gets emotional, he is recovering himself pretty well! I might be able to credit his level behaviors to the fact that I added his calming supplements into each dose of chelators. When I split his capsules, I also added an additional 250mg of vit C, vit B, 100mg of Milk Thistle, 180mg magnesium and a 1/4 of a capsule of ACE daily. The C and B help with the stress ont he body, Milk Thistle supports his liver, the magnesium is calming and necessary for the absorption of many other nutrients and the ACE addresses the adrenals which are often fatigued during chelation. So needless to say, I will continue this method of dosing going forward.

Seeing the WOWs, but what did it?

We are seeing AMAZING changes and we are even starting to see some consistency, things were all over the place before. I just can't put my finger on which was the major "wow-factor" or if it was a combination of things. Here is what we have done recently, and in this order:

1-Started Flagyl and Diflucan (based on yeast and bacteria markers in Organic Acid Test), also started SeriPhos for anxiety.

2-Added artichoke extract to the milk thistle we were already using to add more liver support (trying to address his whole body itchiness with either anxiety and/or liver stress as the cause)

3-Added OLE daily (200mg)

4-Started Nystatin once a day

5-A gland that has been raised on the side of his neck since he was a year old (and I mean VISIBLY raised) has gone down significantly, some days it's not even palpable! This is major.

6-Increased buffered Vit C to about 1000-1200mg a day to help with irritability (we had reduced it for oxalate issues and found him to become increasingly more irritable without the high levels of C)

7-Noticed his tongue was spotted and almost coated looking and pimples on rear (probably related to the die off from gut bug meds)

8-Stopped giving calcium (suspecting hypocalcemia), as a rial, just giving 360mg buffered mag oxide instead

9-Increased Nettle tea (about 1/2 cup a day) for calcium and possible allergies (we had used this before in smaller quantities)

10-Stopped first ten day course of Flagyl and Diflucan

11-Added 1/4cap of ACE (Adrenal Cortex Extract) for possible adrenal fatigue (we started seeing major changes about here, literally immediately)

12-Increased Milk Thistle by at least 200mg per day for itching, seems to have helped, but itching is still there throughout the day (still can't quite figure this out, but may be related to toxic release)

13-BMs have FINALLY gone from a very loose, strange consistency and foul smelling to NORMAL and not smelly, still undigested materials in them though (nuts, buckwheat groats and sunflower seeds seem to remain undigested)

14-OMG, as I was writing this, I noticed a crazy rash all over his upper torso! It looks like chicken pox! They are evenly spaced little pimples, he said they don't itch. They go from his collarbone and back of the neck to his mid-torso, they are not on his arms, legs or face....We just started the OLE 11 days ago (it is a top rated antiviral) and strangely, that coincides with when we saw the gland go down! The gland originally popped up right after his 12 month vaccinations, it came with what looked like a mild case of the chicken pox then too! But it also coincides with when we started the Nystatin, so it could also be from die-off of gut bugs. We haven't given him a bath, put any lotions or anything new on him either.

The point we are at now....verbal stims are almost non-existant except when he seems to need some OoO (3 drops), Biotin (20mg) and 1 No Fenol for yeast, we give this 2-3 times a day, we haven't had any meltdowns in DAYS, the anger is gone, the anxiety is non-existant, he is silly and talkative, almost hyper, but more appropriate kid stuff and he is listening well when we ask him to calm down, defiance has subsided. He must be feeling good. He goes to bed around 8pm and wakes no earlier than 8 or 8:30am, even 9-9:30am some days (and this is a child who used to wake a 5:45 before chelation!!). He is still itching, but now I can't tell if it's habit, a stim, yeast, related to allergies (he has no other signs of environmental allergies), or just plain die-off side effects. Between cleaning out the liver, killing off the gut bugs and chelating metals, he has a lot that could be coming from his pores. This is the first time in almost a year that we have had consistent days like this. We will be going onto another course of Flagyl and Diflucan. Once we go off the Flagyl, we will retest with another OAT (Organic Acid Test) which our DAN! might have actually gotten covered by insurance!!! WOO HOOOOOO!! (happy dance)

These have been the biggest WOWS we have had. In fact, yesterday we had a play date with two boys we haven't seen in ages, he was FABULOUS the whole time, playing nicely, sharing (wow), laughing. The play date we had before this last one was one disaster after another, he hit the boy, he cried, he lost his temper, screamed and had no patience the whole time, grabbed toys left and right, but this was just a few days into his meds so I am sure we were dealing with die-off.

Way of life and death...of BUGS!

So today I was one of the lucky homeowners to spot an ant in my house, IN IT, where they DON'T BELONG!! Eeeeeew!! First it was one, then another....and another, this one was bold enough to steal a morsel of food from my kitchen, which actually isn't that hard to accomplish with two young children. I managed to find a handful of them coming from the front half of the house, which makes sense, because that is the part of the house that is at ground level, the back is at the second story. As you know, having a chemical sensitive child means I couldn't just run and grab some ant spray to get the suckers. I stood there thinking, "Now what?" This isn't in the biomedical manual!! Ok, so thinking along the terms of natural the first natural volitile thing I could come up with was VINEGAR!! I ran for the bottle, poured some into a squeeze bottle and went around soaking every crack and crevise on that side of the house, all the while big-toe-squashing the little buggers I found along the way. They don't die easily either so I finally got smart enough to soak a paper towel with the vinegar and use that. I sprayed outside along the house too. At least vinegar is a natural cleaner too, so I killed two bugs with one stone...hardy har har.

In a matter of 30 min, I managed to douse my house in vinegar, but I am proud to say there wasn't a pesky bug in sight for most of the day and it was squeaky clean to boot. Every now and then I would find a straggler roaming the middle of the room. Apparantly, what the vinegar does (which I didn't know before I soaked my house with it) is it masks their trail. They leave a trail that allows them to get back to their home, so when you get rid of that, they literally get confused! So I went on the hunt for more natural bug remedies and found these little tid bits:

Ants
* Vinegar can be used to destroy ant trails.
Without clear trails, the ants will get confused and may stay outside for a while. You can use it diluted with water or straight. And, of course, vinegar is also a great household homemade cleaner, so not only do you get rid of the ants, you get some cleaning done too.

* Cinnamon and black pepper are both increasingly being used in garden and
indoor insect control. You can try dusting the outdoor nests with either of these spices.
Cinnamon is more beneficial as a natural barrier to stop them from coming in -- it's most effective when you find the source of where the ants are coming in.

* Add borax to sugar.
Many people believe that you should use a 50-50 concentration, however, ultimately the goal is to have the ants bring borax back to their nests. Starting with a lower concentration such as 5% or 10% borax to sugar and gradually increasing it to 40%-50% will allow the ants to have more time to bring more back. The mixture should be placed where you see the ants or on the ant trails.

* Baby powder or talcum powder is not appreciated by these bugs. The theory is if you dust the ants and the trail, they stop coming.

* Liquid soap diluted with water is an easy way to wipe out your pests while
not harming your people. When used outside as a spray, you'll want to dilute the soap (such as Dr. Bronner's Organic Castile Soap) -- roughly 1 or 2 tablespoons per quart of water to kill the pests but not your plants.

* Bay leaves,
cloves, and cayenne pepper have long been used for ant control. Try putting one of these at their entry point, and in drawers, shelves, etc., where the ants are going, to prevent them from coming in.

* Peppermint can be sprayed around your home's perimeter and at ant entry
points. This will deter them from coming inside. More resources: SimpleGiftsFarm.com, Sugar Ant Hotel from Care2.

Fruit flies
* Clean up any ripe fruit droppings and take out the trash (or if you are a green superstar, your compost!) nightly for a few days -- fruit flies lay their eggs in overripe fruit.

* Apple cider vinegar is a great natural way to get rid of fruit flies. Pour some into a glass, and place a paper funnel over the container. Fruit flies love the smell and will fly into the glass, but will not find their way back out the funnel (for 4 of 5 fruit flies...).

* Leave a glass of cheap wine (apparently, fruit flies particularly like chardonnay) out. Mix a bit of detergent in it. The flies will sip on it and die shortly thereafter.

* Make your own fly paper by boiling water, sugar, and corn syrup together. Spread the mixture on brown paper grocery bags and wait for the flies to stick.

* Suck up flies through the back of an old hair dryer. The flies will go in the hot back end of the dryer and fry.

* Basil deters fruit flies. Mix some basil oil with water and spray your kitchen.

Wasps
* Make a trap from an old soda bottle to catch wasps. Using a 2-liter soda bottle, cut off the top 1/3 of the way down. Flip the top so that the bottle neck is facing down into the rest of the bottle. Tape or staple the bottle neck to the outside of the bottom piece so that it fits tight. Fill the bottle part way with soda or fruit juice. You could even line the top of the bottle with jam to help attract the wasps. Wasps will enter the bottle but will not be
able to get out. Clean and refill the trap daily or as needed.

* Remove the nest. If you find a hanging nest, wait until the wasps are less active (namely, at night). Carefully approach the nest. Put a cloth or plastic trash bag entirely over the next and quickly tie it off at the top. Remove the nest from wherever it is hanging, then submerge the bag under water and weigh it down with a rock.
More resources: EarthEasy, Get Rid of Things.

Slugs
Slugs can be a huge pest in any garden. They're fond of eating plants, shrubs, and mosses, much to any gardener's chagrin.

* Fill small bowls with stale beer and place the bowls strategically in areas
of the garden where the slugs are most active. Slugs apparently like stale beer, so they climb in to drink and they meet their maker (they drown in the liquid).

* Other eco-friendly slug-fighting tactics include liquids that work similarly such as grape juice or a tea made from yeast, honey, and water. More resources: Mother Earth's Garden

And I found this post on a message board thread, makes you really want to think twice about using Equal (HATE that stuff):

"Aspartame is great for killing small ants if they are in your house... We dumped
a few packets of Equal in the corner of our kitchen and the next morning had a
little sad pile of dead ants. Makes you think twice about dumping the stuff in
your coffee, for sure....

It's funny I read that aspartame used as an ant killer was an "urban myth" or
something before we tried it, but in my own little experiment it sure worked.
Makes you wonder who is really controlling what we read."

My mother has always said, "Necessity is the mother of invention" - it sure is!

More questions, as usual

Another new layer unfolds. It always appears that with our gains, comes the confusion of additional changes. We have been seeing major gains in Grayson lately, he is just flourishing in between rounds of chelation, but with each round we unveil yet another new possible problem. It seems like we change his supplements monthly....talk about heavy on the wallet? And with each new issue comes the recommendation of more testing...also out of pocket expenses for us. We just can't keep going at this pace or we will be out of a house in no time! We are trying to pace ourselves, but this is something that is very hard to do. A parent wants to do EVERYTHING possible to help their child, NOW, not when the paycheck allows it. It is painful to know that we need to be doing more for him, but we are forced to decide on what is most important at the time...ya know, like eat dinner or try a new supplement that MIGHT work...pay the gas bill or run another test to see how his liver is handling the chelation. How does one prioritize these things when they don't have a decent flow of income, is beyond me?? I am grateful for our ability to at least do what we can.

So the antifunal and antibacterial meds worked wonders, wow, what a difference!! We see such marvelous gains in him, he is calmer more regularly, he is waking in a GREAT mood, sleeping well and until after 8am every day (heaven!) sometimes I even have to wake him after 9:15am! The down side to the meds is that they put additional strain on the liver, which mercury and chelation also do. This is such a balancing game. We have increased the appropriate vitamins: vitamin C, B and E three times a day, plus we have added an additional liver support, artichoke extract. We also figured out that he probably has adrenal fatigue, which would cause the severe mood swings so we added Adrenal Cortex Extract, perhaps this is the cause for our recent wows. He has been pretty amazing for the past three days or so...hmmm, yes, it might be the ACE after all! BUT....isn't this always the way, with all these great changes we have seen a significant increase in itching. Crazy, frustrating, nonstop all over body itching!! He uses the back of his hands rather than fingertips, he rubs under his chin, across his forehead, along the sides of his head and ears, up his forearms rubbing them along the sides of his body, then he truly itches in the classic sense, his shins and ankles, both sides at the same time. This goes on all the time lately and it has been irking me trying to figure out the cause. We have spoken with Dr. Woeller and Dr. Schmidt. We have considered allergies, although it's not consistent with anything in particular (we tried removing foods and using Benedryl, which interestingly sometimes helps for a while) but nothing seemed to be addressing the root cause. I posted this concern on the Autism-Mercury Yahoo Group site and one person struck a cord. He said that liver stress can cause whole body itching. Between chelation, heavy metals moving through his body and then taking the additional medications, this makes complete sense. Of course, he recommended more testing, but he also said that if we increase his liver support and the itching subsides, we have our answer. I tested this tonight and it seems to have actually worked!! Although, only for about 2 hours or so. I am going to work with his Milk Thistle (which I don't think I have been dosing enough daily) and artichoke extract and might even add in another liver support, maybe going back to the liver life. Even with this newest event, we couldn't be happier with the results of the medications! We have to go back on them for one more round, to be sure we got all of the spores in every stage of their life cycle. Then about 7 days after we stop the Flagyl this time around, we are going to do another OAT test and see how his levels have changed. This is all fine and dandy, but what I am really curious about is how we will keep them down naturally, after we have stopped all of the meds. That is yet to be determined and only time will tell, but for now, I am enjoying the ride!

Here I am as the mad scientist! This is what it looks like when I split capsules. I wear the mask, because the DMSA and ALA give me a headache even to breath it. Since I am still nursing and have silver fillings (50% mercury) in my mouth, I like to take this precaution so as not to mobilize the mercury.

Antifungals and Antibacterials

Is that a word, antibacterial? It doesn't seem like it should be. So anyway, with the constant battle with yeast and clostridia, and his OAT test showing such high levels of each, Dr. Woeller recommended prescription strength meds. We added some bacteria fighting probiotics like Sacc. Boulardi and Culturelle, which do seem to be helping, but just not enough. Yesterday we had an appointment with our local DAN! doctor. He prescribed flagyl for ten days with a ten day refill, Diflucan for ten days on, ten off and another ten on, as well as Nystatin sort of indefinitely. The flagyl is an antibiotic specifically for clostridia, it will also address any hidden gardia spores. The Diflucan and Nystatin are both for yeast. Since Grayson had levels of tartaric acid, it means the yeast is interacting with the gut lining, nice huh? When I hear these things, I am envisioning little battles going on inside of his already little body, ACK! Not something a mother wants to picture. The Nystatin is not absorbed, so it will get the yeast floating throught he blood, etc. The Diflucan is more of a systemic and absorbed treatement to get the yeast that is consdiered "gut boring"....eeew!

We have been advised to start the Diflucan and Flagyl today then add the Nystatin in on day four, so we don't get severe die-off. Die off with gut bugs like this is hard on the body, especially the liver and gallbladder, because they are toxic little buggers and once you kill them, they are even more toxic, and are floating through and out of the body in high quantities. These chemicals they release are neurotoxic so we will likely see a worsening effect in about 48-72 hours. I ahve read that these symptoms can last from days to possibly even a week or more. Looking forward to it (hiding head under pillow).

Ok, well it's Friday which means it is time for me to get my mask on and make some compounded DMSA pills. I might even go out on a limb and try the ALA again at a lower dose, since we have the meds in place to help with yeast overgrowth, here's to hoping!!