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!

Hand sanitizer - make your own!

The fall is coming and with the swine flu scare on the horizon, I want to be prepared with a hand cleaner for the go that isn't dangerous. In all of my research I have, at minimum, determined that I don't even want to touch Purell ever again! So if you are concerned about the resistance to bacteria caused by hand sanitizers like Purell, try this one out. I found a recipe that works great, is nice going on, and doesn't smell bad.

Start your natural hand sanitizer by choosing a container. This recipe will work in plastic squeeze bottles, or mini spray bottles. I also have a great source for amber bottles that are best for anything containing essence oil and of course they don't leach chemicals! If you prefer plastic, just remember to look for a BPA and plathlet free bottle.

Here is the link for the site I buy our bottles from - http://www.specialtybottle.com/index.asp?PageAction=Custom&ID=2

They also carry HDPE plastic bottles (like the kind your milk comes in) - http://www.specialtybottle.com/index.asp?PageAction=Custom&ID=24

Use the following recipe---
2 parts aloe gel (NOT juice)
1 part distilled water (NOT tap)
1 part grain alcohol-vodka (NOT isopropyl, we used Ciroc grape-distilled vodka to avoid the grain-allergen issues)
4-5 drops essential oil of choice (NOT fragrance oils). Hint: tea tree is a great antibacterial and one of the best essential oils to add to a hand sanitizer recipe. I also added a few drops of oil of oregano which is an anti-fungal, anti-bacterial, anti-microbial...among SO many other things.

Essential oils, to date, have not been shown to allow microbes to develop resistance.

Mix all ingredients in glass bowl (preferably) with a plastic spoon. I don't use metal dishes or utensils because of potential reactions with the essential oils. Pour your hand sanitizer into your containers. You can add less water if you prefer a thicker product.

This is the link where I got it - http://www.ehow.com/how_2223499_natural-antibacterial-hand-sanitizer.html

RECIPE - a staple in our house - pancakes

With a year of GFCF (among many other "frees") under our belt, I have had a LOT of time to experiment with pancakes! Pancakes are a favorite and with the limited breakfast options we have, we NEED them and they must be healthy, hearty and easy to make. The other great use for pancakes in a gluten free diet is to replace bread for sandwiches. Other than muffins and cookies, it's the only bread-like substance in Grayson's diet.

We have tried all of the gluten free flours out there in pancakes and our favorite, by far, is teff. Teff is native to Northern Africa, but is now grown in the US primarily in Idaho. If you are culturally savvy you will probably know that it is the primary ingredient used for injera bread which is served as your utensil with Ethiopian or Eritrean food. It has a bit of a nutty bitterness to it when used alone, somewhat like a sourdough bread. There are also three types of teff, white, brown and red. The red is more nutritious and less bitter but the white is used more often and is the choice for injera bread. I use Bob's Red Mill red teff.

The low down on teff is that it packs more protein than wheat, has a high concentration of nutrients like calcium, thiamin and iron and is very high in fiber. The iron from teff is easily absorbed by the body, calcium (387mg) in one cup of cooked teff is about 40% of the USDA recommended daily allowance, and has twice as much iron as wheat and barley! Teff is an energy enhancing grain which makes it favorable for athletes.

Fun facts about teff - It is one of the smallest grains in the world measuring only 1/32 of an inch in size, in fact, it's name is derived from the Amharic "teffa" which translates to "lost", as in - it can be lost if dropped! ( Amharic is a Semitic language spoken in North Central Ethiopia) 150 teff grains are equal in size to one wheat kernel. 3000 grains weigh only 1 gram. Teff is used to make home brewed alcohol, is grown in Ethiopia as forage for cattle and has been used in adobe construction. Sounds like a Jack of all trades to me although I will stick with the pancake route.

Ah yes, pancakes, that is the point of this post, isn't it? So here is the recipe I have been experimenting with and have finally come to my ideal gluten, casein, egg, soy, rice-free pancake.

1 1/2 C teff flour
1/4 C quinoa flakes
1 tsp baking soda
1 tsp cream of tartar
1/4 tsp salt
1 1/2 C milk sub (I use hemp, but chocolate almond is really tasty too!)
3 tbsp oil
2 tsp xylitol

Mix it all up and drop it on a hot griddle. These are hardy and dark. We love the chocolate almond milk, but I know that some people avoid almond milk for either nut or soy sensitivities. The quinoa flakes don't change the flavor like quinoa flour does in higher quantities, it just adds some bulk to the recipe, because teff alone can be too flaky and flimsy for pancakes.

These are not very sweet, which makes them ideal as a bread substitute so adding more sweetness might be preferred by some people. So here are some great variations to this recipe. If you are adding these things into the pancake, blending is the key, because anything too chunky makes the pancake not cook through well. These could also be drizzled on top.

-blended zucchini (or any veggies)
-blended berries in or on top of the pancakes
-blended apples with cinnamon
-blended banana and chopped nuts
-organic blended pumpkin and cinnamon

I make double batches, separate them with wax paper and store them in the freezer double-bagged in freezer bags. Reheating is a snap in the toaster! They are great when you need to be on the road too, just hand a pancake (or two or four if it's my child) to junior and go.

Amazing video about autism

This video covers it all and in such a thorough fashion! Dr. Masson is a Harvard-trained pediatrician with extensive knowledge of the causes and biomedical treatment of autism. Her practice is focused on autism and the biomedical approach to treating it. She also has a video on the prevention of autism, during pregnancy. Of course, for us, it's too late for that.

http://vegsource.com/articles2/media_leila2.htm

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.