Tuesday, July 5, 2011

Sifting Through Supplements and Diets. You can work yourself into a frenzy; when is enough, enough?

Zach, age two and a half with his sister Rachel

Zach at one year
Zach, age two 

Zach was "normal" (I use quotations because I am fairly certain that our normal has liquified and is ever changing shape) till the seizures began at age three and a half.  The seizures began with one in June of 1994, then nothing till November of the same, at which time they came in clusters, one every two hours.  In April of the coming year, the Zach we had come to know and love had pretty much gone into hiding and we had a different transformed Zach to love.  We grieved the loss and began accepting our new life and Zach.

We didn't get the early intervention memo in the mid-nineties when  Zach began having seizures.  Back then the spectrum for autistic disorders was very narrow and in most medical circles, unless the child was born with it, diagnoses for autism weren’t given.  Since Zach wasn’t thrust down this melded path till he was almost four he was tagged with a seizure disorder and developmental delays, riddled with anti-seizure medicine and sent home.  We are pretty sure that he is on the autism spectrum, though to this day he goes undiagnosed.  We are trying some of the recommended diets and…a few of the overwhelming list of supplements advised by many DAN (Defeat Autism Now) doctors, as well as some tips from parents who, like us, through trial and error, have stumbled onto something that helps.  These seem to be helping Zach.  If I’ve learned anything, it is that simplicity, where applicable, is the key to sanity.  It would be easy as a wink to go overboard with the supplements and treatments recommended.  We try one at a time to determine which ones are doing the big lifting, then stick with those.

As I watched my little boy slip away I began frantic studies thinking it was up to me to come up with a remedy for him, like Augusto and Michaela Odone, the brilliant parents portrayed in the movie Lerenzo's Oil (though at this time I had not seen the movie, nor heard about their findings).  My table top was littered with all of the medical and naturopathic digests I could get my hands on.  I had four children and a husband to care for, a household and eight acres to tend behind the, "in-front" of me chore of curing my son.  I worked to keep some semblance of order in our home amidst the disruptive seizures.  I lost ten pounds, my hair began to fall out, I rarely slept and came near a nervous breakdown.  I was living and “not sleeping” with intense gut wrenching fear.  What were these horrible seizures doing to Zach's brain?  What would happen to us if Zach wasn't cured?  Would he die?  How would we go on?  What if he got worse and we had to care for him till he became an old man?  I’d never seen a seizure before, they were so horrific and I so naive, I thought that the seizures were causing this rapid transformation, now I know… there was an underlying metabolic shift happening in Zach’s body.

Sick little boy
Our Zach at age 5
As I hunched over my dining room table searching the pages of the books there on for a miracle herb, or drug, diet anything; I heard a quiet inner voice say simply, "You've lost your peace."  I knew this voice, but hadn’t heard it in a while.  I also knew precisely what the words meant.  I reluctantly closed the books, shelved them and began a journey of meditation and listening.  I didn't just stop helping, or trying, but I left off the urgency and dropped the, "it's up to me" mentality by staying close enough to hear and employ the courage and energy to do what was needed at the time.  Today this is the peace driven life I choose to live.  It has proven successful laying an overarching blanket of tranquility over our home for Zach to live inside, miraculously (most days) this peace bubble seems to transcend flung pooh and stress.

Zach is super sensitive to moods and troubled waters.  A peaceable and tranquil atmosphere seems to be one of the greatest “pills” we’ve found, but still, we have the occasional meltdown, or physical need for doctor needed assistance.  I try not to be moved from fear, stress, or frustration.  This is somewhat of a mind bending exercise, but worth the effort.

After seventeen years of trial and error with diet, supplements and drugs….

Things that didn’t work for us-

Hard drugs, Valium (rectal) to stop the ever growing clusters of seizures, this drug did indeed stop the seizures, but Zach became addicted and went through severe withdrawal when he wouldn't have a cluster.  Once noticing his depression and aggravation, we eased him off and haven't given him valium for probably ten years (for Zach, what was at first a simple tool to stop seizures, became very destructive).
Vitamin cocktails.
Intravenous Gamma globulin treatments.
We took Zach a homeopathic clinic for a month.  They gave Zach intravenous antioxidants, detoxed him for heavy metals, gave him B vitamin shots (called Mule Kickers) and we were giving him vial after vial of homeopathic remedies during the day and before bed at night.  I have no idea if this treatment helped.  At this point Zach was still verbal and interactive, but the staring and some strange behaviors, like repeating one word a thousand times were surfacing.  I don’t think these treatments were destructive, but it wasn’t the cure we were hoping for.  His cognizance continued to decline.
The Ketogenic Diet (brutal to follow) worked to hold off the seizures for 9 days and then everything resumed as it had been before the diet was implemented.
Mannatec's Ambrotose.
Lorenzo’s Oil.

Things that are working-

Anti seizure medications were, in the beginning, to many to list.  Some caused severe reactions in Zach, vomiting, rashes, sleepless nights, hyper activity, etc.  We are now down to two, Keppra and Dilantin.  The pharmaceutical companies are always coming up with new things to try.  I am grateful for these two drugs that give Zach some peace, but they have side affects, and I consider most of them the lessor of two evils.

About two years ago Zach's behaviors began to worsen (screaming and head banging, unhappy most of the day, not sleeping at night and began to show, what appeared to be, depression.  The three of us went into a bit of a tailspin…stresses brought on by sleep deprivation, outbursts of tears and over all, bumbling and barely coping with what we thought was seasonal allergies, or some sort of virus.  After a month, or more of this behavior our blessed eldest daughter did an internet search and found the one and only DAN doctor near us.  We booked an appointment asap and out the door we flew.

Dan intervention: After our first visit with the DAN doctor we stopped gluten and dairy and added a strong probiotic, calcium and magnesium at bedtime, had a blood draw and sent in fecal cultures for yeast overgrowth and other testing.  Within a week Zach was calmer and sleeping through the night.  We were ecstatic, but then the seizures and some of the behaviors came back..as always.  But we were on the right track.  We made another appointment and he suggested we have another blood draw (these are traumatic and very hard on Zach) and run some allergy tests.  He felt Zach’s aggravation was brought on by allergens and inflammation.  When the tests came back we were shocked to find that Zach was off the charts allergic to eggs and peanut butter, which he consumed every day and was moderately allergic to gluten and dairy.  Yeast growth was low and there were some thyroid issues (t-4 was given in varying doses, but we didn’t see any results and stopped after one year). We had to radically alter his diet.  We made an appointment with a dentist also to rule out abscesses and mouth pain (Zach must be anesthetized, so this has to be done in the hospital).

Diet: Today Zach's diet is as organic and pesticide free as possible.  We shop local and have modified his diet to consist of organic meats, fresh, or steamed vegetables and fresh fruit with some nuts and whole grains sparingly.  We applied for state assistance, to add some respite care and interaction to help with Zach's depression (some of these behaviors seemed to come on the heels of him getting his certificate of attendance for high school).  Respite care has been a godsend for all involved.  Zach loves his caregivers and so do we.

Seizures: We are now down to one, or two seizures every ten days.  At the hight of Zach’s seizure climb, he was having, fifteen to twenty grand mals per day.

Tools: Applied Behavioral Analysis; this method has been helpful in a small way.  We have tried some of the tactics and seen moderate improvement.  Zach has learned to hang up his coat and hat, remove his shoes, sock and pants, put himself back to bed if he wishes and pull up the covers and get himself a few cookies from the cookie jar (we can only put four cookies in the jar at a time.  Zach's OCD nature supposes that he empty and eat ALL of the cookies there in).
We purchased an ipad for Zach in hopes some of the apps would help with communication.  Presently he is not interested in working on something so out of his normal routine.  It has become his white noise machine for sleep and an option for movies.   We are working on photo recognition of family members and hopefully we will transition to other applications that will help us get the most of this amazing invention.

Zach’s handbook/binder has been a great tool for helping respite care workers learn Zach and follow his health and the changes in his routine.  We have put this together in a concise and neat way that is easily updated.  I have a copy of all pages on  my computer.  Zach had a website, which was nice also, but that became an added burden to update, so we are back to hardcopy only.

All in all I believe Zach’s improvement and (generally) happy state is due to his neurologist finding the mildest yet most effective anti-seizure medicine and prescribing the lowest dose needed for effectiveness; the implementation of the gluten and dairy free diet along with removing the other allergens and the out-of-doors, exercise and sunshine, we have found, are the best drugs “not" on the market.

What Zach’s (ever changing) supplements look like today (all liquid, or powdered capsules that can be opened).
At bedtime-500 to 1000 mgs of liquid calcium magnesium with 500 mg taurine and 500 mg tryptophan added.
In the morning-5000 mcg Now Ultra B-12; 50 mg liquid B-6 (with magnesium and zinc).
1260 mg Nordic Naturals cod liver oil (we are just adding pasture butter to go along with as findings are fairly substantiated that it works well in conjunction with cod liver oil in assimilation).
1000 mgs of TMG powder (trimethylglycine).
200-400 mgs of Selenium (I switch back and forth between antioxidants E, C and Selenium).
5,000 to 10,000 mgs of liquid vitamin D depending on the season.
400 mgs liquid Thorne folic acid and finally.
150 mg milk thistle for liver function.

Zach's morning meds routine + keppra and dilantin

Zach's nighttime routine + keppra and dilantin

Update October, 2014.  Zach no longer has the above regime, though it may help some.  He is now the proud holder of his medical marijuana card.  We are on a search to find him Charlottes Web (a species of marijuana that helps with seizure control.  Low THC, high CBD).  Zach is currently taking 5000 g’s of liquid vitamin D, 1 cap of a good probiotic and 3000 mg of an easily assimilated form of algae calcium morning and night.  1/2 t of Wellness Formula once a day along with 1 t of colloidal silver and presently his dose of Z-9 CBD marijuana coconut butter stands at 1/2 t three times a day.  This helps with behavior, but does not make him “high”.  It has been a godsend (he smiles a lot!)  

We are into simple and things that work here on Staunton Hill.  I never thought I’d have to change my mind about the stigma attached to the drug marijuana, but I have indeed come to find that this herb, like wine, or sex nowadays is made by God and in the right context, it is a healer and a help in time of need.  

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