Everyone has a hiccup sometimes

I thought I’d share my latest challenge to help others know that just because I’ve been doing this for a long time doesn’t mean we don’t run into challenges too.

We began round 184 this morning and this round we have a dose increase from 50mg to 60mg. My son takes his doses mixed into miniature peanut butter cups so I wasn’t sure how this was going to go with the large amount of powder for a higher dose.

He took his 6am first dose alright but he was asleep when he took it. When it was time to give him his 9am dose, he was still half asleep. (he’s a teen…they don’t like to get up in the morning)  So far so good, right?

Not exactly, he was up and had eaten breakfast before his next dose which was due at noon. I gave him his dose and he began to chew it up, then he gagged and spit it into the kitchen sink. He said it was too powdery, he gagged and it just came out. After that he felt nauseous.

Crud. I have a small window with which to try to re-dose him because in our case I was positive he had not eaten any chelator at all. We have a half hour window to get this done. I gave him a homeopathic remedy for nausea and we waited about 10 minutes.

I offered him two options: he could take it mixed into a teaspoon of juice in a syringe or we could try another peanut butter cup. I did not want to blow this round by stopping when we just began. So while he was laying down waiting for his stomach to calm down I started doing some quick thinking. How could I reduce the amount of powder in his doses…oh yeah, that’s right, I had ordered some 120mg capsules of ALA that came a few days ago.

I got the bottle out, and compared the capsule size to the 60mg I already had. They were the same size. This usually means I will end up with less powder when I split the higher milligram capsule in half. I did that and I had less powder from the 120mg capsules than the 60mg. Bingo!! Exactly what we need. Same dose, less powder.

I mixed up a new peanut butter cup using the 60mg I got from half of a 120mg capsule of ALA. Less powder mixed in much better. I added a few drop of vitamin D to make sure it was smooth and well mixed.

He was a trooper and did some slow breathing to calm down and not freak out that he might also hawk this one up. He tends to get a bit worked up if he gags on something and then he doesn’t want to try it again but he took it and drank some water. Done!

So moral here is as you get to higher doses, sometimes buying larger dose capsules than you need and splitting them up will result in less powder to work with for each dose. This is handy for those mixing chelator into juice, foods etc.

Now….back to day dreaming that my gaggy kid will someday learn to swallow capsules…sigh

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Good things do happen…..

Since this road is so long and often seems to be never-ending I thought I’d post some of the good things that have been happening recently in hopes it will inspire those feeling discouraged.  We recently returned from a trip to visit some immediate family that see’s my son a few times a year.  It has been a year since we have traveled to see them and in the past travel was often filled with frustration, sensory overload and meltdowns over situations which required flexibility. I am sure most of you know exactly what I’m talking about.

If we got lost or had trouble finding a place to use the restroom, or if plans changed as they often do from moment to moment on a trip, we could always expect him to be upset.

Not this year.

This time there was no evidence of an ASD child on a trip. He did not complain about the length of the car ride but was happy to amused himself looking out the window or listening to music. He was not bothered by the sleeping arrangements, the disruption in schedule or the change in food.  Everything was totally out of the normal schedule for him and he didn’t mind at all.

The proof in the pudding was the comment “Wow, he isn’t getting upset by that stuff anymore. He’s so different from last time you came to visit.”.

When we got home, he had a doctor’s appointment with a doctor that has not seen him in a little over two years.  Halfway through this visit she turns to me mid conversation with my son and says “Wow, I don’t see any of the autism symptoms anymore, he’s so much better than last time I saw him”.   And I responded with “yes, I agree. I don’t see it either” She smiled and said “this is wonderful he’s doing so well”.

I hope she puts that in the report from our visit!

Nothing more confirmatory than a doctor reporting that they don’t see the autism symptoms you’re son had 2 years ago.

As you progress, supplements decrease

Packing Supplements

Back in the early days Copyright The Edge of Autism 2010

I was looking back in our recovery journal and I had kept yearly lists of the supplements my children were taking at each year during our chelation journey.  I think it demonstrates progress in regaining health when you look at the list of supplements we need today.

The point being that as you get the toxic metals out, the body heals and works better. So you don’ t need so many supplements anymore.

This post is in no way indicative that anyone needs to take all of these or should take them all. This was the protocol as it was in 2006. Supplements were given differently than they are today, although all of them has a use in dealing with mercury poisoning.  Today the recommendation for children is far less than this but some of these have utility in treating the gut, adrenals, etc.

This was his supplement regimen at age 3 1/2 years.

  • Multivitamin/Mineral for ASD- 1 tsp per day
  • Probiotic-1-2 capsules at bedtime
  • Vitamin A-8,000 IU 1x per day
  • Vitamin E-400 IU 1x per day
  • Vitamin C-1800mg per day divided into 4 doses
  • B Complex-15mg 3x a day
  • Calcium-680mg per day
  • Magnesium 400mg per day
  • Chromium-100mcg 2x a day
  • Molybdenum 125mcg 3x a day
  • Zinc-25mg twice a day
  • Selenium-25mcg 1x a day
  • EFAs-FortiFlax 1 tablespoon per day
  • Grapefruit Seed Extract- 1/2 tablet 2x a day
  • Milk Thistle- 1/4 capsule 4x a day
  • Adrenal Cortex-1/4 of 250mg cap with breakfast
  • Melatonin-500mcg 1 hour before bed

We were dosing supplements four times per day and hiding most of them in food or juice because he could not take any capsules and refused most chewables other than gummi’s. I did add echinacea gummi’s when we started chelation because my son got runny noses and low-grade fevers in the very early stages of chelation when his suppressed immune system began working. This resolved fairly early on. These were not the only supplements my son used during our journey, just what he was on in the beginning. There were other things that were added here or there where needs came up like taurine, Immuno Aid, CLO, calcium with D, vitamin D, vitamin K, theanine, inositol…etc. These were used only as long as they were beneficial.

So what supplements does he take today?

  • MB12-1,000mcg per day
  • calcium/magnesium-1000mg/500mg 1x per day
  • a probiotic given only when needed if presenting with gas or constipation
  • CLO with A, D, E. However he’s been off these for weeks now.

When he is on rounds he gets vitamin C, magnesium, vitamin E and a bit of zinc as per the recommendations but he has reached a point in chelation where he does not required these daily. I do supplement in times of illness or if there are symptoms of deficiency for any nutrient.  We do add vitamin D in the winter, since most everyone in our family is deficient in this year round and we have had labs in the past that justify this.

He had not has symptoms of PICA off zinc in several years so this is no longer given daily at this point in chelation. He has been off of adrenal cortex extract for nearly a year now without any occurrence of adrenal symptoms.

I know that most parents hope there will be a day when they don’t have to give any supplements at all but I think in today’s toxic world with the lower nutrient dense foods that a multivitamin/mineral product might be something we all have to continue as a proactive means of covering those gaps.

I hope that some will find this motivating to see that the supplements requirements do gradually decrease. It took several years but eventually he began to need less and less.  At times it seemed like the stuff he was refusing to take, were the things he did fine without. So we slowly scaled back as time went on and he was less toxic and functioning better. In those early years if we missed his supplements you’d see regression in behavior or mood which were confirmation that he needed them. It was when we didn’t see any regressive behavior off of something that we knew it wasn’t really needed anymore.

Looking back at our supplement lists for those early years I recall how much work it was but how helpful it was.

The most promising thing here is that nothing happens to my son if he doesn’t take any vitamins. There are no regression, no re-appearance of autism symptoms, no worsening of any kind.