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


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.

Round 177 Update

After a long and arduous January we were finally able to do round 177 for my son, and 117 for myself. I had intended to do it in January but between a nasty cold he caught and then other things, it just didn’t happen. So this made a 6 week break for us since our last round.

We aim for 1 round per month but sometimes we do take longer breaks and then “test” the waters by doing a round to see if there is a response. I’ve also been doing antivirals on myself which has been a challenge. We did get a response this round.

What we saw this round was different from the past year of rounds in which we really had no side effects. This round we both felt a bit irritable on day one. I had adrenal stress for day one and two. My son also reported tactile defensiveness sensitivity which he hasn’t had in quite some time and certainly not aggravated by a round. We used to see this improve on rounds in the very early days but we reached a point where chelation didn’t seem to affect it either way. So I was very surprised to see it aggravated on this round.

We plan to do a follow-up hair test in the next few months even though they are not useful for diagnosis. At this point it’s for my curiosity to see when he stops meeting the counting rules. It might also give me a glimpse at his thyroid and adrenal status.

I was beginning to think that maybe the end of chelation was near because it did not cause any symptoms good or bad, it really hasn’t for over a year now. I knew we were not done but we have to be getting close considering he doesn’t have any ASD symptoms anymore.

Thankfully the sensory flare disappeared after the round ended. Overall once we were past the first day it was fairly easy. I’m glad the sensory flare was temporary, I was waiting on seats edge to see if it would resolve post round and it did.