Puberty Setbacks…..it’s real tho

Over the years I have heard reports from many parents about “puberty regression”. I didn’t doubt them by any means and trust me, I still don’t now that we are in the throes of puberty. What I don’t understand is the mechanisms behind it (although I have some ideas now) and I’m not sure you can use the word “regression” per say, but more “an overall worsening” from where they were before puberty.

It seems that we are in the throes of that right now. I wasn’t sure I was going to write about it but then again..someone should. I don’t want any parent thinking that its smooth sailing because we did 196 rounds on him. I wish that were the case but struggles still happen even this far into it. Puberty is rough on all humans…but it is exceptionally so in autistic children.

Just the sensory implications of puberty alone are massive. Some of the protests we see involve the need to wash more often. Being unhappy about all this hair that’s growing everywhere. It itches, feels weird etc.  Addressing shaving with a kid that won’t put water on his face. Being more clumsy because they are growing faster than their balance system can keep up. This is also the time we start expecting more of our kids….”it’s high school ya know, time to buckle down”. It’s the old “what are you going to do with your life, you’re almost an adult”, except emotionally most our teens are not at this level of maturity. For whatever reason children on the spectrum often have delayed emotional maturity compared to their neurotypical peers.

We have to take a step back and remind ourselves….they are not at the same place their same age NT peers are or where you were at that age.

It’s so much pressure on changing bodies that are already overwhelmed with coping with things NT’s don’t notice.

The change in hormones is expected but this is also when kids with low adrenal and thyroid function really start struggling and need treatment for those things.  Less cortisol means more anxiety, low thyroids mean more fatigue and more anxiety as it drags the adrenals down too.

This is some of what we are seeing with my son:

  • a reappearance of anxiety. He’s been free of this and off adrenal support for quite a while…then Wham….it’s back! Turns out his thyroid went. Treating it helping the anxiety issue as well as restarting adrenal cortex glandular.
  • We are also seeing a lot of sleep disturbances, they stay up late, sleep in late. Some changes in circadian rhythm are normal at this age. It shifts back again in their 20s. However, frequent night wakings or waking up at 2am wide awake indicates they need more adrenal support.
  • Don’t think they don’t also have some teen rebellion because I’m seeing it manifest as refusing to take supplements or not wanting to stay gluten-free.
  • Expressing some fears or exacerbation of old fears: to germs, bugs etc. (this is coming from adrenal fatigue most of the time)

It’s complex….I’m learning….it’s our first run with puberty with a kid on the spectrum.*

I did his ATEC again today because I thought maybe I was imagining the transformation I’ve been seeing..but no..I’m not imagining it. His ATEC was 19….NINETEEN!  ACK! What happened?

You might recall it was Zero only two years ago (2015).  Two steps forward…one back…keep marching…..

We will get back to zero because we are addressing the endocrine problems and we keep chelating!  It’s all par for the course and we need to remind ourselves that even non-toxic teens experience shifts in their bodies during this time that may affect behavior. The key is making sure it’s not adrenal fatigue or hypothyroidism which do become more obvious during these years if they have it.

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What does the timing for a round look like?

Some of the questions I receive about chelation are based on how to set up the dose times and how long do you have to chelate? At first this all seems rather daunting and complex but I promise, by the time you have done 10 rounds it becomes like brushing your teeth….well almost….if you add in getting up at night.

I’ve always heard that “it’s so much work getting up a night, how do you do it?” Well, my response has always been “it isn’t any different from when I had to get up to feed my newborn son. He needed to be fed, I got up. Well he needs this medicine…so I get up. It isn’t glamorous but it is working.

Over the years our timing schedule has changed depending on things like school schedule or chelator used but what is consistent is that we must dose by the half-life and the rounds cannot be shorter than 64 hours.

Since all rounds at some point should use ALA (or you’re never going to get mercury out of the brain) the following are based on 3 hour dosing schedules for using ALA (you’d give DMSA at the same time if using both):

This works for kids not in school or on a three-day break from school:

  • Day One: 6am, 9am, 12 noon, 3pm, 6pm, 9pm, 12 mid,
  • Day Two: 4am, 8am, 11am, 2pm, 5pm, 8pm, 11pm
  • Day Three: 3am, 6am, 9am, 12 noon, 3pm, 6pm, 9pm, midnight. -66 hours
    • *If I end at 11:00pm it’s 65 hours which is also acceptable.

Kids in school aren’t able to take doses during the school day and would chelate Friday after school through Monday morning. It is never advised to involve school in this process for many reasons: doses get forgotten, people misunderstand what this is and call CPS on you…I’m not kidding, I’ve seen this happen. Just skip the hassle, take care of this on your own.

  • Friday: 4pm, 7pm, 10pm
  • Saturday: 2am, 6am, 9am, 12 noon, 3pm, 6pm, 9pm, 12 mid
  • Sunday: 4am, 8am, 11am, 2pm, 5pm, 8pm, 11pm
  • Monday: 3am, 6am, 8-9 am.
    • *These rounds are usually 63-64 hours, you really want 64.

If your round is not this long you need to figure out if you can pick your child up from school on Friday or drop them off Monday morning to add that additional dose.  Sometimes avoiding the bus ride will give you the extra hour or two you need. If you have children in school you also need to take advantage of every 3 day weekend, holiday break and the entire summer break to do more rounds on a three-day schedule where possible. This will be easier because you only get up two nights, not three.

The times I posted are going to vary depending on what time you plan to give the first dose. You have to maintain the 3 hours daytime dosing. You can do that as night as well but it isn’t necessary because when your child sleeps, their metabolism is slower. They will not process the chelator as fast.

You finish your 3 days/two nights and take at least 4 days off before the next one. Most can manage a round a week. There is room to do longer rounds but this doesn’t work for everyone. Just remember as many hours as you chelated, you need to take at least that many off.

An important key to remember is that doses cannot be given late by more than one hour!!  Keep track of who in the home is dosing. This avoid confusion with forgotten or extra doses.  Yes this happens, more than you think it does. Make a schedule, print it out, post it in plain sight. Check off the doses as they are given. Or use a method similar to this.

We are all human so do the best you can but don’t beat yourself up if you can’t spend the entire summer doing a round every week. I’d advise it if you can, but I get it if you can’t. The key to remember is this process takes a long time. The average is 100-300 rounds and some need more than that.So you really do want to do as many as you can feasibly manage.

Kids grow up, they don’t want to take supplements or chelators anymore. They get jobs and go to college….and at some point compliance may become an issue. Ideally you want chelation done before those things happen. Plus…the sooner you get the mercury out, the better they will be in the long run.

The exception here is going to be for those that started this process when their children were already older. They will have fewer choices and fitting rounds in regardless of busy teen schedules will become a priority. Adults have jobs, families to care for but they still manage to chelate, it’s just not as easy on your schedule. (case in point..me!)

Don’t get discouraged…don’t get overwhelmed…just take ONE round at a time.

Mantra: 3 days on, 4 days off, 64 hours minimum, don’t be late by more than an hour!

Chelation Update: Round 185

We finished round 185 at his old dose of 50mg of ALA. After the experience with the dose increase on round 184, I decided we need to do a few more rounds at 50mg before we try the increase again. I have never been one for pushing dose increases if it made the child more uncomfortable because often times you need to sort out what will help those symptoms so they can be comfortable instead. Do I need more antioxidants? Do I need to just do a few more rounds at the current dose before raising again? Are the adrenals supported well enough? Is my child sleeping well?

Since I have been at this so long in our own case I know it’s a matter or we need to wait a bit longer at the current dose and then try it again.

I have no gains to report this time either but we don’t seem to have “gains” anymore in the sense that you do early on because most of those ASD symptoms are gone. What we generally see is just a happier child. He just seems more himself on rounds.  We are at a point where we’re are on the tail end of mercury removal and huge gains have already come. So it’s important to remind ourselves there is still a reason to continue chelating. That mercury is not all out yet!

This round was otherwise better than the last. He did not experience the symptoms he did at the higher dose. Something to always remember is pushing the doses up higher to try to “do more faster” is not always going to work because the goal is to be comfortable if possible when chelating.

I won’t even get into how tired I am after this round….I did not get a lot of sleep, since I had trouble falling back to sleep after waking at night. On a good note though I did complete round 125 with little to no symptoms other than the tiredness associated with sleep disruption. (200mg which is above the 1mg per pound limit for adults but at this point it’s necessary to “prove” if mercury is actually still a problem for me)