Sensory Again

I think I might have figured out the backsliding with sensory.  I hadn’t realize it but we had let him have him a gluten infraction several times in the past few weeks. So what I’m doing now is “proving” my theory by adhering strictly to the diet, no exceptions. I’m going to see if we see the sensory settle back down. If so, that would confirm my suspicions.

This would also implicate a gut connection. Joy….I’m struggling at healing my own gut and while I’ve made some progress through lots of webinars and adding things in, I would have to revisit the dreaded digestive enzymes for him if that is also the case with the gluten.

Anyway, for those following our sensory journey I wanted to tell you what has transpired since my last post. I can’t really be sure about gluten’s role in his sensory. He insists he doesn’t notice a difference.

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.

 

How long is the road to recovery?

The Passage of Time

The Passage of Time (Photo credit: ToniVC)

I’ve worked with so many families over the years, helping them get started and teaching them the ropes to this biomed/chelation road.  The most common question I encounter is how long is this going to take?

Most are under the initial impression that you do a few rounds and you’re done. However this is so much more than that and takes so much longer. Biomedical therapy becomes more than “a treatment” you do to your child, it becomes a lifestyle for the health of your family. You end up changing your diet, how you clean, and start learning about things like fungal infections and immune systems.

Many parents are surprised to learn that chelation is rarely completed in less than 200 rounds for children with autism. Even the adults I’ve talked to who chelate for mercury find it takes years. The reason is because it takes years to get poisoned and removing these metals any faster really isn’t safe.

I know it’s often difficult for parents to have the patience needed to keep at this for 3-5 years or 100-300 rounds but I cannot recall an autistic child recovering with less than 200 rounds. This is not the same for children who have mercury poisoning but are not autistic. I have seen them cured in less than 200 rounds.

This is not to say ASD children don’t improve at all before 200 rounds. In fact it certainly does. They slowly improve bit by bit over the course of rounds and years. Some children have impressive “wow” gains on rounds (like my son), followed by months of nothing (stall period) and other children just have small progress slowly. But they do become healthier and improve.

It seems our kids have been affected more profoundly in different ways than non-asd children. This is something that was easy for me to see because I chelated two children, one with autism and one who didn’t have autism.  Both had mercury poisoning. I also followed the reports of chelation of hundreds of autistic children and mercury toxic adults/children without autism.

What I have found is that children with autism take longer.  This is most likely because mercury toxic children without autism start out at a different place than autistic children. Mercury toxic children may suffer some behavioral ailments, allergies and endocrine issues but don’t really have any significant developmental delays.  And children with autism have the full spectrum of health and developmental issues from mercury. For them, the road is more challenging.

I began chelating my neurotypical 10-year-old at the same time I began with my autistic 3-year-old. The neurotypical child stopped meeting counting rules for mercury after only 76 rounds of chelation. The autistic child, still meets counting rules today for mercury and has had 143 rounds.  (as of the date of this post)

In that time the neurotypical child regained adrenal function, reduction in allergies, cured of gluten allergy, and no longer suffers depression, mood swings, anxiety and panic attacks, fatigue or misinterpretation of social situations. I have done 127 rounds on my neurotypical child even though the hair test stopped meeting rules in 2010. We continue periodically to work towards a recovered thyroid. We did cure her of gluten intolerance. She reacted severely to gluten until last year when this finally just vanished. We did nothing else to treat it but chelate her periodically once she stopped meeting counting rules.

Over the years I noted in my journal the gains and changes that occurred in both children and the neurotypical child definitely reached our goal in less rounds.

Early on in our journey it was estimated that it would take 3 years to chelate my autistic child with a very toxic hair test.  The equivalent of 152 rounds. However in the real world most parents cannot do a round every single week for three straight years. Kids get sick, parents get sick, you have to go to work….real life gets in the way.  So for us it has taken much longer. But even if we did manage weekly rounds for those three years I still do not believe 152 rounds is the magic number. Why? Because we are close to that and I do not see another eight rounds turning my son’s hair test normal.

My new forum is loaded with parents who are now past the 100 round mark or approaching it. Their children are still on the road to recovery. Far better off than when they started but still not done.  Some of them are past 180 rounds and still have toxic hair tests.  These kids have come a super long way and improves in so many ways, some of them going from non-verbal to speaking, but still they have mercury.

In my years on all the forums combined (Autism-Mercury, Frequent Low Dose, Recovery From Autism, and now Fight Autism and Win Yahoo) the consensus seems to be that our kids are going to need closer to 250-300 rounds to cure their mercury poisoning. This post is not to discourage you from doing this therapy. Quite the opposite. It’s to let you know what is realistic to expect and that you are dedicating a lot of time towards healing your child. When parents ask me if it’s been worth it, worth the last six years of my life….you bet!!

I got my son back and even with a few remaining quirks he’s an amazing little boy who is affectionate, thoughtful and smart. I would do it all over again and we still continue to this day because it is still helping my son with those small residual things.

While I always hope for a fast recovery for every child I also don’t believe in misleading anyone to think this is a quick fix cure.

And as I have said many times on my forum “its a long road but one worth traveling”.