The Toxicity of Mercury and Its Relationship to Neurological Illnesses and Oxidative Stress by Dr. Boyd E. Haley

Beat down.

“God puts rainbows in the clouds so that each of us- in the dreariest and most dreaded moments- can see a possibility of hope.” – Maya Angelou

The last few weeks have been roses and sunshine for us. I felt like I was beginning to see the light at the end of the tunnel. This always seems to happen right before the storm comes. This is the illusion that Autism always presents. Autism gives you glimpses of what is possible, and then snatches it away never to be seen again, or possibly to be seen from time to time. It is enough to drive a sane person mad.

Yesterday was a pretty bad day for us. Aidan’s therapist told me that he was getting a bit aggressive with her, and tried to scratch her during their session. Fifteen minutes later, he came to me with a race track he wanted to put together, “fix it, please!” so I started to put the pieces together for him, but had some trouble lining it up. Well, out comes Mr. Hyde. Aidan lost it! He became extremely frustrated with me for not figuring it out fast enough and he grabbed at my neck, scratched up my face, and the only way I was able to stop him was with the assistance of his behavior therapist.

We finally calmed him down, but then five minutes later he came over to me and said, “The word bubbles are all done!”  I wasn’t sure what this meant, or what he wanted me to do (the other wonderful fun of Autism, figuring out your child’s alternative language). I was confused, so I said the sentence back to him, “The word bubbles are all done?”

OK, now he was pissed! I couldn’t figure out what he wanted me to do and he is obviously trying to tell me something that is important to him. He raised his voice and shouted again, “THE WORD BUBBLES ARE ALL DONE!” this time he was on the verge of tears. I tried to pick him up to hold him and calm him down but that made him even angrier. Then he tried to hit me and kept saying over and over while breaking down into tears, “ALL DONE!”…”ALL DONE!”… “DONE!”… “DONE!”  His repetitive words continued for about two minutes, and it felt like an eternity. As he was yelling out, he would not let me console him and he would not calm down. The more I tried to calm him the more angry he got.  Once he stopped talking he just kicked all around screaming and crying. He just couldn’t calm himself. Finally about fifteen minutes later he let me hold him, and finally began to calm down as I hummed in his ear. For some reason whenever he will let me do this, it helps him calm down. He was breathing so hard. It broke my heart. His behavioral therapist just sat back and let me handle it. It was obvious it really shocked her. In her 5 months with Aidan, she had never seen him do anything like this before.

The reason she had never seen this before is because it hasn’t happened in over 6 months. However, it used to be almost a daily occurrence. About 3-5 times per week this would happen. Something would upset him out of nowhere, and he would become hysterical. There is no feeling worse then not being able to help your child, and every time this would happen, I could feel a part of me die inside. I knew something was bothering my baby, but could not figure out what it was or what set him off. Was he hurt in some way? It was always so obvious that something went off in his brain to cause these moments where he COULD NOT control himself. 

When I woke up this morning and looked in the mirror I saw the huge bright red scabs under my eyes and on my neck. It looked like I have an abusive husband. I had forgotten about this part of our lives. The part of this journey that has always literally left me feeling beat down and a little defeated. Just when we think we figured out what was causing his aggression or his meltdowns, BAM! It is literally right back in our face. We still have work to do.  Something is still upsetting the balance of my baby’s mind.

I have given myself a morning of coffee and self pity, but now it’s time to scrape myself out of bed and get back to work. No matter how beat down I get, I will never give up. 

Autism is treatable and reversible.

Before I was ready to admit that Aidan could have Autism, I watched a video from Autism Speaks that SCARED THE (insert expletive) OUT OF ME! It is called Autism Every Day, and it shows a day in the life of four mothers who have children with ASD. I cried out of fear during the entire video. One of the little boys reminded me so much of Aidan. He wouldn’t talk to anyone else or be with anyone else but his Mom, and he stood in one place shifting his weight from one foot to the other repetitively. Aidan would do this from time to time while watching TV. However, after I watched that video, I wanted to believe so bad that Aidan did not have Autism. Watching that video made me so depressed at the thought that this might be our life- divorce, bankruptcy, constant tantrums, and dangerous situations with no end in sight. Should I go ahead and just jump off a cliff now!? If Autism Speaks wants to push education and early intervention, they are doing a really BAD job. As a parent, you NEED hope. Hope that things CAN and WILL get better with early intervention or ANY intervention. Instead this video made me FEAR getting a diagnosis for Aidan.

Thank God for my friend that emailed me a video of J.B. Handley (the founder of Generation Rescue) describing why he felt that Autism is a misdiagnosis for mercury poisoning. WOW! Could this be true? Mercury poisoning? Kids recovering? Does this mean Autism is not forever? We can do something to truly help Aidan?

J.B. Handley, as controversial a figure as he is (and I don't agree with all of his views), was one of my stars in a very dark sky. Once I watched his interview discussing the recovery of many children using chelation, I googled his name and found the short documentary Autism Yesterday. This time I cried, but they were tears of joy. I imagined Aidan recovering just like the children in the video, and it gave me this feeling of power. All of the sudden I went from feeling completely helpless, to the Warrior Mamma who was ready to kick some ass!  That was the night I finally looked at the Jenny McCarthy book that a friend gave me, and knew I was ready to honestly look at whether or not Aidan had Autism.

Thank you J.B Handley. Thank you for shining a light on my child’s underlying health issue. I am truly grateful.

Where we are today

Here is a summary of the things that we feel have helped Aidan the most since receiving the diagnosis:

ABA

After receiving the Autism diagnosis, Aidan was eligible for 10 hours of ABA therapy per week under my husband’s insurance plan. We found two wonderful therapists for him to work with after school, and have seen many improvements since he started. His receptive communication skills have really improved. He has become interested in puzzles again (completing 48 piece puzzles on his own)!  He can now follow two (and sometimes three) part instructions! He can answer a few questions (What’s your name, how old are you, etc.).

ABA has definitely been a huge push in Aidan’s progress.

Occupational Therapy

The doctor also referred Aidan for OT twice a week. This has also been really huge in his development. His OT is trained in Floortime/DIR and when he is working with her, you really see a different child emerge. He has much more spontaneous communication and imagination. Floortime just seems very organic, while ABA can be a bit rigid at times.

Our ABA therapists are very playful with Aidan, however, I find that with ABA, it is easier for Aidan to get stuck on scripting. Sometimes after a session he will say, “do this” or “eyes on me!” and you know it is from an ABA session. Floortime never uses language like, “do this” because every lesson flows naturally with whatever the child seems to be focusing their attention on during a session.  It’s like play therapy.

I wish we could afford to do 10 hours a week of ABA and 10 hours a week of Floortime to get the best of both worlds. What I wouldn’t do to win the lottery and pay for any and all interventions that may benefit Aidan! : )

Methyl B12

Just as Aidan began ABA, we started giving him Methyl B12 injections every three days. This was another great “push” in the progress of his development. We did not notice anything with the first few shots (just some increased energy), but by the 3^rd injection we really noticed an increase in language, and he finally started to include us in his play. He would come find us in another room and say, “Come play in the playroom.”  It was wonderful!!

Preschool

Aidan began special education preschool one month after being diagnosed. Honestly, the only progress that I have noticed from this was in his ability to transition from school to home and vice versa. It was VERY hard for him for the first month or so, but I think that having that daily routine really helped him become comfortable with making changes. We started the Methyl B12 injections about a month after he started school, and the teacher told us that his progress during that exact time was “exponential.” 

At the end of the month we will move Aidan to a new Charter school that has opened specifically for children with ASD. All of the teachers and aids are trained in ABA. We are very excited!

Andy Cutler Chelation Protocol

Aidan recently did a DMSA challenge test, and we found that his lead levels were off the charts! He was moving some other metals as well (mercury, aluminum), but from all of the other parents I have talked to (and the reaction of our DAN! Doc), I think Aidan is one of the exceptionally high cases. We went ahead and did an EDTA IV challenge as well to see if that would move other metals as well as the lead. It didn’t, and unfortunately I don’t feel like the EDTA was a good thing for Aidan. Ever since we did this he has been tapping his teeth together obsessively and he seemed to have some tummy issues.

Getting the results back put a lot of his developmental issues into perspective for me, but at the same time it was scary as hell. Results like this make you start thinking that there is a chance your child has PERMANENT brain and nerve damage.

I immediately began researching different chelation options and read Amalgam Illness. I found that Andrew Hall Cutler’s protocol was the safest thing for Aidan. I encourage any parent that is considering chelation to read his book. In my opinion this is the ONLY way to chelate. Other options are far too dangerous and will redistribute metals in the body.  I wish I had never done a challenge test!

We just recently finished round 6 using both DMSA and ALA, and we have already seen some wonderful gains. He is putting together longer sentences on his own. He can finally ride a tricycle! He also seems to be going out of his way to get our attention and try to converse (of course it is not yet appropriate, but he tries!). He also is beginning to show the intial signs of empathy- his OT was pretending to cry and made a sad face. Aidan made a sad face and said, “you’re sad.”  That was the BEST!!!! I can’t even tell you how many times I have been hurt or cried in front of him, and he just goes along as if nothing is wrong.

Yeast Treatment!!!!

A steady yeast protocol has been so important to Aidan’s progress. When yeast gets out of control I feel like it masks all of his gains. Right now we just use caprylic acid, probiotics, culturelle, and goldenseal. I was very aggressive with this when we started chelation. I dose throughout the day (always at least 4 hours apart so that your antifungal is not canceling out the probiotic). For the first 3 weeks of chelation, I would dose caprylic acid/ goldenseal when Aidan woke up, then probiotics/culturelle around noon, then another dose of caprylic acid/goldenseal in the late afternoon, and a nice big dose of probiotics/culturelle at bed time.

I always suspect he is having yeast or bacteria issues when I see puffiness or darkness under his eyes. Usually it is bacteria when it is accompanied by aggressive behaviors.