Treating Autism: The Search for Safe & Effective Treatments

Many are aware of the death this week of Abubakar Tariq Nadama after receiving intraveneous EDTA in Pennsylvania. Articles are appearing in every paper across the nation and beyond reporting this event. The incident has many parents confused and concerned, wondering how best to treat their ASD kids.

Papers are reporting that Howard Carpenter, executive director of the Advisory Board on Autism-Related Disorders, has stated, "It was just a matter of time before something like this would happen. Parents of children with autism are desperate. Some are willing to try anything,"

This is true. As I am sure you well know, parents ARE desperate for ways to treat autism largely because the majority of the medical community has left us alone to search for answers and treatments for ourselves. We scramble for information from other parents for answers, and find many in the same tragic situation: left with an enormous beast to kill (autism) and being turned away by doctors, brushed off and misled to by government agencies supposed to protect us, and told that we can't sue to cover our medical expenses for our children. The media often sides with "Big Pharma", The president stays mum, and pediatricians don't know what to do other than promote the ever-expanding and equally questionable barrage of vaccinations, including the newly recommended flu shot containing thimerosal.

Of course we are desperate!

Many autism-related organizations are fighting for the truth to come about about what happened to cause this epidemic of autism, and to remove thimerosal from vaccines. These are extremely worthy causes and should continue. I applaud you again and again. But right now, parents like me are looking to you for answers on what to think about this recent death of this small autistic boy.

The procedure used, intraveneous EDTA, was quite risky, overlooking far safer (and slower) methods of chelation such as transdermal applications. In many papers covering this story, however, this difference is not being reported. Many parents are right now hanging on the edge of our seats wondering what we should do and trying to understand chelation. Parents have a need to know the specifics of each type of chelators, including the methods of administration (IV, oral or transdermal). There is a tremendous difference in terms of safety between a transdermal chelator and an intraveneous chelator.

I ask autism organizations consider joining to work on safety in the treatment of autism. I know that autism is treatable because my son has already greatly improved with special diets and MB12 shots. The evidence is before my eyes, but many parents do not know where to turn for truth. Many are looking to you.

I urge parents to educate themselves as much as possible before beginning treatments. I find the Autism Research Institute to be an organization that I personally trust. Parents can go to http://www.autismwebsite.com/ari-lists/danus.html to see a list of physicians who have attended one or more DAN! conferences, as well as a number of other health practitioners whom we believe to be sympathetic to the DAN! approach. DAN! stands for "Defeat Autism Now!" and follows biomedical treatments as researched by the Autism Research Institute. This is what I do, but as a parent, you must be the gatekeeper for your own child's health.

It's sad to say that parents must do the reseach that would be best done by gov't organizations, but the fact is, they haven't helped out in this area and we HAVE to do it.

I am concerned that there are people out there who will rob us blind if we are not vigilant, not to mention endanger our kids. We have to pay attention and do our homework before putting our kids in the hands of a doctor .. or proceeding with a treatment for that matter.

Some parents may not have the time or resources to do the reseach, and there is some danger in promoting a treatment in that they may fall prey to the sharks who don't know enough to properly administer or prescribe biomedical approaches. Personally, I just want to be careful how I proceed on my own blog. I believe that biomedical treatment have greatly improved my own son and I hope that more people consider them...but I want them to do it wisely.

Each organization is fighting a battle against autism, but it's time to unite forces to bring light the topic of finding safe treatment for the disorder. I believe that educating people on exactly how to find good doctors willing to walk with us in the journey, and how to watch out for the sharks, because let's face it, the sharks are out there.

David Kirby: Autism and Chelation: Where is the Science?

I have been stunned and greatly saddened by the death of a four year old boy undergoing intravenously EDTA, a chelator, this past week. I have written many autism organizations begging for their comment in this matter.

This was a different chelator than the more typically used oral and transdermal chelators. Most of the families I know are using transdermal chelators, which take much more time to work... but in my opinion, that is a far safer way to go.

Leave it to David Kirby to ask the right questions in this matter.

I'll be writing more on the quandra of parents searching for answers with very little help from the medical committee. I have many friends who say that chelation is heling their ASD kids. We need doctors and research to help back up the many similar claims coming from the autism community. We need research to determine the safest ways to treat our kids, and we need those answers soon.

Please read Kirby's article:

David Kirby: Autism and Chelation: Where is the Science? - Yahoo! News

Autism loophole closing - PittsburghLIVE.com

PittsburghLIVE.com Reports Parents of Autistic Children May Have "Autism Insurance Premium"

Three Steps Forward, One Step Back

One of the strangest, and often most confusing, things about autism spectrum disorders is the inconsistency of the illness in terms of behavior and speech.

Alec is downstairs right now working with a UNC-Charlotte student who is studying to be a play therapist. She's having a super day with him, and I can hear him asking her questions "What have you got?" "Can you help me?" He is speaking in sentences more often than not these days, but I can see in his expressions the struggle of forming each one.

On days like today, I can rest a bit. I can look and see his progress, and it's exciting! But, every several days or so, Alec will have a "bad day" and he'll seem to regress, losing all of the wonderful improvements he has made.

On those days, at first he'll become more irritable. He'll tantrum, something he used to do many times a day but now he only does once ever few days. His language will be garbled. He'll slip into what Matt and I refer to as "robo-talk". He'll spin, he'll be hyperactive, his eye contact will go.

Those days throw me off. It takes me some time to understand that it's a regression and that Alec is not just misbehaving. It's really hard to keep your finger on what is going on with him biomedically, since his diet (and infractions of it) seem to have such a dramatic effect on him.

Discipline is a hard thing, too. All four year olds misbehave and need redirection. On the days when he has regressed, it will seem at first as if he's just being difficult. Then suddenly, it will slap me in the face, the "a ha!" and I realize that he has eaten something he shouldn't have eaten, or a supplement is not quite right, or there is something I can't even begin to figure out throwing him off. So, it's very hard to know when Alec needs discipline and when he's simply frustrated because his clarity is gone. And believe me, I know that is what is going on with him because you can read it on his face. Maybe it's also the way a mother just knows. It's like Alec realizes that something he had, clarity, is suddenly gone and he's angry about it.

The other night Alec was have a very bad night while we were going through the bedtime routine. One of the "clues" I have found when Alec is having one of his bad days is that he will be more repetitive. The obsessive compulsive disorder part of autism becomes very apparent.

Alec was very upset because his sister Elise was on their potty. Matt and I tried to persuade him to go to our potty before going to bed. Normally, this would be no problem, but that night, it was everything to him. He wailed and cried at Elise to move. (Elise unfortunately was having her own potty problems, but that's way too much information for you!) I finally picked him up screaming and took him to our bathroom. He cried for a long while and would not go. Finally after what seemed like an eternity, he went, but very reluctantly.

However, when Elise finally got up, he insisted on going to the potty again in HIS own potty. I allowed him to do that and put him in bed. He cried and struggled with the words to tell me he wanted to go BACK to the potty again. Finally, exasperated, I just let him go back to his potty and have all the time he needed. When at last he allowed me to put him to bed, he was still crying quite a bit. You could see the frustration as he tried desperately to find the words to say something to me, but I couldn't understand what. It's incredibly frustrating when you can't understand your child when he so wants you to understand him.

At last, though, he calmed down enough and whimpered, "Mama, Mama, Mama, I'm, I'm, I'm" and he cried a bit more and then struggled with "I'm, I'm ss, ss, I'm sorry, Mama".

Alec has never told me he was sorry on his own, without prompting before. We both sat on his bed and cried. Here my little boy was telling me how sorry he was because he was being troublesome, when in fact, he couldn't help it.

So, I know he's frustrated on his bad days. I need to draw from God on those days to find more patience, and I always ask for the wisdom to know what Alec needs at any given moment. I pray that all of the time.

But today is a good day, and I will go and enjoy it with my son.

James 1: 4-6: Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.