May 6, 2011

Chelation update – Round 10

Wow. I am not sure where to begin. We have seen a lot of beautiful gains over the last ten weeks, but also a few negative side effects.

Let’s start with the good stuff. There is so much!

Language, language, language!
There is no doubt that Aidan’s language has improved since we began chelation 10 short weeks ago. Before we started chelation, Aidan was definitely good about communicating his wants and needs (ex: “Mommy, I want more water please”), but since chelation, he has become more engaged with the world around him.  He now narrates every little thing he encounters. It’s funny because before Aidan was talking, these were the type of kids that got on my nerves. You know, the kids that point out the obvious about EVERYTHING just to talk. It is pretty typical 2 ½ year old- 3 year old behavior. Of course now that Aidan does it, I LOVE it! To give you some examples: “The hippo is sleeping”… “He’s opening his eyes”… “There is a drum set on my shirt”… “Mommy is sitting on the couch”… “Mommy is cooking breakfast.” OK, you get the picture : ) It is constant and so wonderful to listen to!

He has also started to string together ideas and use successive sentences. For example, while we were at Physical Therapy (we will call his PT Mr. Phillips) Aidan said, “Mr. Phillips has whiskers. Daddy has whiskers. Daddy is a military man.”  It was wonderful to hear him pull together ideas to tell Mr. Phillips about his Dad.

Best unprompted new piece of language from my munchkin…drum roll please… “Mommy, I love you!”   Yep, he loves me! He came right up to me in the morning, hugged my legs and said it. My heart stopped beating in that moment. Those are the words that EVERY mother of a child with Autism hopes they will hear one day, and I heard it.  Yes, I am all warm and fuzzy inside just thinking about it. And believe me, I KNOW how lucky I am to have heard these words.  It is a blessing. I know mothers of children twice Aidan’s age who have never heard these words, and yet they still fight like hell and advocate for their kids, day in and day out.  These are the mothers who truly deserve to hear those words.

Cognitive ability
Aidan has been working on following directions with his ABA therapists for about six months now. He was still having difficulty unless he had a visual aide to help him. If you gave him directions without gesturing or showing a picture, most likely he would get confused and stand there frozen because he had no idea what to do next.

Now, I see his PT or ABA therapists give him direction and he just follows along right away. Without any gesturing or pictures to help him along.  For example, I made him eggs the other day and put them on the table. I guess he didn’t realize they were there because he came to the back room to get me and said, “Mommy, I want eggs” and I said, “well then go get them! They’re on the table.” He turns and walks down the hall toward the dining room and returns holding the plate with his eggs. I was shocked!

Answering questions
For the longest time I have said things to him like, “What are you doing?” but I never expect an answer. I’ve just been hoping for the day that he will know that he needs to respond.  The other day I asked him “Whatcha doin’?” and he answered me, “coloring.” In a similar moment I asked him the other day what he was drawing and he answered me, “A rocket ship going up to space.” SAY WHAT!?!?!? Are you serious kiddo? Cool!

Fine Motor & Gross Motor
He can drink from a cup!!!!!!! And he drinks from a cup like he has been doing it all along! No awkwardness whatsoever!

He has also begun to truly jump. He jumps like a little frog now, bending his knees all the way down before springing up and out. This is a huge difference from his little bouncy stim where he jumps in place.

Aidan’s physical therapist wrote a list of goals for him to reach by the end of the year. After only 4 sessions, he told me that he would need to re-write Aidan’s goals. He was blown away by the strength and coordination that Aidan gained in such a short time! And as I wrote in an earlier post, he began riding a tricycle after a few rounds of chelation.


The not so good things that we have seen over the last ten weeks...
Aidan has had lots of tummy issues. When our doctor told us that we better have his gut in good shape before chelating- he was right! Chelation has brought about yeast and bacteria flares that have caused a lot of alternating diarrhea and constipation for Aidan. Because of this, we have seen some aggressive behaviors reappear (which we are able to get under control when we stay on top of the Goldenseal and Culturelle). We have also had some of the spacey behaviors reappear (staring up at the lights), but have been able to control it with upping his antifungal.

He has been more sound sensitive since beginning chelation. He puts his hands over his ears and seems bothered by certain music. We haven’t seen this since he was 2 ½ and he would melt at the sound of a cow mooing or a horse neighing. I read about “old” behaviors and issues returning during chelation in a recovery story that I read (here). This definitely prepared me for our visits from the ghost of Christmas past : )

We have also noticed that his transitioning issues have returned. He is back to having a really hard time saying good-bye to people, or changing activities/locations. My husband and I have debated on whether or not this is tied to the changes in his body that he is experiencing vs. current family situations. My husband has had to go out of town a few times recently, and has been working extremely long hours to the point where Aidan does not get to see him every day. We think this could be part of his regression with transitioning. He does not understand why Dad is not home every day, and I think this makes him worry that Mommy and some of his therapists may not come back.

He has also been tapping his teeth CONSTANTLY. A few other Warrior Mammas told me that their child did this due to either yeast or calcium deficiency, so I am thinking it could be a calcium deficiency since we seem to have yeast under control. We’re off to the doctor for blood work tomorrow, so we’ll know soon enough!

His scripting and perseveration have been through the roof! It is driving me a little batty! I try to redirect him, but there are times where I just can’t bring him to a new idea. “Don’t bite me, cookie monster. Don’t bite me, cookie monster. Don’t bite me, cookie monster. 
Don’t bite me, cookie monster.”  “Aidan, come look at what Mommy has. What color is the frog?”  “Don’t bite me, cookie monster.”  UGHHHHHHH! Finally, I will just say, “Aidan, no more. Stop” and that seems to be the only way to stop it.

I look forward to writing the next update. I plan on writing an update for every ten rounds he completes. We actually just completed Round 13, and I already have more good news for the next update : )

I will leave you with a few more “concerns” from our developmental pediatrician appointment that have disappeared with 10 rounds of chelation.

Defiant behavior (you want him to do something- he will pretty much always do the exact opposite)

Squints his eyes as if he is having trouble with his vision. Like he can’t see straight.

Still not understanding or responding to simple instructions (i.e. hold-on, stay there)

Thinks of timeout as a game – does not understand

So, out of the original 32 concerns we had. We are left with 9. Of the 9 concerns left, 5 of them have improved dramatically. It has been almost 8 months since we came up with that list (you can view the original list by clicking here). Again, certain symptoms of Autism ARE TREATABLE AND REVERSIBLE! Don’t let anyone tell you otherwise!!!

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