September 20, 2004

Chelation - Round One goes to the Challenger!

Words cannot describe how much hope I feel right now. After his first round of DMSA, 5 days, Chandler has taken some giant steps back to the little boy he was during his first year.

His eye contact is amazing, not quite what a regular child does, but now he is in the ball park. He will stand in front of Scott and I and look back and forth at each of us until one of us responds and pays attention to him.

I have set a few mental benchmarks for him so that when I saw them I would know that he was getting better. One was the first time he would call me "mommy" which he did in June, the first day that he was given DMSA as part of the "chelation challenge" to see if he had any metal poisoning. Another that he has yet to pass is the day he calls his big brother by name, as he has never referred to him with anything other than a shove or the occasional laugh.

This week we passed a benchmark when my boy did something I have been waiting six months to see. Friday at speech therapy he pointed to something! The therapist pointed to a tiny picture of a butterfly, and Chan pointed and said, "Bufry"! Sunday at church we were waiting for the elevator and he pointed to the floor number and said, "One".

Saturday, my mom bought him new shoes and he was kinda rolling up on his toes feeling them out. My mom and I started jumping and saying, "jump" and he watched both of us for a minute or two and then joined in. Looking at us straight in the eye and saying, "jump" with a big smile on his face!

Sunday morning we were driving to church and Scott and I started singing this song that plays on Noggin to our older son. Really simple song, "open, close, open, close. Up and down and up and down. Hot dog, Hot dog. Yum, yum, yum. Clap, clap, clap." When we stopped, Chandler started singing! "Haaa daaaa, haaaa daaaa. claaa, claaa, claaa." We were totally stunned so we sang the song again and he repeated it!!! I practically wet myself.

The list goes on and on. He is calling me "mommy" almost as much as "ma, ma" now. He runs to the kitchen at least once a day and asks for an "apple".

Yesterday were at a birthday party and there was a guy in a big bear costume and he said, "bear". He has been saying "bear" today. He was playing on the slide and would go to the top, look at me with huge eyes and a giant smile that very clearly communicated, "Hey mom! Look at me!", then slide down and do the same at the bottom. "Mom! Did you see what I did!" He did it over and over.

I have read that many parents are completely thrilled at what they see when they start chelation on their autistic children, but still didn't think I would be this excited. I have reminded to try to temper my expectations a bit in case he does not continue to improve this dramatically, or in case he has a set back, but right now it is hard not to get my hopes up that this is a sign that he might fully recover.

Praise God for the blessing that He brought us this week.

September 16, 2004

Chelation - day three

Today Chan made a noticeable leap in verbalization and eye contact. All kinds of eye contact with me today, happy smiley and even flirty.

He was playing a video game that shows objects and then tells what color they are. Scott and I were watching tv and I saw him out of the corner of my eye really, out of his chair, wiggling around and babbling, and just thought he was being silly, but when I started paying attention, I realized that he was looking at both of us and saying, "per per", "per per", I looked at the screen and there was a purple cup.

He got out of his chair to get our attention to tell us it was purple!

A few minutes later both boys were fighting over the computer and pulling on dad and he was so busy trying to get the game back up so they would calm down, that he didn't even see Chandler. He was pulling on Scott's shirt, and crying with this look of desperation on his face of a normal child trying to get his dad to look at him, all the while saying, "da da, da da". Honest to God he was desperate for his dad to make eye contact with him. I have never seen that expression on his face before. I was totally surprised. Usually he would be that upset but looking at the thing he wanted fixed (which is what Scott was looking at). It was the difference between, "Daddy fix that", and "Daddy look at me".

I kept telling Scott to look down, but both boys were so loud he didn't hear me and Scott didn't see it at all.

September 14, 2004

Chelation - for real this time

So we finally got the death flu out of the way and are back on course. I started Chandler on his first round of DMSA yesterday. He will be on the meds for 5 days at a time with breaks in between to give his body a chance to process all the junk out.

Yesterday I didn't see anything new, but this morning he seems a bit different. He was dancing with Ernie and Burt this morning, copying them while they were doing their exercises. I have only seen him do that once before.

He came to get me to give him something more to eat after breakfast, and the usual routine is he comes to me in my chair, pulls on me and whines, say in place and encourage him to say "up", he starts crying and pulling harder, and either he eventually says "up" or I give in. Just now he came over, grabbed my hand looked me in the eye and just said "up". So we walked to the kitchen and as soon as he got to the gate he said, "apple". It was a more smooth transaction than normal. This, by the way, is the third day in a week that he has asked for an apple.

He just seems happy today. Not silly or laughing, just in a good mood.

September 11, 2004

Chelation - sort of

I started Chandler on DMSA, but it was a false start as the next day I got sick, handed the care of the boys off to daddy and went to bed for two days. He was not really up on what I was doing and frankly I was on to much Ny-quill to care, so Chan only got about a day and a half on it.

Something cool did happen though. Chandler was in the play room watching a vocabulary video, one of the words of the video being "apple". He came running out of the playroom and pulled me to the kitchen, looked at the apples and said, "apple". He has never asked for a specific food before. If you hold up a banana he will name it for you, but he has never asked for one. He ate the apple down and then dragged me to the kitchen and did it again.

I gotta go buy more apples.

September 7, 2004

Nystatin after two weeks

So it was good, then bad, then good again and now blah.

He responded pretty well for the first 5 days or so, coping with things better, not getting frustrated very easily, more eye contact with mommy. Then things took and a turn and he was back to where we started. I called the doc and he said to make sure he was not getting any sugar at all, so I went to the strictly organic baby food (only veggies) and water to drink. I even took him off his liquid vitamins because there was a bit of sugar in them. And he got better again. I found out that he had been successfully sneaking his brother's juice, so poor Web is now only drinking water in case he leaves it lying around.

He perked back up again for a few days. Then Web got sick. Then Chan got sick. Then Chan got a hold of his brother's breakfast while mom and dad were distracted and he got two pieces of toast. Now everyone is walking around the house whining and crying. Including mommy.

I am hoping that we can get these boys better, then get all the gluten out of Chandler's system, make sure the yeast is down, then start chelation.

You know when you are trying to run a marathon and some jerk runs out of the crowd and knocks you down? That sucks. I feel like that now.

I cry a lot.