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 14, 2004
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.
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.
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.
August 26, 2004
Nystatin - Day 5
So some really cool stuff happened yesterday. Jennifer, Chandler's floortime therapist, was really happy after their session in the morning as he was doing some appropriate play. He was taking people figures and putting them in the swings and on the benches, and taking turns with her better than he had before on the interactive games they were playing. She reported that he didn't get frustrated or protest like usual when something didn't go his way. I am definitely seeing that too.
This morning when she got here, she said, "Chandler, let's go to the playroom", and he did! He ran straight in, even passing the TV, which was on, with out a glance.
He did that for me last night too. We were playing in the play room and I said, "ok Chandler, time for bed, let's go to the bedroom, and he ran straight in! First time in his life.
So, so proud of my boy.
Julia, his OT, says that his eye contact with her as not been as good in the last few weeks, including yesterday. I choose to believe that there are just to many cool things in the OT room that distract him. But then again, I also like to think that his autism is just a "phase" and he will snap out of it any day now. I love the smell of denial in the morning.
This morning when she got here, she said, "Chandler, let's go to the playroom", and he did! He ran straight in, even passing the TV, which was on, with out a glance.
He did that for me last night too. We were playing in the play room and I said, "ok Chandler, time for bed, let's go to the bedroom, and he ran straight in! First time in his life.
So, so proud of my boy.
Julia, his OT, says that his eye contact with her as not been as good in the last few weeks, including yesterday. I choose to believe that there are just to many cool things in the OT room that distract him. But then again, I also like to think that his autism is just a "phase" and he will snap out of it any day now. I love the smell of denial in the morning.
August 24, 2004
ugh... the whining...
So forget what I said about him having a good day yesterday morning. He spent the rest of the day whining. I forgot that there is that die-off effect. He wasn't horrible, just not fun.
And the un-funnist thing about yesterday? I heard a foreign sound in the kitchen and when I went in to see what was going on. I found that Chandler had climbed up to the counter and onto the stove. He was sitting on a gas burner trying to turn the knobs. I had a complete heart attack. My brother in law came over immediately with a temp barrier to the kitchen and we will be constructing a permanent one.
And the un-funnist thing about yesterday? I heard a foreign sound in the kitchen and when I went in to see what was going on. I found that Chandler had climbed up to the counter and onto the stove. He was sitting on a gas burner trying to turn the knobs. I had a complete heart attack. My brother in law came over immediately with a temp barrier to the kitchen and we will be constructing a permanent one.
August 23, 2004
Nystatin
As you may or may not know, it is believed that many autistic children have yeast overgrowth in their digestive track which exacerbates their autistic behavior by giving off toxins in the body, and deteriorating the lining in their GI track, allowing substances that are not properly broken down to cross into the blood stream. Once all these tasty morsels are in the body, they behave like morphine and LSD. If you did not know this, and are charged with the care of an autistic person, get reading. Also buy this.
So he started on Nystatin two days ago. Yesterday he had a good day, said "help" for the first time when he wanted some wheels put back on his lego car, and today is pretty good, but I have not really seen any appreciable difference yet. Some parents report results with in days, I guess for some it takes months. We shall see.
I recently read that Dr. Jacquelyn McCandless, who knows about these things, says that she stopped using Nystatin with her young patients, because Diflucan worked much better in children. If this does not help him out, I will probably ask our doc to switch.
So he started on Nystatin two days ago. Yesterday he had a good day, said "help" for the first time when he wanted some wheels put back on his lego car, and today is pretty good, but I have not really seen any appreciable difference yet. Some parents report results with in days, I guess for some it takes months. We shall see.
I recently read that Dr. Jacquelyn McCandless, who knows about these things, says that she stopped using Nystatin with her young patients, because Diflucan worked much better in children. If this does not help him out, I will probably ask our doc to switch.
August 19, 2004
Day Thirty - The Review
So today we finished Chandler's last treatment, and today he called La La and Po by their given names.
So the final review on the Sensory Learning Center is that it was a big help to Chandler and well worth the time and money invested. By no means is it a cure for autism, but it has made life a lot better for Chandler and for the rest of the family.
Chandler is a happier little boy, he takes direction most of the time where as he almost never responded before, his speech has improved and he babbles much more, he is calmer and more compliant (I can get him dressed and change his diapers with out a fight now), he is more alert and taking in much more of the world, his sensory symptoms have been dramatically decreased and in some cases gone completely (no more flapping, he answers to his name about half the time, and his eye contact has improved dramatically.
I want to be clear that it has not made him "all better". He still has tantrums, but now they are like a tenth of the intensity and duration as before. He still likes to take off running in random directions when we are in public, but three out of four times now when I yell "stop", he does. He still likes to do the things he is not allowed to do, like climb up on the kitchen counter, but now it is obvious that he KNOWS that he is not allowed to do them, and acts guilty when he is caught, where as before he just kept right on doing things seemingly oblivious to our wishes.
This just seems to have lifted a large veil from him. He is happier and interacts with us more. He is just more present. I am really grateful that we found this program and took the risk.
From what I understand, the changes that Chandler has made are not unusual for the program, but are perhaps on the higher end of typical. I have not heard any parents give it a bad review, but I know that, as with all treatments for autistic kids, some responses are much better than others. I hope that keeping this blog is helpful to parents who are trying to figure out if the program is for them.
I also hear that some parents report continued improvements in their children up to three and four months after the program is over. I certainly hope that is the case with Chandler, but I won't be able to report anything objectively as we are jumping right into another treatment from here.
Next up Nystatin....
UPDATE:
Saw this article today and thought I would pass it along.
So the final review on the Sensory Learning Center is that it was a big help to Chandler and well worth the time and money invested. By no means is it a cure for autism, but it has made life a lot better for Chandler and for the rest of the family.
Chandler is a happier little boy, he takes direction most of the time where as he almost never responded before, his speech has improved and he babbles much more, he is calmer and more compliant (I can get him dressed and change his diapers with out a fight now), he is more alert and taking in much more of the world, his sensory symptoms have been dramatically decreased and in some cases gone completely (no more flapping, he answers to his name about half the time, and his eye contact has improved dramatically.
I want to be clear that it has not made him "all better". He still has tantrums, but now they are like a tenth of the intensity and duration as before. He still likes to take off running in random directions when we are in public, but three out of four times now when I yell "stop", he does. He still likes to do the things he is not allowed to do, like climb up on the kitchen counter, but now it is obvious that he KNOWS that he is not allowed to do them, and acts guilty when he is caught, where as before he just kept right on doing things seemingly oblivious to our wishes.
This just seems to have lifted a large veil from him. He is happier and interacts with us more. He is just more present. I am really grateful that we found this program and took the risk.
From what I understand, the changes that Chandler has made are not unusual for the program, but are perhaps on the higher end of typical. I have not heard any parents give it a bad review, but I know that, as with all treatments for autistic kids, some responses are much better than others. I hope that keeping this blog is helpful to parents who are trying to figure out if the program is for them.
I also hear that some parents report continued improvements in their children up to three and four months after the program is over. I certainly hope that is the case with Chandler, but I won't be able to report anything objectively as we are jumping right into another treatment from here.
Next up Nystatin....
UPDATE:
Saw this article today and thought I would pass it along.
August 16, 2004
Day Twenty Eight
Something was hinky in my browser and I could not get into the site for a few days, sorry.
Here is what is going on with my boy.
Two days ago, for the first time, he said his name. We were looking in the mirror and I was, for the millionth time, trying to get him to answer the big questions, "Whose that"? and he said, "Chandler". My boy said his name.
His eye contact and language is getting better. Today he added "Tri" for triangle to the shapes he can name (circle, square up until now), and this week he said his first color. Purple. This also marked the first time he has combined words in an original way. We were looking at the magenta light during one of his treatments, and he put his hand on it and said, "purple light". Up until now we have always called it "light" and had not ever referred to its color.
He is also saying DADDY really clearly now. We have suspected that he was saying daddy many times, but he was not really using it in a context or saying it clearly enough to make us sure that he was really saying daddy, but now we know.
Two of the coolest things for me in the past few days is the interaction we had a few nights ago. Chandler woke up in the middle of the night, which he NEVER does, so we gave him another light treatment. Well afterward he was completely wired and would not get back in bed and woke his brother up. So at 3am they were ready to party. I tried to just leave them in the room, but Chandler was wailing for me, so I came back to check on him, and each time I tried to leave, he got really upset. He usually is not that adamant about me staying in their room and before going to the center he could not care less if I was in the room. So I got in bed with him, and he put his head down on the pillow facing me, and we just gazed at each other and smiled. He just lay there looking at me in that loving way that kids do when they are so excited that mommy is laying in bed with them. Webster and I do that all the time, just lay on the pillow and smile and talk, and I have often thought about how sad it makes me that I might never have those moments with Chandler. And then God gave me one. It was really beautiful.
After a few minutes he got antsy and stood up on the bed and started playing with a toy. I said, "ok... if you are all done with me, mommy's going bye-bye", because I really was exhausted, and he grabbed my hand and pulled me back on the bed and lay back down on the pillow looking at me and smiling. This happened two or three more times.
Web was getting a bit jealous and wanted me to lay down with him, so when Chan got distracted with a toy again, I got up and went over and lay down with Webster. After about three minutes, apparently Chandler began to feel left out because he went to the foot of the bed and crawled up in between us, then sat down and looked at both of us as if to say, "hey guys, what are we talking about?". He was really making long eye contact with Web, more than he had ever done before, so I encouraged Web to talk to him and touch him. Chan was actually interested in Web and; looking him in the eye and listening to him. That went on for two or three minutes and then he went his way.
Here is what is going on with my boy.
Two days ago, for the first time, he said his name. We were looking in the mirror and I was, for the millionth time, trying to get him to answer the big questions, "Whose that"? and he said, "Chandler". My boy said his name.
His eye contact and language is getting better. Today he added "Tri" for triangle to the shapes he can name (circle, square up until now), and this week he said his first color. Purple. This also marked the first time he has combined words in an original way. We were looking at the magenta light during one of his treatments, and he put his hand on it and said, "purple light". Up until now we have always called it "light" and had not ever referred to its color.
He is also saying DADDY really clearly now. We have suspected that he was saying daddy many times, but he was not really using it in a context or saying it clearly enough to make us sure that he was really saying daddy, but now we know.
Two of the coolest things for me in the past few days is the interaction we had a few nights ago. Chandler woke up in the middle of the night, which he NEVER does, so we gave him another light treatment. Well afterward he was completely wired and would not get back in bed and woke his brother up. So at 3am they were ready to party. I tried to just leave them in the room, but Chandler was wailing for me, so I came back to check on him, and each time I tried to leave, he got really upset. He usually is not that adamant about me staying in their room and before going to the center he could not care less if I was in the room. So I got in bed with him, and he put his head down on the pillow facing me, and we just gazed at each other and smiled. He just lay there looking at me in that loving way that kids do when they are so excited that mommy is laying in bed with them. Webster and I do that all the time, just lay on the pillow and smile and talk, and I have often thought about how sad it makes me that I might never have those moments with Chandler. And then God gave me one. It was really beautiful.
After a few minutes he got antsy and stood up on the bed and started playing with a toy. I said, "ok... if you are all done with me, mommy's going bye-bye", because I really was exhausted, and he grabbed my hand and pulled me back on the bed and lay back down on the pillow looking at me and smiling. This happened two or three more times.
Web was getting a bit jealous and wanted me to lay down with him, so when Chan got distracted with a toy again, I got up and went over and lay down with Webster. After about three minutes, apparently Chandler began to feel left out because he went to the foot of the bed and crawled up in between us, then sat down and looked at both of us as if to say, "hey guys, what are we talking about?". He was really making long eye contact with Web, more than he had ever done before, so I encouraged Web to talk to him and touch him. Chan was actually interested in Web and; looking him in the eye and listening to him. That went on for two or three minutes and then he went his way.
August 11, 2004
Day Twenty Two
So now we are having three sessions a day because Chan wants to. Today he wanted to do it four times, but I am afraid that he will get burned out. Silly boy.
He is just so silly.
He is just so silly.
August 9, 2004
Day Twenty One
So we were really busy this weekend and I didn't have time to post.
Took Chandler to his occupational therapist today and she was excited about all the changes he had made. They have a huge ball pit that he hates going in. He was stiff an anxious and just wanted out. Today he went in on his own all smiles and laughter, giggled when he when she threw him around and even laughed when she burred him completely! He got in a little tub of beans and instead of just tolerating it, was thrilled and silly! She took him out of the little tub and brought him into the big sandbox full of beans so that he could really roll around in them and boy did he. It was great to see the contrast in him from before.
On the downside, today was the first time in three weeks he would not let me tolerate me changing his diaper. It could just be because he was pissed at me because I made him stop playing in the water outside and come in the house. Man I hope so because it was an ugly flashback to "before" and I never wanna see that again. Scott changed his diaper before bed and he was as sweet as pie. Probably just really annoyed with me.
Took Chandler to his occupational therapist today and she was excited about all the changes he had made. They have a huge ball pit that he hates going in. He was stiff an anxious and just wanted out. Today he went in on his own all smiles and laughter, giggled when he when she threw him around and even laughed when she burred him completely! He got in a little tub of beans and instead of just tolerating it, was thrilled and silly! She took him out of the little tub and brought him into the big sandbox full of beans so that he could really roll around in them and boy did he. It was great to see the contrast in him from before.
On the downside, today was the first time in three weeks he would not let me tolerate me changing his diaper. It could just be because he was pissed at me because I made him stop playing in the water outside and come in the house. Man I hope so because it was an ugly flashback to "before" and I never wanna see that again. Scott changed his diaper before bed and he was as sweet as pie. Probably just really annoyed with me.
August 6, 2004
Day Eighteen
Chandler is doing more cool new stuff. Today with his floortime therapist, he grabbed a toy away from her and said, "mine". She was not sure that she heard him right so she took it back and he did it again.
Yesterday daddy let them run around naked in the back yard and play in the kiddy pool. Web stopped to relieve himself on a shrub which of course daddy thinks is cool (sigh... dads...). Two minutes later Chandler wandered over to the shrub and peed on the same spot, then he turned to smile at daddy as if to say, "hey look what I did".
I never thought I would be celebrating my son peeing in the back yard or being selfish with his toys, but is funny what you celebrate with an ASD child.
Yesterday daddy let them run around naked in the back yard and play in the kiddy pool. Web stopped to relieve himself on a shrub which of course daddy thinks is cool (sigh... dads...). Two minutes later Chandler wandered over to the shrub and peed on the same spot, then he turned to smile at daddy as if to say, "hey look what I did".
I never thought I would be celebrating my son peeing in the back yard or being selfish with his toys, but is funny what you celebrate with an ASD child.
August 5, 2004
Day Seventeen
It was the best of times, it was the worst of times.
Yesterday started off great with Chandler feeding himself with a spoon. Then he fed himself half of his brothers peanut butter and jelly sandwich and he spent the rest of the day riding the gluten train! He just walked around the house crying until bed time. He is a bit better today, but not quite back to himself. Guess that confirms that the GFCF diet is working.
The one other cool thing that happened was that just before bed time I was sitting in the dining room talking with a friend and he came and got me. He took my hand and led me back into the bedroom where we do the sessions, climbed into the chair, and tried to turn the music on! I guess he had felt so bad all day he was craving a little peace.
He has done that three times today, and after the first time I had moved his car seat into the car so I could take them both to the store. He just climbed into the chair and sat the whole time. I just give him a drink and a bowl of snacks and he is good to go.
Today his floortime therapist came and she commented that he seemed calmer, more aware of what was going on around him, and was babbling much more. Go Chan!
Yesterday started off great with Chandler feeding himself with a spoon. Then he fed himself half of his brothers peanut butter and jelly sandwich and he spent the rest of the day riding the gluten train! He just walked around the house crying until bed time. He is a bit better today, but not quite back to himself. Guess that confirms that the GFCF diet is working.
The one other cool thing that happened was that just before bed time I was sitting in the dining room talking with a friend and he came and got me. He took my hand and led me back into the bedroom where we do the sessions, climbed into the chair, and tried to turn the music on! I guess he had felt so bad all day he was craving a little peace.
He has done that three times today, and after the first time I had moved his car seat into the car so I could take them both to the store. He just climbed into the chair and sat the whole time. I just give him a drink and a bowl of snacks and he is good to go.
Today his floortime therapist came and she commented that he seemed calmer, more aware of what was going on around him, and was babbling much more. Go Chan!
August 4, 2004
Day Sixteen
HOLY CRAP, HE IS FEEDING HIMSELF! WITH A SPOON EVEN!
I sat down to feed him his beloved Gerber bananas and berries and before I could get the spoon in his mouth, he took it away from me and did it himself. Then he just kept going. He did this once before, but it was more like playing, dipping the spoon in and then licking it for 5 minutes or so. He didn't actually get much food in him. This time he has finished almost the whole thing just since I sat down at the computer.
Mommy is happy.
I sat down to feed him his beloved Gerber bananas and berries and before I could get the spoon in his mouth, he took it away from me and did it himself. Then he just kept going. He did this once before, but it was more like playing, dipping the spoon in and then licking it for 5 minutes or so. He didn't actually get much food in him. This time he has finished almost the whole thing just since I sat down at the computer.
Mommy is happy.
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