Author Topic: Late October Update  (Read 3602 times)

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Offline Tamet Gould

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Late October Update
« on: October 27, 2007, 10:09:50 AM »
Thought I would fill yall in on what has been going on in the last 2 weeks. 

We are getting Bens outburst under better control, or I should say he is.   We havent had any "pants yanking down" in a week.   We had a confrontation concerning coming out of the bathroom without his pants on not long after I posted my Oct update.   

Ben and I spent 6 hrs working this out.   He would come out of the bathroom without his underwear on and I would make him go back in and stand over his shoulder and tap him until he would put his pants on.   Then I got to thinking about how Dr Carbone did one of his clients (child) in the DVD set I have of his.   So, I decided instead of standing over him and telling him to constantly put his underwear on that I would just stand in the hallway and when he came out of the bathroom I would say, "Ben you dont have your underwear on, you have to have your underwear on to come out of the bathroom".   He would just scream bloody murder and look at me so  <IMSOMAD> and turn around and march back into the bathroom and scream more and come out again.   I would tell him again that he needed his underwear on before he came out of the bathroom.    He would go back in and scream some more, to the point of what we call in the Behavior therapy world a "extinction outburst", which is always a good sign, because it means you are fixing to get a change in behavior.  So, we did this for about 4 hrs and he finally came out of the bathroom with his underwear on.   I made a big deal out of it and said, "Hey you have your underwear on, lets go for a ride".   So, we went down the rode to visit my cousin and then we got to work on "waiting" there.   That is ususally when the pants yanking down had commensed in early oct, but it was a little hard to do that buckled up in the truck back seat.   So, he just screamed and we kept on talking, I explained to them what was going on and how we were handling it.   And, after about 20 mins he decided to settle down and asked me (signed and said) "Go", so I said okay, its time for us to go home.   We said our goodbys and headed home.

So, if you havent seen us much out with Ben lately its because he is developing along the lines of a 2 1/2 yr old now and being that he is in a nearly 13 yr old body, we are careful where we go. 

We had about 4 more run-ins concerning coming out of the bathroom over the last 2 weeks and each time the spells got a little bit shorter.   The last one only lasted 20 mins and then life went on.   

Now for some exciting behaviors; Ben has taken an interest in finger painting  :yes:.  He has never wanted to do anything like that!!!!!!   He is communicating to us all, more of what he wants.   He will come tell me that he wants me to sit with him on the couch.   He will come up to us and say he wants to go.   He is asking to go mow, he will ask you to turn on the lawn mower.   You have to realize we break down all activities so that he has more opportunity to ask us for something.  Think of all the things you do in a task.   For instance to go for a ride; get dressed, put your shoes on, open the door, unlock the truck, buckle up and then "go".   There are lots of opportunities for him to communicate to us what he wants.   And, he is doing more and more of it everyday.   So, let me go into the medical side of things now and tell you why he is doing more of it.

For the past few months I have been coming across stuff concerning genetics.   It would pop up here and there and catch my interest and I would think, "I am going to have to check into that".   Now, the fact that Ben is an undermeythlator has been leaping out at me several time this month and last month.   We had 2 blood tests done and then finally I contacted Dr Stewart about his behaviors and he said lets pull blood again.   I told them that I had Bens blood looked at under a Black microscope and he was still showing red blood cells infected with virus, as well as bacteria in his blood.   Yes, I know some or most doctors would say, "Thats just voodoo, and means nothing".   Well, I dont know, but if I use a microscope just like they do and I put some of Bens blood on slides and I look at them and I see misshaped red blood cells and cells that are infected with virus, "HELLLLLLLLLOOOOOOOOOOO".    Duh, something isnt right.   There was nothing added, I could see the man put the blood on the slides and then put them under the microscope and then I could see this stuff myself.   Im not stupid   <..>  But anyway, I wont get on my soapbox.   It just isnt right that Ben is on 2 antivirals as well as a bacterial med and he still has all this floating around!!!!!    Something just isnt right.   <DUMMY ME>   

Well the next day Mel, his massage therapist came over and told me I needed to call Beth (a lady I know who has a son not as involved as Ben but he is autistic), so I called her and guess what?   She had the genetic testing done that I had come across so we got to talking and I knew it was time for me to take another leap in all this.   I had been researching meythlation for some time on the internet the whole thing was very intimidating to me because it looked sooooooo complicated.   Im not a biochemist, nor a genetic specialist, but the more I research the more I am convinced that there is something to this that can help Ben.    In the meantime, I have ordered a book and started studying, and Dr Stewart got back Bens blood work.   Well, as I suspected, his ESB is high again, his homecystine levels are no different than they were 2 yrs ago (even though we have seen huge gains with the myethlated B12, B6 and Folate - Metanx) and he is showing Vit deficiency and his testostrone levels are VERY high, thats tied in with the viruses, and bacteria problem and being in puberty doesnt help.   So, I ordered the book, got it, have started studying it. 

Now, I talked Dr Stewart into giving him a B12 shot and then if we got good results I wanted to do it regularly.   So, Thur morning, bright and early, I took him to Hillsboro and Dr Baileys nurse gave him a shot of B12 per Dr Stewarts orders (Im sure Dr Bailey appreciates that, but he has to remember he told me he didnt want to have to learn anything about autism so I will just make him suffer because of that  >:D  He will have to deal with his ego himself, I just dont have time).   Diane, Dr Stewarts nurse told me to call her at the end of the day and let her know how things were.    Well, 15 mins after the shot, Ben was setting in the truck and it was so WEIRD, he got very quiet, just sat there, and slowly started blinking his eyes, that was what was weird, the way he was blinking them, had to be a dopamine response (wont get off in that though) and he just sat there and did that for about 5 mins.   It was like something just washed all over his body.   It was wild.   Then immediately he turned to me and smiled (his whole demeanor had changed, I can assure you I was getting very excited by then).  I just ordered some eggs for him, we were at Whataburger, and I ask him if he wanted his eggs, he looked at me and said, "eeeehhh, ggggggguuu, zzzzzzzz", I liked to have fell out of the truck!!!!!    :TIGGER: :TIGGER: :TIGGER:   We kept asking him to say it, and talking to him.   He was laughing and doing what we asked him to.   So, we went to Wal Mart and sat in the parking lot and desided we wanted a case, no make that 2 cases of B12 for Ben!!!!    roflmao   

I called Dr Stewarts office while we where setting in the Wal Mart parking lot and told them about what had happened about 15 mins after the shot, of course Connie was sceptical about it but I told her to convey the message anyway!   Diane called me back later that day and I told her I was very excited, I wanted to do this, so they gave me a script for 3 shots a week for 5 weeks.   I am having to have it compounded at a pharmacy in Ft Worth, because Dr Stewart wanted it to be meythlated B12 instead of cynocobalmin.  I go today and pick up the B12.    I will let yall know how it goes.   I am very excited about this, especially the more I learn about Genetic Bypass.    I wont go into great detail though, I probably bore yall to death with that.   Check out the link and that will give you an idea of what I am talking about.   

Meythlation is SO important.   It is used in EVERY aspect of our body and the really cool thing is they are starting to use nutrition to alter it.   From the book that I am reading we are doing a lot of the things we should, that is why he has been getting better,  but the actual genetic test would give us specifics as to which were turned off and on and the affects they were having and it would also tell me what specific nutrients to use to turn those on or jump start his meythlation cycle so that other things would do their job.   

Anyway, that is where we are today, Oct 27, 2007.   Check out the link and it will show you some things.  http://www.pbs.org/wgbh/nova/sciencenow/3411/02.html
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline melaself

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Re: Late October Update
« Reply #1 on: October 29, 2007, 06:43:39 AM »
What exciting news! These baby steps you are taking are great leaps and bounds for Ben.  :TIGGER:

Knowing what it's like to have a child who turns into a walking hormone, I just can't imagine what it must be like to have one who can't communicate how he feels or understand what is happening to him.

I'm so very sorry that your Dr. is so narrow minded that he doesn't want to be educated about a condition that is so common these days. Fortunately you have found one to help you and back you up when you need it.

I wish I was in the position to offer you more support. But, about all I can do is say "Keep on keepin' on" you are a great mother and you are doing all the right things for your children. I know that sometimes it doesn't seem like it, but God is smiling down on you.  (((((((HUGS))))))))

Offline Tamet Gould

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Re: Late October Update
« Reply #2 on: October 30, 2007, 08:01:08 AM »
Interesting turn of events; Ben has become HORRIBLY violent towards everyone.   He started getting pinchy Sat evening and even worse Sunday then I had to leave and go to my moms to carry her to see Dr Stewart.   So, I was gone Sunday afternoon and all day yesterday (Monday) and Bob and Kelly said first thing Mon morning when they were getting in the truck to go to Plano Ben grabbed a handful of Kellys hair and when Bob tried to help or rescue her then Ben grabbed a handful of his hair.  Im sure that was hilarous, both of them in the front seat with Ben having hold of them.   Well no, Im sure it wasnt funny for them but a big indicator that Ben is having some major issues.    :no:    They said that he did okay with Holly the first 1 1/2 but he and Ashley had a knock down drag out the last hr. 

When I got home last night at 9:30pm he started in on me.   Bob said that when he got home from therapy yesterday that he went to bed and slept from 2:30pm to 6:00pm.   He wouldnt eat and I told him to start pouring water down him and juice down him.   When I got home I went into his room and he was just laying in bed and started hitting at me even though I was standing in the doorway.   I went and layed down to talk to him and he just started attacking me and I told him I wouldnt stay in there with him acting that way.   At about 11:00 he came out of his room and wanted to sit on the couch with me and then just started pinching and hitting at me so I made him go back to his room.  I made him drink 4 more glasses of water and another cup of juice throughout the evening, before I went to bed at 12:30 this morning.     

Geeezzzzz, this will be an interesting week.    I will keep yall posted.
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline Pam Cantwell

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Re: Late October Update
« Reply #3 on: November 03, 2007, 09:13:04 AM »
Any test results back yet?
“When the government fears the people, you have liberty.  When the people fear the government, you have tyranny.”  ~Thomas Jefferson.

Offline Tamet Gould

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Re: Late October Update
« Reply #4 on: November 03, 2007, 12:32:17 PM »
Just snot in the stomach.   Biopsy wont be back for a week.   
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.