ebarrelracing.com forum
General Category => Ben's Diary => Topic started by: Tamet Gould on October 26, 2011, 02:34:33 PM
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Been over a yr since I updated so thought I better fill yall in.
It has been an up and down roller coaster ride this yr. Benjamin was having all sorts of trouble the first half of the yr and we had to cancel some therapies due to him having trouble. BUT, we went to see Dr S during the summer and did some more tests and found a HUGE part of the problem. Dr S said that he was very frustrated with Benjamin because a huge number of his children he was able to help A LOT (dont think he realized we considered everything he had done as a LOT!), some not quit as much as the mass and then there was the 5% that he couldnt get off him mind because they werent coming around like he wants them to. Of course he put Benjamin in the 5% that hadnt recovered as much as he liked.
Dr S is always looking, researching, developing supplements, etc etc etc. I had begun to suspect there was some amino acid/enzyme/protein problems now and they were raising their disfunctional head. Of course he was already going down that route too and had been watching his kids closely and begun to see some tell tell signs that made him question those 3 culprits also. He had already designed some supps to meet the needs he was seeing since we were there earlier in the yr so he sent us home with those and wanted tests run to confirm what he thought. Those supps started helping immediately (yahoooooooo)! Most of what we were doing was required for what Dr S suspected so all the other stuff stayed same. Now, 3 weeks later test results come back, Benjamin has "acquired prophyria". It is a group of inherited or acquired disorders of certain enzymes in the heme bio-synthetic pathway (also called porphyrin pathway) It manifests with either neurological complications or skin problems (or occasionally both), belly aches etc etc etc. Some of you might know it as the King George disease. All of them describe Benjamin as some point and time.
Of course now Ive bought a Bio Chemistry book and am learning biochemistry, Dr S told me a long time ago, I might as well just become a biochemist. :D Told him I didnt have the time, but time has proved me wrong. ;D
Anyway, being that it is acquired rather than inherited Dr S suggests it is probably enviromental, in other words heavy metal poisoning. So probably will be some heavy duty chelation in our future. Dr S said we would talk about it in Dec when we go back down. Meanwhile, Benjamin continues to get better.............
I enrolled him in public school this fall and HE LOVES IT! He has already been to 2 pep rallys, and just started riding the bus home last week (remember baby steps), I like to have not been able to get him OFF the bus he was having so much fun. :D The school still has trouble moving him around but I am slowly teaching them and they dont seem to have to much problem with me being up there when I want to be or need to be. ;D I ending up rewriting his IEP cause I wasnt happy with theirs. They said ok and we are working on it now. I will start going up to the school a couple times a week and have lunch with him, we will go to the lunch room and eat. Right now he eats in Sp Ed classroom, cause they cant move him real well yet. They got him in the lunchroom at first of semester then couldnt get him to leave. It was kinda funny to see the principle, vice principle and teacher all sitting in a big empty lunch room with Ben because they couldnt get him to move. Anyway enough funny. He is doing great and I will be pushing them to do more and more with him. He is enjoying himself immensely so I want him to do as much as he will and can. He has a fire drill they will be doing tomorrow morning so I will go up there and walk him thru it, they left him in the room last time and I told them that wouldnt work. They have to be able to move him, safety pure and simple.
Now I have added an herbal mixture and HCL (Betaine) to his supps and he took another huge leap! Aggressive behaviors took a big dive, and more reasoning replaced it. LOVE THAT!
They had pictures yesterday and when we walked into the auditorium (it was dark except for the podium area), he grabbed the wall and screamed. I made him more on down to the front and sit on the floor and just talked to him. Explained they were just taking pictures and he began to believe me when the flashes started going off. Within a few mins he had stopped screaming, drilling and rocking and was hugging me and playing. He comes around much easier now days. We are loving it and so is he. I will keep yall posted.
Just so you know;
1st week - by friday he was walking to his classroom in front of me.
2nd week - leaving me behind by a door or two going to his room, by friday was hanging up his own backpack, and getting it and putting it on when I picked him up. He is also putting his back pack on the sink when he gets home all by himself.
3rd week - at home, he has already settled into a morning routine before going to school. He isnt happy when Sat and Sun rolls around now. He is hanging his mower key up when he finishes riding and gets it when he walks out the door. Told him everybody keeps their keys in a certain spot (well most everybody) ;D He went to his first pep rally, did good.
4th week - starting to work on him saying hi to people in school (still working on that)
5th week - Rewrote IEP
6th week - Ben is not only putting up his backpack when he walks into his classroom but he is starting to carry his lunch to refrig and put it in with assistance. Aggression took another dive.
7th week - Ben putting up his backpack, putting up his lunch without assistance, started riding bus home, I went up there the first 2 days to help them move him to bus. Went to his 2nd pep rally, he did great! Actually drummed on his chest when the drummers came thru, when they played a couple of songs he started dancing in his chair, that was hillarous!
8th week - Ben is now riding the bus home in the afternoons, they are able to get him up and to the bus without to many issues.
We will be starting on the lunchroom stuff next week. I expect he will be eating in the lunchroom with everyone else within the next couple of weeks ;D
Then I want him to be able to go to a regular class once a day without disturbing everyone. Its exciting.....
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It is really funny sometimes Ben acts up and Tamet threatens not to let go to school if doesn't straighten up. The funny part is he will straighten up. Makes me laugh
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Well, Bob, what does Tamet threaten you with? ROFLMAO
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All of this is just absolutely wonderful!! I could see that he was getting better the couple of times I was over there this summer. He actually made eye contact with me and smiled at me and seemed pleased when I patted him on the back. He's so sweet. But I had no idea how far he has actually come. Onward and upward, Ben!
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This is so great! You go, Ben!!!! Makes me smile just read all the progress. (For everyone!)
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All of this is just absolutely wonderful!! I could see that he was getting better the couple of times I was over there this summer. He actually made eye contact with me and smiled at me and seemed pleased when I patted him on the back. He's so sweet. But I had no idea how far he has actually come. Onward and upward, Ben!
He can be sweet yes, but you always have to keep an eye out for Dr Jekyl.... :D
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all of this is great news! Glad to hear Ben is doing so well.
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UPDATE 11/2/11
Ben walked to lunch room today, ate with all the other kids and went back to his classroom WITHOUT ME BEING THERE! Yahooooooo, one giant step for BENJAMIN!!!!!!!!!!!!
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Benjamin has been going to eat in the lunchroom everyday since the 2nd no problems at all!!!!! Now we have to try and regular class and see if he can handle that.
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Benjamins did just outstanding work in 2011. superb.
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Benjamin has been going to eat in the lunchroom everyday since the 2nd no problems at all!!!!! Now we have to try and regular class and see if he can handle that.
Its not much difficult for Benjamin
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spoke with the teacher yesterday and we will start doing the 1 regular class after xmas break. Ben is doing so well, we are working on two word sentences at home, and he will be starting back with his speech therapy at home next week.