Author Topic: October Update  (Read 2959 times)

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Offline Tamet Gould

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October Update
« on: October 14, 2007, 08:17:45 AM »
Well Ive put this off and put this off because it has been such a roller coaster ride with Ben for the last 6 weeks. 

The first week of Sept Ben was doing great then he became very violent towards me.   Well, we had our appoint with Dr Stewart the first week and he knew right away what was wrong with Ben as soon as we walked in the door.   He told us Ben was eaten up with yeast and that was why he was acting the way he was.   So, he sent us home with a script for antifungal and that helped.   But, didnt quit turn him around.   So, he prescribed another round of it.   Things got a little better but he said "Lets put him on something even more powerful and see if we cant knock that resistant strain out."  So, we did and he got even better, no screaming, or being violent to me and he was finally acting like he was a little more comfortable in his own skin.   I cant even image how he felt, but it must have been miserable. 

We finally figured out why he was acting the way he was in the truck.   One day on the way home from Plano he was screaming, I was in there by myself with him, and it just came into my head, "What if he is getting car sick".   Well, low and behold, we put him in the front seat the next trip we took and he was just fine.   He rides shootgun all the time now and is just hunkey dorey, not a peep out of him.  So, life has been a little more comfortable since we figured out that.   

Now, here this past week we had to reduce our Plano trips down to once a week again so that we can at least keep going longer.   Hopefully, he will keep progressing with just once a week.  We have really been working on "waiting".   He isnt much of a 'waiter', so we are butting heads on that issue, and when he doesnt get his way he acts just like a 2 yr old and does SIBs or pulls his pants down.   Joseph never did things like that so when Ben started it, I like to have fell over.  Its funny and its frustrating.   The funny part will be easy for you to understand but the frustrating part, let me explain.   You cant spank Ben, does no good, tried it, many different times in the last 12 yrs.   Does not work with him.   Now, what does is completely ignoring him.   The reason being that he does things to get attention (not sure of his reasoning on that because no body else in our house gets that much attention  :ROFL2: )

So, when he requests to do something and I tell him lets wait, he immediately yanks his shorts down.   So, everybody in his vacinity immediately turns their back on him and ignores him - completely!!!!!!  no eye contact, no speaking to him etc.   When they told us to do that, I thought, yeah right, like that is going to work puuuuhhhhh.....   Well, was I wrong and they were right.   I had no idea how important it is to him that we provide him with social mediation (attention).   Now, mind you at no time have any of us pulled our pants down in frustration in front of him, so the smart fart just came up with the idea, cause he sure as hell didnt get it from me.   :ROFL2: :ROFL2:

Anyway, when he gets angry with us because we arent doing or allowing him to do what he wants to, he just yanks his shorts down.   We all immediately turn our backs on him and within 1 minute he will pull them right back up.   I would never have believed it if I hadnt witnessed it myself numerous times.  Needless to say, when we go into public I put something on him I am POSITIVELY positive he cant get down by himself.   roflmao

So onward and upward.   Im not sure you realize this but even with all this controversy we are very excited because 2 yrs ago, Ben wasnt even aware enough of his world to really care what you or anyone else did and now, we his awareness and development is coming all these natural development stages.   Its just not as fun with a 2 yr old mind in a 12 yr old body.   (:0)))

The later part of this week he has been picking at the skin on his fingers and making them bleed and not wanting to go outside and heck he didnt eat anything Fri and he only ate once yesterday (sat) so I think we are looking at a fungal issue again, so I will be calling Dr Stewart Monday and see if we can get a test done and get the specific strain we are fighting and help him get over it.   

Now, for the really exciting news.   I decided last month it was time to try and get his gastro problems solved again, I gave up in 2003 because the only Drs. I could find were so stupid all they could tell me was, "He's autistic and all autistic kids have that problem and there is nothing we can do".   Well you know I might have bought that but they never did anything to see what was wrong!!!   <IMSOMAD>   We saw 3 different Gastros that yr and none of them except for the last one would even do any testing.   One just stuck her finger in his anus and said well that looks fine but Autistic kids just have these problems.  What a dumbass she was.   I wouldnt take my dieing dog to her.    Ok, getting off on a rant so let me get back to the subject at hand.   

Dr Stewart called in a referral to Scott & White in Temple (they are one of only 4 hospital in the state that do pill cam).   I have kept up with what they are doing at Thoughtfulhouse in Austin and that is what they are using a lot.   So, I quit naturally had to try and find somewhere that they are doing it in Texas that takes Medicaid.   Thoughtfulhouse doesnt take Medicaid and it is about $7000 to get it done there and well just dont have the money for that.  Anyway......, Dr Stewart called it in and I never heard anything back from Scott & White so I called them and they had an appointment for Ben with a new Dr there called Dr Pohl.   At first, I was kinda pissed because we had seen another one there and they didnt send me back to him.   Then I decided, maybe that is a blessing, and besides when the other Dr saw it was me he probably said, I dont EVEN want to deal with that woman!!!!!!   :ROFL2: :ROFL2:.

Well, we went and saw Dr Pohl last tues and I am very impressed.   He has kept up on his reading and is up on the latest findings and research and is following what Dr Wakefield and his Assoc are doing in Austin.   :TIGGER: :TIGGER: :TIGGER: :TIGGER:  I thought FINALLY SOMEONE IN THE MEDICAL PROFESSION THAT IS STILL STUDYING besides Dr Stewart that is.   He sees numerous Autistic patients.   Anyway, we talked about Ben and some of the things that we had learned to do to coup and he wanted to know what we were using (wanted the website and everything - he said if it worked he might could refer it to some of his other clients).   Okay, by now you can guess I AM VERY EXCITED  rofl.  He said all I can offer you is supplements and laxatives and stuff like that to help, so how else can I help you.   So, I said I know Scott & White has the pill cam and I would like for you to do that and lets see what is going on.   He said that the pill cam was good, it gave nice pictures but that was all you would get out of it.  So, if nothing showed up there would be no way (during that pill cam procedure) to find anything else.   He said I would like to do a upper endoscopy and then biopsy his small intestine, I think we could get more from that.   Because if we cant 'see' anything wrong at least the biopsy we tell us if there is any intestinal barrier inflamation.  I like to have fell out of my chair..    roflmao
I thought to myself, God, Thank You for this blessing.   I told him, (Dr Pohl) that I was game (God already knows I am  rofl ).  But, that I thought you couldnt get all the way into the small intestine with an upper endoscope and he said, "Yes you can".  He said, "Would 3 weeks from now be okay?"  He doesnt realize that I was doing this in my head  :TIGGER: :TIGGER: :TIGGER: :TIGGER: <ROCKON> <ROCKON> <ROCKON> :()& :()& :()& :TIGGER: :TIGGER: :TIGGER:

Now, what triggered me to do this was Ben being an under meythlator (low homecystine levels) and then just 2 weeks ago having some blood work done and he came back Vit deficienct, not bad mind you, but still slightly deficient.   There is no reason whatsoever for this child to be vit deficient.   He not only gets regular vits but he also gets the already meythlated B12, B6 and folic acid.   These are so important because the meythaltion cycle is imperative to the chemicals used in brain development or thought process.   Plus he gets fresh juice daily.   If he is still showing deficencies with that then his small intestine isnt working.   Thank God, I found someone in the medical profession that agrees.   

Now, of course we talked about a lot of other things and we were giving him a hard time because he was wanting to know what we were using to help Ben poop.   Primarly because I told him dont bother telling me about Miralax because Ben spent more time in the emergency room on that stuff 2x's a day then we did at home.   He just laughed and that was when he asked about what we were using.  I told him and Kelly asked him why do you want to know?  He said, "If it works, I might have other kids that it will help."  Kelly then asked him if that was why he was so skinny because he was using all these different laxatives all the time?   (Mind you, if a Dr cant handle us giving him a hard time he will never make it in his profession  :ROFL2: :ROFL2: )  He just laughed and said, "No, Im a runner thats why Im skinny."   :ROFL2: :ROFL2: rofl 

So, after all our talking he came over to look Ben over and Ben was studying him very hard, giving him the evil eye until he made his decision about what he thought of him.   Dr Pohl, looked in his throat, listened to his chest and then sat back and just started talking to Ben.  Ben looked at him for about a minute then grinned and put his foot up in Dr Pohl lap.   It was so funny.  He liked him!!!!!!  Dr Pohl just laughed and kept on talking to him.   Ben has only ever touched 2 other med professionals in the last 12yrs, his lady dentist, and Dr Stewart, so I have a lot of confidence in Bens' assesment of him, he is usually a really good judge of character.   Dr Pohl wanted an abdominal xray before we left because he said they had determined that 100% of Autistic children had gastro problems (If I wasnt already married to Bob I would have married Dr Pohl right there on the spot!!!   :ROFL2:)  and that a huge majority of them had impacted bowels (let me reiterate I would have married him immediately, either that or he must have been wearing wings from heaven because I thought I had died and already gone there). 

They will have to put him under for the endoscopy and Dr Pohl wanted to pull some blood also and double check to make sure that Ben wasnt showing positive for Chrohns disease.  I told him we had done the challenge and that he got VERY LITTLE wheat and if he got it at all it was from a sprouted grain.   So, he will be testing for that also again. 

Oh, forgot to tell you that he gave me his email so we could find out how the xrays turned out, because we didnt want to wait around for them.   I emailed him thursday and he emailed me back (okay did yall catch that, he emailed me back, I swear he was Godly sent  (:0))) ) and told me that Ben was constipated but not terribly bad and that he had air in his stomach which was another common thing they have begun to discover about autistic kids.   Okay, I will get off now, just had to share with yall our latest news.   So, continue to keep Ben in your prayers and keep Dr Pohl in your prayers that God will give him infinite wisdom when it comes to all these autistic kids that need medical professionals that keep up with the latest research. 

Most importantly, please pray that he can find what is wrong with this childs digestive system.   It is crucial to his ability to learn and stay healthy. 
« Last Edit: October 14, 2007, 08:23:10 AM by Tamet Gould »
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: October Update
« Reply #1 on: October 15, 2007, 12:27:31 PM »
Oh My ... How encouraging I see now why you are like this  :TIGGER:  :TIGGER:  :TIGGER:  :TIGGER:  :TIGGER:

Offline Tamet Gould

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Re: October Update
« Reply #2 on: October 15, 2007, 12:37:46 PM »
I know, its pretty bad when you want time to fly.   We had a rough weekend, Ben got up very lethargic today, Kelly convinced him to eat a bowl of soup with fresh vegs in them and he did, he is trying to go back to sleep now (we skipped going to Plano after the day we had yesterday  <(::)> )   So, Im thinking I am going to let him sleep if he will, that is the time the body heals itself.
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.