Re: Re: Update on Rob (27 yr old, Autism, PDD-NOS)

September 8, 2011

Did they have any pain in there gut from taking the Syntol? Both my daughter and I get severe pain, nausea and headache from any yeast enzyme.We tried syntol and a few others. Zirastop seems to be fine. I'm not sure if it means we really need it but one capsule puts me in bed for half a day.

Re: Update on Rob (27 yr old, Autism, PDD-NOS)

Rob had a +4 Clostridia - 12 caps of Syntol per day for 45 days, we tested a year later, it was gone. We still do 2-4 caps daily. Worked for Jimmy too. His was Klebsiella (I think..I will check.)

and thanks, yes, it's been good and inspiring...it's what keeps me going.

laura

>

> > **

> >

> > Yes, Rob has a job, and about to get more hours because he does a good job!

> > I'm wicked super proud.

> >

> > and yes, started art classes last week. Was like "when are you leaving

> > , because I want to get started." Is looking to also start at the YMCA

> > with some classes that sounded interesting to him. He is awesome in the

> > house and helping me, helps with the kids, helps with cleaning, cooking and

> > doing tasking (laundry, toys picked up, making lists for the grocery store).

> > I am not going to lie, I am sucking crap in the social dept, and really need

> > to figure that part out. Work is great, so is art classes, but he needs

> > friends.

> >

> > I took him out of his 'program' because (and this is going to sound awful)

> > - because it was beneath him. Bunny hats, popsicle stick structures for a 27

> > year old? I had asked about work or volunteer opportunities, and they

> > shuffled me away, so I said, screw this, I can do better (at least I hope!)

> > than this. Group home settings (ugh!) -- not what I want for my brother. I

> > know how awful I sound. But not to be obnoxious, it's with out a doubt

> > awful. I cried a lot after seeing what comes next. It's like your sent to

> > die. Your gratuitous hand shaker in game of life...it's what motivated me

> > and allowed me to be nazi like when I was recovering Jimmy. I was like "not

> > for my kid, not for my brother."

> >

> > He was in MA, NY and CT for a few months because my Dad had another stroke

> > (Stroke #3 this year, ugh), and wanted to hang with him. Dad was very proud

> > of Rob, and cried because they had a 'real' conversation. He tried to tell

> > me, but couldn't get past the emotional part. You know when you've done well

> > enough to impress my Dad who was never easily impressed. Dad bought Rob an

> > Ipad, a 32 inch LED TV and of course, asked if there was anything he needed.

> > I was like 'gee Dad, I'm trying to teach him the value of hard work and

> > earning money for things he wants.' Dad was like 'whatever, I'm old.'

> >

> > I got a lot of great feedback from people who have known Rob since birth,

> > all very positive, and excited about biomed (which they considered witch

> > craft and voodoo diets 2 years ago..) SO much so, that many have asked for

> > information and direction...tough nuts to crack. I still get the defenders

> > of the status quo, self righteous, and doubtful, but the results do speak

> > for themselves. We've got a ways to go, but it's really the difference of

> > night and day.

> >

> > I have said, I won't give up...I finally (FINALLY) found a thyroid doc for

> > Rob, very promising. VERY! So, I plan on working on that next. We get a

> > metals test, and IGg, Comprehensive stool analysis, and there are a few more

> > that I can't remember.

> >

> > Rob while in NY saw his best friend since he was 3. They did all sorts of

> > things, bowling, mini golf and went out to the movies and dinner.

> > was like "I can't believe this is Rob." Rob even ordered his own meal, gf/cf

> > the best he could. I was excited. He is starting to really get it. He even

> > is starting to really connect things, which he never has done well. Although

> > he is my brother, and not my child, I well up with excitement for the

> > possibilities. My parents had no clue, and were stuck in 'the system.' I am

> > hoping we can piece together a life worth living. Something he has control

> > over.

> >

> > BTW, also shaves daily. Now, some may think that's not a big deal, but Rob

> > only ever had to shave once a week, if that. This means things are starting

> > to work right! YEAH! Even a lower voice. gah!

> >

> > His speech is still somewhat marbled, but I am looking into ear acupuncture

> > using gold and silver pellets. (energy medicine...) - I am open to trying

> > some interesting stuff, which btw, has an 85% success rate. (I have been

> > reading about that recently...) The reason? When Rob was about 5, they chose

> > a handed-ness for him. Right handed. My parents had 7 children, all left

> > handed, except for Rob. (ALthough, Rob uses his left hand for a few

> > things)...anyway, I was reading that when a child uses the wrong hand, it

> > interferes with the transition of information. The kids can't retrieve the

> > information because it's blocked. Essentially, you have valuables in a safe,

> > and forgot the combo. This is supposed to set it right. Most see results in

> > a few months. I thought that sounded promising.

> >

> > The frustrating thing is, if there isn't constant repetitive things, he

> > just 'forgets' -- which I totally don't get. I was also going to try Brain

> > Balance and Yoga too. Because I can't just do one thing, I got attack from

> > every angle possible. LOL!

> >

> > My god, I can write a book on Rob.

> >

> > Another interesting piece of info I got, my brother found all of Rob's

> > immunization records, and my Mom's..she put them together and circled the

> > MMR. She knew. Rob received three separate shots all on the same day. My Mom

> > got the shots while he was in utero. This was 1984 - when the dtap and all

> > the other shots (except the MMR) had mercury in them. He was getting flu

> > shots, booster shots, I was like - this poor kid was assaulted from birth.

> > My Mom had dental work (amalgams) put in while he was in her belly. He had a

> > booster shot of tetanus while in the hospital for his 2nd hernia operation

> > ...it's amazing he functions as well as he does. I just got all the other

> > records, and all I can say is "wow."...what crap health care he received.

> > None of his doctors talked to each other.

> >

>

September 8, 2011

Digit Spans!!! -TammyTo: mb12valtrex Sent: Thursday, September 8, 2011 8:29 AMSubject: Re: Update on Rob (27 yr

old, Autism, PDD-NOS)

Funny you say that, I've never felt alone in this journey, it would always seem when I got 'stuck' the right thing seemed to come across for my viewing and understanding...I know she is there, helping and guiding. And when I get frustrated I yell at her telling her this was her problem to solve, not mine, but then I am reminded that my child was saved too. Because of my experiences as child with Rob, it was not hard to get out of denial, and deal with Jimmy. Easy child rearing was not my lot in life, I guess. lol!

Rob gets them 2 times per day. I do the B-Right Jarrow Formulas which is pretty bio-available. I found this helps a lot, but I can't help but feel this isn't everything. He's also on CLO, Selenium (for Thyroid), Zinc, Syntol, at night, if he feels like it, I give him the B12 sublinguals ...and of course, we are juicing, and he's on the diets..(lo ox, Feingold, IGg Free, gfcfcfsf) - Don't get me wrong he is SO much better, but sometimes I want to boink him in the head and say "dude, we've just talked about that" -- like it hasn't reached his long term memory yet? But he will ask me again about it like a few days later...He is good about putting things on his calendar, and making notes about how things need to happen.

For instance, he has been doing his laundry for about a year now, he still (once in a while, not everytime) will come to me and make sure that he isn't using too much soap. I've made charts, used a black magic marker and put ROB's Laundry Soap Mark on the cup, put directions right above the washing machine (one with words, one with pictures)...at first I thought it was his way of trying to get me involved and wanted conversation, but then I realized it's he can't remember.

But! Judy (his boss) asked him to bring in his Ipad to work, and he remembers that, he remembers what kinds of things they talked about they want to look up, etc. Last night he was sitting at dinner and all of the sudden (because he was thinking about work) said "I forgot to get the kids cookies last week. It had their name on it, and I forgot." ...so it's intermittent? Or it's just selective? I know when he can't remember, he gets upset. I use humor with him to offset his obvious acknowledgement of this deficit.

I am open to suggestions, as this one is kicking my keister...

So far I was going to try - the ear acupuncture, higher doses of B1 or the patch for TTFD (it's great for brain activity - used for epilepsy), brain balance/yoga, and having him do 'memory' with Jimmy (as a game they can play together)...I can't help but feel like it's a deficit that I am missing.

ugh...laura