Scientific American article my WW leader...

[LIZARD]

...gave me yesterday...WOW!!!!!!!!!!!! Check it out!!

http://www.sciam.com/print_version.cfm?articleID=000B7F38-893D-152E-88E283414B7F0000



LIZARD, definitely keepin' this one! :D

[JungleWoman]

That is very interesting!

I didnt know that Kanner and Asperger were independent and didnt know eachother! Even more eerie that they came up with the same name for the disorder.

Truly cool that your leader gave you this :D

A<><

[mryan]

I don't normally post here. I used to, but then found out my daughter(Hannah, 7) was actually Landau Kleffner Syndrome ( seizure disorder). I was so excited to read this article, it explains Hannah totally. She could not deal with sensory info at all. She reacted so weird to noises and sights. Then she was on prednisone for a long time and now she is on lamictal. It is just as the article states, "if the child's mirror neuron functions are dormant rather than lost, it may be possible to revive this ability." When we got the seizure activity under control then she responded to stimuli appropriately. She has most of her speech back and is getting better everyday. Just thought I would chime in...... - Martha

[peglem]

While I did find the article fascinating, I still have a problem with the certainty that there is a genetic cause, or predisposition for everything. Do they really know this? I also think they should be very slow to extrapolate results obtained from HF to low functioning. And, one more thing- having TONS of experience with a head banger, at least in my daughter's case, I do not believe it is self stimming. I think it is more like a tic- overwhelming urge(causes anxiety/arousal) and sense of relief when urge is satisfied. I think most head bangers are so low functioning that they cannot say why they are doing it, so the experts concoct an explanation which evolves into scientific fact w/o evidence. The mirror neuron theory sounds very plausible- I just think they need to be careful not to assume that same or similar behaviors(autism) always have the same cause. My daughter is 12 years old, until she was 10- NOBODY ever looked to find out why new behaviors or new problems were happening. Since you could explain everything that she did as being autistic or a result of frustration from poor communication. Now, a picture of a child who has been suffering brain damage for many years as the result of autoimmune problems from untreated strep infections is emerging. They assumed they knew the cause- would not look any further and now....what a mess. Sorry about my little tirade here- I did find the article informative, just went off on the assumption parts....

[milivica]

Peglem, I see what you're saying...I think when I read the article I assumed it was for 'some' cases. Although, I did take from the article, and maybe was wrong (for sure a possibity!) it was more about autistic behaviors than autism. If that makes sense.

I loved the MU stuff...I have to admit, I had a real emotional time reading a lot of it. I can't tell you how many people at the hospital I told that thing about babies sticking out their tongue if mommy does is bull, cause I can't even get him to look at me let alone do that. I mean, I knew...I knew I knew I knew. I just didn't know what it was I knew, in the 'honeymoon' days of never even having heard the word autism. Once in a while, how early I knew and all that intervention he lost (not that there really was any) hurts. Hurts really bad. I'm sure we all know that feeling. The older our kids, the more we know that hurt.

Just when I was getting kind of depressed reading, they made the ecstacy remark, baawawawaaa!!! Vincent's case manager flipped out when he said 'puberty', can you imagine, "yes this is Vincent's mom, he'll be taking ecstacy from now on to improve him MU functions, so I don't expect your goals for age appropriate touching are going to go very well". I know they didn't say give him ecstacy per say, but it was just the relief I needed while reading things that were hard to read. Cause I knew it from day one. And no one would listen...except dh, but he and I alone couldn't help him.

I wasn't agreeable with their ideas about not doing eye contact, but maybe I wasn't understanding what they meant. Who knows.

Again, this MU thing, wow. I and I'm sure all the other parents here knew that, but like, didn't have the verbiage for it. I for sure didn't know there were parts of the brain that turned on or off if a task was being done, or watched like the monkey/peanut stuff. That's another thing that made this hard to read....I don't see that Vincent's MU was ever 'activated'. So maybe there's no hope to reactivate something that was never working or is absent. Anyhow.

I'm been pretty fixated on the hour show I saw last night, about Kim Peek (Rainman). There's something (I think it began with a C) that connects the right and left side of your brain. He doesn't have it. As he read, he used his left eye for reading the left page and right eye for the right page...unfortunately they didn't say if it was simultaneously, or one page at a time with one eye at a time. I'd like to know that.

Anyhow, great article Lizard...I can't believe I read the whoooole thing!

Mili

[Mother's Heart]

Corpus Callosum he has Agenesis of the Corpus Callosum. It's the band of white fibers that connect the two hemispheres of the brain...carry the communication and coordination between them

[LIZARD]

I'm been pretty fixated on the hour show I saw last night, about Kim Peek (Rainman). There's something (I think it began with a C) that connects the right and left side of your brain. He doesn't have it. As he read, he used his left eye for reading the left page and right eye for the right page...unfortunately they didn't say if it was simultaneously, or one page at a time with one eye at a time. I'd like to know that.

Anyhow, great article Lizard...I can't believe I read the whoooole thing!

Mili

Mil,

I just ordered the book:

http://search.barnesandnoble.com/booksearch/isbninquiry.asp?EAN=9780965116305&x=09212210

I can't wait to read it! I didn't catch all of the Discovery Channel show. What did you think of it?

LIZARD, who really hopes I can see it again, in its entirety! :)

[milivica]

Corpus Callosum he has Agenesis of the Corpus Callosum. It's the band of white fibers that connect the two hemispheres of the brain...carry the communication and coordination between them

YES! That little sucker. Corpus Callosum.

Lizard, the show was awesome. I was really overwhelmed watching it, because I had just watched a show on Ferrel children, and was exhausted from all the emotions of that. Plus I was making some comparisons in my mind to kids on the spectrum...especially the differences which there were more of than simularities. However, Ferrel children that were more sensory deprived than left 'in the wild' had more 'autistic behaviors'. Anyhow, I'm processing all this, and just filling my head with endless streams of thoughts, and boom Kim Peek comes on.

So yes, the show was positively awesome, as all awesome shows not nearly long enough. I most loved the fact that one scientist lady mentioned that he really wants to connect with others. And named the 4 phrases he uses over and over to do so. She said one thing I loved and can't remember, something about not having theory of mind but she put it VERY well....gosh I can't remember, like, he doesn't know she's not thinking what he's thinking and he doesn't know that she knows...eh nevermind, I can't remember.

I thought of Vince and myself lots...in terms of his social deficits. Just like Kim Peek uses the same phrases either to connect, or to have that 'static' comfort of knowing the next response I see Vince do, I used to do too. I loved that Kim Peek wound up raised in a home with love instead of an asylum, and wondered how many lives that could have been happy were destroyed - I know that happens to nt's too. I mean, I see no difference in asd's of all ages and nt children in terms of vunerability when in the hands of 'the state'.

I loved how Kim Peek said he and his father shared the same shadow...and loved that his father found it profound. Me too. I think Kim Peek would be a totally enjoyable, fantastic and exhausting friend to have.

It's cool you got the book.

Mili

[tgrimes]

Well , I thought it was really sad. Mostly because i do not think this person would command any respect from any of the people we saw interacting with him were it not for his savant ability.
Except for dad, of course... and he is over 80 years old, and still dressing him and brushing his teeth?

[Isabelle]

I saw at the very end a reference to what could really be the cause behind all the damage to the brain: a virus (neuropathy-related vaccine?), a weak immune system perhaps inherited making it a genetic disease, fevers/infections, seizures and with a every generation more severe the damage done to the brain and nervous system.

[peglem]

I didn't see the Kim Peek thing the other night, but did see it awhile ago. I didn't reflect on it too much, as my daughter is much lower functioning and hard to draw parallels.
Mili- Funny you should mention the tongue sticking out thing. I learned about that in college- by @ 4 months they should be immitating tongue sticking out. I tried this w/ Allie when she was @ 6 mo. old and I was becomming concerned. Of course, she didn't imitate, but, may be due to oral motor problems because to this day, she never sticks out her tongue- not even when we've tried to teach her to lick things like the lid from pudding.
And I think you're right about the article being more @ autistic traits- I went back and reread it. Funny how my first impression was so colored by the crap I'm dealing with right now!

[milivica]

Funny how my first impression was so colored by the crap I'm dealing with right now!

ALWAYS! Everyone is like that I think. Look how differently, tgrimes, Isabelle and I responded to Kim Peek. Had I seen the show about him at a different time in my life (heck maybe even next week), I'd have responded just like tgrimes (ok but not like Isabelle cause I don't know the stuff she knows).

[tgrimes]

well, to comment on the original article here - the part about the line drawing test and asking "..which shape is Bouba and which is Kiki?" is pretty fascinating, I have to try this on a few people just to check it out becuase I have a hard time believing that there is ANY question that would generate a 98% consistency in the GP's response.
But this is the best part:
"...old clinical observation that high fever sometimes temporarily alleviates the symptoms of autism..."
What? This is an old autism adage? Anyone else heard about this?

[peglem]

Nope, never heard the fever thing before. But, Allie never gets fevers- no matter if she is sick or not...maybe 2 or 3 times in her life.

[LIZARD]

I can say that Drew was better-behaved when he was sick, especially when he was younger; that may be what they mean, but it sounds harsh, huh??



LIZARD, still not sure what this ref means...:confused: :o

[peglem]

Allie's behavior gets much, much worse when she's sick- that's how I know she's sick. No convalescing for my girl-hyper and ragey.

[Mother's Heart]

behaviour here is worse when sick, unless very sick, then sleep/lethargy take over.

However,,,,it was striking when my son was young and quite frequently very sick, how consistently he made the BIG milestones while he was sick. You know, verging on pneumonia, should be in hospital, but learns to pull to stand, speaks first words, etc etc. maybe the antibiotics, maybe the temps, maybe the increased need to do in order to have more intense needs met? maybe the down time from other demands? anyway...i remember reading back then, a decade ago, about how this was a thing held in common by autistic kids. heard it from other parents of ASDers too.
interesting phenomenon.

[tgrimes]

I guess this is a real theory - I looked into it a little and apparently the studies started back in (1980s?) when a NY mental hospital had a ward where several contracted a flu and the autistic patients showed improvement, which promped some studies into it since then. On another site a doctor claims that a totally nonverbal person became 'cured' and began 'talking and acting normal' but after the illness was over regressed back to original state. (That one sounds a little farfetched, right?)

Seriously, though, just an observation.... when my son gets totally out of control I put him in the bathtub. This has worked wonders for many occasions, but the reason I started that was because I heard about using smells to overwhelm other sensory overload and I did it for that reason. Here all this time I thought it was the tutti-fruiti doing the magic, and I couldv'e just used plain ole warm water:eek:

[LIZARD]

Seriously, though, just an observation.... when my son gets totally out of control I put him in the bathtub.

Temple Grandin has talked a lot about how soothing water play is to her and many other autistic kids. Drew is a new man after going to the Y. :)


LIZARD :)

[Isabelle]

What about the tendency to yawn when others do it? Where does that belong? My son tended to smile but hardly ever yawn but if the doctor tells him to stick the tongue he does it, he understands the words, he never needed the demonstration, ok I can't say "never" he learned it somewhere.

The only time he was lethargic when sick (with a three day fever of 104) was at 20 months after the MMR vaccine that's when his particular "autism" began. He had eye contact and some low voice speech at times.

Peglem, I am suspecting that his headbanging and OCD comes from those 3 days of fever, perhaps a particular kind of strep.

[peglem]

Yeah, I was thinking about the yawning- Allie still will not yawn contagiously-when somebody else does. But, that's different from tongue sticking. Tongue sticking is imitative and very young babies/children seem to have an innate ability or drive to imitate- at least the nt ones do. Yawning is more of an unconscious thing and scientists can't figure why humans seem to do that universally. They have some theories about it being some kind of social instinct, but it sounds kind of lame to me. Have you ever tried to suppress a yawn in answer to somebody else's yawn? I can do it if I concentrate- but the moment I stop thinking about it- out comes the yawn.
Isabelle, we never knew about Allie's strep for a long time, but did notice that her streppy behaviors seem to wax and wane. Seems like she always got worse @ Octobers end, better by beginning of Dec. Then relapse @ end of Feb. Here in the desert that corresponds to Autumn and Spring, so we thought she must have seasonal allergies. Anyway, we only saw the correlation to strep @ 2 years ago and figured the rest out from hindsight. The behaviors though, are most likely caused by an autoimmune response to the strep (the theory is that the antibodies to strep mistakenly attack the basal ganglia in the brain). I see no reason why other pathogens could not create the same sort of situation. Researchers do say though, that one of the antigens on the surface of the strepA bacteria resembles antigens on the basal ganglia cells. The result of an assault on the basal ganglia is OCD and/or movement disorders. I plan one of these days posting all the stuff we've been through in the last couple years w/ Allie, but its still too raw, I have to kind of suppress my feelings right now to avoid basket-casism, so I can do what needs to be done here.

[Isabelle]

Peglem, looking at old papers and shredding, I found a note I made from a post that dkw from TS made about his son's abnormal movements. I don't remember if I wrote exactly her words, so here it is:

"My son is carnitine deficient yet the serum acyl carnitine levels are at the upper end of normal. It's like he cannot convert the carnitine enzyme to L-Carnitine. The way to go around this possible metabolic error is to take L-Carnitine. Combined with EFAs I have seen dramatic improvements."
"He has large muscle movements tics that involve the entire body which always exarcebate AFTER ILLNESS which is typical of metabolic disorder."

What do you think? Has Allie been tested for this particular metabolic disorder?
My son when he was on Carnitor improved tremendously, his drug-induced abnormal movments and head banging faded until given again Risperdal.

[peglem]

Allie does seem to improve with acetyl L-carnitine. EFA's don't seem to make a bit of difference. I can tell you that the risperdal does help her, and I think I've figured out why. When you get basal ganglia damage, the dopamine, or its receptors get out of balance with the other transmitters. If not enough dopamine- you get tremors- parkinson's kind of stuff. That's why parkinson's is treated with dopamine agonists and things that block or partially block the other transmitters. When you have too much dopamine you get the kind of motor problems that Allie seems to have, so you want something that blocks (partially) dopamine and/or increases the other transmitters. (one of the transmitters that balances dopamine is acetylcholine, which is why we saw a good response w/ bethanecol). Well, that's what Risperdal does. Now, if you give too much-the balance can swing the other way and you develop dyskinesia from not enough dopamine. So, its tricky- but I have not found any supplement combinations that adequately address her problems- I tried for years...She's been getting worse in the mean time and she really needs help with this issue-NOW! I can't wait to see how the various and sundry supplements will work. She was off the risperdal prior to her tonsillectomy- I needed to see how she would do unmedicated if we got the strep under control. Problem is, w/ autoimmunity, even w/ the strep gone (it may actually be gone!) her own body is still attacking tissue. So, I begrudgingly put her back on it...Its such a relief to see her happy again! Its not solving everything...but maybe we can give Disneyland another go sometime! So, I'm not pro meds- no way, but right now, for my daughter, they are a blessing and a way back from the most hellish misery.
As far as testing goes- just recently she was given a full metabolic panel, including celiac testing and antigliadin testing- the only abnormal result- high strep titers. We'll have those checked again real soon to see if they're going up or down- hopefully down! But, this was after over a year of almost constant antibiotics...and still high levels? We are battling yeast as a fallout of that. She was/is on probiotics to protect the gut (no diarhea the whole time!), but has been getting vaginal yeast (and her belly button!). Anyway, there's just too much to this and I should have been in bed a long time ago!

Watch out Mili- your queen of the endless posts- title is in jeopardy!

[Isabelle]

LOL, for writing so late and getting Mili off her title. Move over for me too.

Apparently, our children responded positively to Carnitine. I don't know what was in the Carnitor, I thought the fishy in it was helping Danny.

Yes, strep or many other bacteria/virus can attack parts of the brain but the worse is when the germ leaves and the immune system continue producing antibodies and they think that cells of that part of the brain are foreign elements and ****-bent in destroying them. Antibiotics can't do anything against those antibodies and use of preventive/profilactic antibiotics is in doubt. What can be use to get the immune system to work properly?

So in base of that theory he was tested for strep and was found high titers, a few months later again tested this time for herpes and found high titers, when the dr at the time couldn't give me a satisfatory answer I went back to the lab who in turn sent me back to the dr and he says nothing of importance, everybody has herpes/strep virus and for high titers he must have been infected recently, which wasn't the case. He never had the telltale sores on his mouth.

So, hopefully you find a balance of supplements and Risperdal for Allie, we tried that and didn't work.

[Isabelle]

Rereading my post I noticed that Brain Talk has censored my use of the word ****. I didn't know that **** was a bad word Good to know.

[LIZARD]

Rereading my post I noticed that Brain Talk has censored my use of the word ****. I didn't know that **** was a bad word Good to know.

You obviously haven't seen me say "h3ll" in my posts! :D


LIZARD, who's learned LOTS of tricks on other forums :D

[Isabelle]

LOL! You Liz, funny girl! No I didn't notice those details. But now I know. Thanks for the enlightment :D

[LIZARD]

LOL! You Liz, funny girl! No I didn't notice those details. But now I know. Thanks for the enlightment :D

Well...$h!t...:D :p We'll see if my @$$ has shrunk this week at WW! :D (Okay...don't wanna get banned! :eek: I'll shut up now! :D )


LIZARD, LMAO!! :)

[Braindrain]

Well...$h!t...:D :p We'll see if my @$$ has shrunk this week at WW! :D (Okay...don't wanna get banned! :eek: I'll shut up now! :D )


LIZARD, LMAO!! :)

"We'll see"?? Does that mean you're posting pics here?? I wanna see!!:D

[Isabelle]

Thanks! We need more of that sense of humour.

[milivica]

LOL, for writing so late and getting Mili off her title. Move over for me too.

I have no idea what you mean by my 'title', but if you are suggesting that I was staying on topic, well, heh heh, you are sorely mistaken young lady. I have NEVER stayed on topic in the 6 years I've been here I'll have you know.

:D :D :D

[peglem]

Nope, she was talking about your title as the queen of lengthy posts.

[milivica]

(Ohhhh, now I get it...but I was trying to crack Isabelle up by using my own flaws...but don't tell her...shhhhh ;) )

[LIZARD]

Well...$h!t...:D :p We'll see if my @$$ has shrunk this week at WW! :D (Okay...don't wanna get banned! :eek: I'll shut up now! :D )


LIZARD, LMAO!! :)


So, I didn't tell ya'll...I did!!!!!!!! Another 1.4 gone fahevah! :D Total = 87.6!!!! :D


LIZARD, shrinkin' away!!!!!!!!!!!!! :D :D

[Isabelle]

Congrats on your seat shrinkage, it always good to hear another woman beats the crap off the fad odds :D

[LIZARD]

Congrats on your seat shrinkage, it always good to hear another woman beats the crap off the fad odds :D

Thanks, Darlin', but lemme tell ya, anyone who wants to, can. This program is so easy to follow, honest to God. I have tried so many regimens out there. This is the best in the world. :) It's what the rest of the (skinny) world does. It just shows us how. :) That's how I know I'll NEVER go back to weighing twice what I should! :)


LIZARD :)

[Kristen (ColeysMom)]

This post came up as a similar thread to the 'breakthrough' thread Mili started...I missed it when Liz originally posted & was curious...

I found it interesting that there were more than a couple references to things we've been discussing in the last few days, so I thought I'd bump it up...