Monday, December 24, 2007

A Christmas Meme

I have been tagged! By a fellow parent of a recovered child Artemisia. She is a gifted writer and mom, and best yet she makes me think. Her son is now a teen, so I relish hearing every single bit of what his life is like. It's a good life I'll tell ya! So here's to Artemisia, Boo, and a shot to the rest of the recovered children out there. We may not be popular, but we exist. I may not be happy that I am considered part of a faction(s), but I am happy that I have company. It's nice there are minds that don't feel I am less worthy just because my son no longer requires services. I'd much prefer that factions just go away and us Autism families can just co-exist with acceptance,support, and tolerance. We only really have each other. A tall order, a dream Christmas Gift!

So here goes:

Best Childhood Gift
A plastic horse statue (model?) with a real leather saddle and bridle. My mother would store the saddle and bridle carefully in foil up out of reach in a kitchen cabinet. I'd sit for hours putting that saddle on and off, pretending I was the Barbie taking care of it and riding it around town (my fort made of couch pillows).

Best Adult Gift
Leo's Clinical Supervisor said it was a go to begin our fading program (fading services). A gift for all of us, after the holidays his hours would be less. This also meant we could go to California to visit my family for two weeks instead of one. We didn't need to cut it short for a fear of a regression.

What You Hope For In The Future
That my husband and I can figure out the best school/town scenario for Leo's middle school transition. I hope both of my kids can have an uneventful but excellent middle school and high school experience. As much as one can hope for anyway! This topic is what keeps me up at night. I totally obsess too much over this topic!

I tag Erica and Maddy. Maddy's been quite busy with Memes, so please don't feel like you must post something. I just had to include you in my mention of honorable moms. I also tag Laura, another mom that is as funny as they come and has great creativity when it comes to costumes. They are uber moms that also make me think like Artemisia. I also tag all lurky loos and other people that really know me. You know who you are! Just post me a lil' ole' comment. Cheers (as Maddy says)and Happy Holidays to you!, Ashley

Hi all. This is an addendum to the post. I've unfortunately had to enable comment moderation. The negativity during the holidays just didn't work for me. I'll never understand how people take the time to post hate, rather than just move on to reading blogs they agree with.

Here is a copy of the regular comments people left me up until now:

Maddy said...
See! Aren't you glad you're on my google feed reader now! Thank you for the tag. How come you've not linked to Artemisia? Do I need to type that into google blog search.

I'm up to my ears in cookies, sausage rolls, snot and children [not necessarily in that order] but I'll put this on my to do list for as you noted I am well behind on these meme's [I have 27 in the works!]

Many happy seasonal greetings to you and yours.

This is my calling card or link"Whittereronautism"which takes you straight to my new blog.

2:01 PM
Ashley loves Leo said...
You are funny. Now that's a list! I went back and fixed Artemisia and added her as a link. It's
It's also on my blog list. Have a great time with all that cookin'!

2:05 PM
Casdok said...
Lovely meme!

2:49 AM

Monday, December 17, 2007

Autism is on Google's Top Ten "What Is" list.

Thanks to the Schafer Report, I found this little depressing nugget way too interesting: The Google Top Ten "What Is?" Questions By English Users Around The World are:

1. What is love?
2. What is autism?
3. What is RSS?
4. What is lupus?
5. What is SAP?
6. What is Bluetooth?
7. What is Emo?
8. What is Java?
9. What is HPV (human papillomavirus)?
10. What is gout?

Full article here:

Now you may ask yourself(or not), why I find this depressing? or even frightening about this list? For me, it's the fact that 4 out of the 10 are health related questions. About disease and disorders. What in the heck is going on people? Why isn't this list in itself a top 10 news story?

It's certainly a wake-up call for this generation. Music, love, and computers can only keep us motivated and going.

Is it me, or does anyone else out there think this is really really REALLY scary?

Tuesday, December 11, 2007

New Jersey Makes Flu Shot Mandatory

Well, officially next week, the state commissioner will add the flu shot to the list of mandatory vaccines for school children and day care children. They'll be the first state to add this shot. New Jersey of all places, a hub of Autism stats.

The coverage of this news does include the fact that parents can sign a religious or medical exemption form. Just a sentence, lost somewhere in the middle. Taming of the herds I suppose. I guess I should be happy they still have a choice. Hopefully parents will educate themselves of their choices.

Wednesday, December 05, 2007

Asperger's and Reality T.V., NY Times Take

I am in heaven. My favorite topic, the Autism Spectrum, is paired with my favorite way to relax, watching reality t.v. For weeks I've been watching the show, America's Next Top Model, fascinated by the whole thing. Caleb's mom, a fellow recovered mom that I wish would blog, got me hooked.

Each week I'd imaginine what it's like behind the scenes, conversations about how to carefully play the "different" girl. Trendy, controversial, a risk? Who knows. Either way, I'm happy, and in my own world and on my on blog, I'm content. Sure, things weren't perfect, but for layman, the airings went along nicely in my opinion. My new mantra comes to mind and I'll share it with you, which also comes in handy when visiting relatives during the holidays.

"Take what people can give you."

We miss you Heather, so here's a shot out to you.

Here's the NY Times coverage from yesterday:

Asperger’s Syndrome Gets a Very Public Face

Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.
But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.
She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.
The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.
By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.
Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.
“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”
But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.
A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.
One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.
“I wish I could get the joke,” Heather laments.
“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.
But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.
In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.
She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.
To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”
Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Beijing, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.
“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”

Friday, November 23, 2007

Conferences and Stuff Happening In 3's

Friday was a big day as I knew it would be:

1) Leo's Parent/Teacher Conference
2) My Grandmother passing
3) Left my children with family for our first weekend alone in 9 years (Leo is 9).

Shockingly, our conference didn't bring up any deficit that required services. Hurray! I was relieved that my husband was able to make the meeting so he could repeat what he heard which did match what I heard. I wanted to be sure I interpreted the situation accurately, and since I knew I'd be freaking out inside, I may miss something. As we know, 3rd grade is the big marker year, testing begins and this is when residual issues can come up. I've seen his marks so far and his report card. A solid B student. We'll see what happens after she knows him better and what happens after standardized testing and the end of the year. Then for sure I can be relieved. Or will I ever? I don't know.

Leo's teacher seemed to really enjoy him, and said he was a very enthusiastic learner, and gives it his all. He participates most of the time, and seems to be in a good mood all of the time. She said he's always willing to help and is very respective and considerate of his peers. She also said he is someone other kids seek out as a friend. Of course, that one got both of us teary. I asked about the talking-out-of-turn, and she said he "needs to raise his hand more often", but didn't seem concerned about it. When I asked more about it, she seemed confused, so of course I changed the subject. Obviously not a disruption or a major issue. Something to work on for sure, but not as it once was. She said all the right things, "He's a sweet boy, you must work very hard as parents. Good for you.", and of course I wonder if she says that to everyone to relieve stress. Who knows. Either way, I am happy Leo continues to blossom and not need any modifications. I am beyond grateful and amazed by him.

As I was getting ready for our big weekend, I found out my sweet grandmother finally passed away. We knew it was coming, she had been in the hospital and a home for a while now. It was a perfect ending to an incredible life. She died naturally at 96, with family around her, in a quiet environment with material comforts and things that were familiar to her like pictures. I really feel for my mom, and am relieved for her that she can recover from her loss.

My SIL and MIL offered a while ago to tag team for one weekend this fall, and so we finally did it. Yay! The kids did GREAT, even when my daughter had a fever the night before that broke and a cold while we were away. I am so grateful that we can actually leave them - they are old enough to stay without us, not in their house. Leo is no longer hypoglycemic, and can basically eat anything with no consequence, although an enzyme and no gluten is preferred. The days of constant stimming have been long gone, but a toddler with a "high-maintenance" older brother kept us home. The food/supplement stuff was too challenging until recently. A couple days on a skeleton program was just fine. The days are gone when one bite of a muffin would send Leo into a catatonic-like fog. Living by the clock with food is also gone, so leaving them in the hands of my inlaws was a reality. Everyone had a great time and for sure we'll do it again. I can't believev it's been 9 years! I am grateful though, many Autism families can NEVER leave their kids. I have a friend with a son with diabetes - you thought Autism was a lot of work, man! So, we were grateful to not worry and not worrying meant we could really relax and have fun. It was like a super date!

Friday, November 16, 2007

My Letter to Prince George

ATTN: State's Attorney, Glen F. Ivey; Fax: (301) 952-3775
Maryland Governor Martin O'Malley; Fax: (410) 974-5735

Dear Mr. Ivey and Governor O'Malley,

Please stop this embarrassing stance on mandating vaccinations. I thought I was reading fiction when I heard about this civil rights violation. If you've had a chance to read any story lately about vaccinations of any kind, it's obvious that the vaccination protocol in this country is dangerously outdated. I am not against vaccinations in general. I am vehemently against one-size-fits-all vaccinations and vaccinations that are for profit that cause more disease.

Please end this madness and horrible cost to your taxpayers.

Wednesday, November 14, 2007

Things That Make My Head Explode

1)The notion of carbon monoxide in food, accompanied by idiotic label disclaimers. Companies deem it safe based on nothing.

2)Pediatricians "plight" or "call" for better diagnosing Autism. Yeah, it was their idea, not all of us screaming moms, due process, and insurance companies.

3) The media's spin on the latest CDC research about vaccinations. That death rates for 13 diseases that can be prevented by childhood vaccinations has decreased by 90% in 9 of them. Huh, nothing about childhood disorders skyrocketing.

4)Prince George's County in Missouri trying to force 2,300 students to vaccinate. I wonder how many therapy hours we could get for the cost of the attorneys' fees alone? Not to mention the cost of their board of ed's time and money.

5)Waiting for Parent/Teacher conferences to be over. Two days and counting.

Leo's first stim. The rug in his room

Leo's latest stim. Baseball cards. A true sports junky.

Tuesday, November 13, 2007

3 Days Till Parent/Teacher Conferences

I was talking to Leo about math this morning, and I told him how great it is that he's good at math. That his life will be so much easier because he is so smart. He says, "You remember when I needed an aide? And now look, I am good at stuff." I said, "Yes Honey, it's pretty amazing isn't it? You needed extra help and worked very hard. And today you are advanced in many areas and don't need any help."

I was so taken back by this on so many levels. First, we NEVER used the word aide. We called them shadows, also a word we never used in front of him. And the one-to-one therapists were called teachers or tutors. He must relate to his peers at school that have aides. I asked if he talks about this at school, either with his teachers or peers. He said no, and I didn't ask why. Is he self-conscious? Over the years we've been very open and matter-of-fact about it, repeating the "everyone is different, everyone has stuff to work on" speech. If he said yes, I would want to know how it was received, how he explained things, and I'd assess the situation to see if he needed to know about the label of Autism. I don't know what else to add at this point.

On another topic....I told Leo that he needed to go shopping with Dad to buy new sneakers for school. His eyes lit up as he began describing exactly what he wanted. He's always been brand loyal (Sketchers recently, New Balance in a stimmy way when he was little). But today, he talked about shoes his friends wear, and described in great detail these basketball high-tops. Leo is now into fashion, what's cool. He came home with these:

We had Veterans day off, and I found myself at the mall using gift cards with the kids. I looked at Leo in amazement. Who is this kid in 5 1/2 size Adidas with a baseball cap on backwards? I mean really?

Thursday, November 08, 2007

Girl Gets Detention For Hugging

Girl gets detention for hugging
Illinois middle school bans public displays of affection; parents urge change
The Associated Press
Wed., Nov. 7, 2007

MASCOUTAH, Ill. - Two hugs equals two days of detention for 13-year-old Megan Coulter. The eighth-grader was punished for violating a school policy banning public displays of affection when she hugged two friends Friday. “I feel it is crazy,” said Megan, who was to serve her second detention Tuesday after classes at Mascoutah Middle School. “I was just giving them a hug goodbye for the weekend,” she said. Megan’s mother, Melissa Coulter, said the embraces weren’t even real hugs — just an arm around the shoulder and slight squeeze. “It’s hilarious to the point of ridicule,” Coulter said. “I’m still dumbfounded that she’s having to do this.”

District Superintendent Sam McGowen said that he thinks the penalty is fair and that administrators in the school east of St. Louis were following policy in the student handbook. It states: “Displays of affection should not occur on the school campus at any time. It is in poor taste, reflects poor judgment, and brings discredit to the school and to the persons involved.” Parents urge change in policy. Coulter said she and her husband told their daughter to go ahead and serve her detentions
because the only other option was a day of suspension for each skipped detention.

“We don’t agree with it, but I certainly don’t want her to get in more trouble,” Coulter said. The couple plan to attend the next school board meeting to ask board members to consider rewording the policy or be more specific in what is considered a display of affection. “I’m just hoping the school board will open their eyes and just realize that maybe they shouldn’t be punishing us for hugs,” Megan said.

© 2007 The Associated Press.

No it's not fiction you're reading. Stupidity dominates doesn't it? When situations get tough, as it does when monitoring the appropriateness being physical amongst students, people opt for nixing it all. Is this easier? I don't think so.

Wednesday, November 07, 2007

I heard from Pepperidge Farms

Well, sort of. At least I got a generic response. From Campbell Soup none the less. I guess Pepperidge Farms doesn't stand alone when it comes to feedback. Here is what it said:

Ms Ashley Morgan, we received your message and appreciate your taking the
time to contact Pepperidge Farm.

Your comments have been forwarded to the appropriate department. We
appreciate feedback such as yours as it alerts us to consumer preferences.

Please contact our Consumer Response Center at 888-737-7374 if you require
further assistance.

Thank you for visiting the Pepperidge Farm website.

Pepperidge Farm Web Team

At least we try, right?

Tuesday, November 06, 2007

Voting for the Goldfish Cracker

On the drive home from voting this morning, I fantasized about what I wished was on the ballet. Here's a short list for the Board Of Education Section:

*Director Of Special Ed (R) (D) (Sp. Ed. Mother) (just not an idiot)
*Cafeteria Menu plans and cost per pupil (high) (medium) (low)
*Weak link Teachers to Place on Notice(fill in only)

So what, may I ask, would you like to vote for if you could????
What can we vote for that directly impacts our everyday lives? Other than regular voting, I choose to vote by complaint letters. I actually have so many, I have them organized by category in Word.

While packing Leo and Sydney's lunch up for a play date at a friends, we got on the topic of snacks at other people's houses. Leo said he's always wished for goldfish, "They always smell SO GOOD, Mom". With that, I knew what I'd be doing for part of the morning. Here's today's complaint letter to Pepperidge Farms.

Hello home of the gold fish cracker! I wanted to ask if you could please make a gluten-free dairy-free version of your cracker. Your cracker is so delicious and wildy popular among children as I'm sure you know. This popularity includes children that can't have them due to food allergies and intolerances. This growing population are dying for a version they can have! Goldfish are part of all children's culture whether they can eat them or not. At school, at play dates, at the park, this is what you see moms pull out of their schlep bags.

You may have heard that many children on the Autism Spectrum do very well on a wheat and dairy free diet, which aces out their favorite cracker. A growing percentage of children have food allergies, making an allergy-free version is in super high demand. Trust me! They will fly off the shelves. Not bad for PR as well. This is the new reality. Food allergies won't go away and Pepperidge Farms can benefit from these changing times. Thanks for your consideration!

Dare I ask for my beloved, the Cheez-It?

Thursday, November 01, 2007

Food In The Classroom

Boy I've had a crappy week. Not like the glory days, but for 2007 it's made the grade. I messed up at work - big time. Twice in one day. I like to think that I am permitted to make a mistake, but I guess not. Then, I failed yet again in advocating for my son. I try to get the moms to make party food that ALL kids can eat. Educating parents that a replacement food doesn't cut it is challenging. Eating Skittles while everyone else is enjoying a fancy cookie? Not being able to comment along with his friends about the cookie takes away the whole point of celebration. Sharing something as a group is the whole point of celebrations.

My son can't eat cafeteria food or the myriad of birthday crap that comes into the classroom each week. My district is completely unmoderated and out-of-CONTROL. So, I try to make the parties that happen 4 times a year, a party for MY son, the class, be a time where he can participate. I am only asking for 4 times a year. Baby steps.

You know what's crazy? I'm advocating for my son to eat junk food. I don't even want him to have this stuff!

Per usual, I offered to bake, discussions take place in a way that avoids toe-stepping. It's so highly competitive! I offer simple recipes. I offer to drop off GF flour. I tell them where to buy store-bought GF cookies. Sometimes I get lucky, but usually my son has to sit and watch the other kids enjoy the food.

In a nutshell: No one gives a shit unless it's their kid. In a nutshell, no one will do ANYTHING unless they HAVE to. My son doesn't need an epipen so it's not taken seriously. Why must a child's life be at risk for parents to alter their behavior and consider the perspective of others? And even then parents grumble about peanuts and such. That kids can't have their favorite brand of pretzels?

As we all know there is now a federal mandate for all school districts to have a Wellness Policy in place. There are 8 modules that cover mental and physical wellness; bullying, gym, air quality, recycling, health curriculum, all sorts of things.

A part of this is supposed to be about how food is utilized in the classroom. The teachers are no longer supposed to use food as reinforcers (I'm not talking about our kids that need this for therapy goals). But yet again I see candy corn given out to quiet tables. Hersheys Kisses given as a Friday farewell. Even after a health topic is covered! Once my daughter's class was visited by a dentist. After that, they ate cupcakes for a kid's birthday. What kind of mixed message is that? Popcicles can be purchased for "snack" by a 6 year old. Just insanity.

Economics dictates how seriously this is taken by the parents and teachers that live in each community. Budget money must compete for computer software, curriculum materials, new chairs, what have you. Naturally, the government has no resources to enforce this policy. So life goes on.

I live in a po-dunk town that has no clue about nutrition. Think 1975 with updated home decor. The culture here is very traditional, very heavy into using food for celebrations. Over the top. Any excuse to bring in a giant plate of brownies, count on my district. Working parents spend 8 to 10 dollars a day on lunch - delicious salads, wraps, panini sandwiches. But when it comes to their children, they complain about $2.50 per day for their child's lunch in the cafeteria. They don't care about the quality. Something that 99.9% of the time comes from a box or a can and reheated. Have you ever looked behind th counter? Spotless. That's because there's no cooking going on.

Happy Fucking Halloween

Tuesday, October 23, 2007

Strep Throat is Different For My Kids

Over the years, I've come to rely on the fact that my son responds differently to germs. My son has tested positive a couple of times for strep, but he only had one symptom, a minor sore throat with minor redness. No fever, no aches, energy normal. My pediatrician thinks differently, but whatever, and I move on.

Years ago I had read about a new emerging disorder called PANDAS in a couple of the autism books, but never paid too much attention to them because my son never presented with tics. Nor did he seem to ever get strep throat. Boy was I wrong. Thanks to our nutritionist, I have revisited this disorder, called PANDAS. I believe both my children have this - their presentation doesn't fit to a tee, but it's the closet explanation yet to what is happening to my children.

In a nutshell, a strep infection attacks the central nervous system, causing OCD and tics among other things. The majority of children today are believed to have strep in their system during an outbreak, but are symptom-free. Until recently, this was the case for my kids, although my daughter has had occasional blinking episodes for the last couple of years. I've always chalked this up to seasonal allergies.

Strep has broken out in their school this fall, many kids have been absent. At the same time, my son and daughter both got tics. In addition, my daughter got very emotional and clingy. True, we could attach this to numerous other reasons, but it totally matches with the timing.

Below are numerous links. I highly recommend any parent with a child with an ASD or ADD/ADHD to review this information, in the interest of making informed health care choices. This has been going on for over 10 years.

Here's a general discription taken from an NIH website:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.

If you are looking for traditional information, information your doctor has,the publication Pediatrics has a position on P.A.N.D.A.S. The cause (strep) and effect(tics, OCD behaviors) cannot fit into the scientific method just yet, so they are calling it an unproven hypothesis. I have to say it does sound very challenging. They do not recommend antibiotics for treatment.

This NY Times article talks primarily about OCD and the strep connection.

Here's an NIH website that describes this disorder.

The medical foundation, CIDPUSA is also a good reference.

Sunday, October 21, 2007

Birthdays, Tics, and Tremors, Oh My....

Leo turned 9 this week, his party was today. He loved getting his name announced on the loudspeaker at school and bringing in GFCF cupcakes. Fruit wouldn't fly this year, I am the fruit pusher. When I asked him what he wanted to bring, he at first named things that I knew he didn't like (like chocolate). He said, "But my friends like that kind of stuff." What a sweet boy, thinking of them when it's his day. He's so over-programed after years of NOT eating what they eat.

After negotiating a happy medium, "healthy" cupcakes, he was happy with all vanilla with vanilla frosting.

I asked how his friends liked them, for years they have passed even the most discriminating eaters, as I always apply generous amounts of frosting. He said, "I warned them Mom." But, warning aside, he said everyone liked them, just like previous years. And Leo was considerate in reminding me to leave one cupcake frosting-free for one of his friends.

We listened to all his birthday messages from his cousins, aunts and uncles, and grandmas. It brought tears to his eyes! A good birthday. A big weekend - a sleep-over with 14 boys for a friend's birthday, his last baseball game, and I hadn't a care in the world. I am beyond grateful.

I am happy to report that Leo has had a super year so far. He's got a wonderful teacher that is upbeat and seems to "live" for teaching. And no issues so far. He's learning a lot, and his new knowledge is really obvious. His teacher reports that he's a "delightful" boy with a lot of enthusiasm. He's learning cursive and actually likes it. Fine motor? Really? He's looking forward to learning more letters so he can write more words. He hangs out with different kids this year at recess - the baseball kids, but when it's rainy and there's indoor recess, he's back with his old best pal from kindergarten. I love this of course. He also likes to play wall ball.

He also sat next to his old best pal at his birthday party. His cousin on the other side. Very sweet! He's part of the nerd herd, in the top math class. He loves math, not a surprise. I look forward (sort of) to Parent/Teacher conferences. I wonder what she'll say - Leo reports he does talk-out-of-turn, but isn't sure if he does it less than last year. We'll see, but that's not what's on my mind. I'm thinking about testing. How will he test? Will he be able to demonstrate what he knows? Or will there be a gap? A processing issue? Untimed tests? A big year.

As I had mentioned, my daughter Sydney had been presenting minor tics (blinking and grimacing). After 3 days on the new protocol, she was tic free. I was elated. So quick! Temporarily, as one week later, Leo began blinking, and most distressing to me, presenting with something like strabismus. His eyeballs would roll horizontally back and forth, mostly to the right. I began feeling a bit P.T.S.S., but got myself together and immediately put together a protocol similar to my daughter's. As a birthday gift to me, Leo woke up on his birthday symptom-free. Yay!

Both were symptom-free for a couple weeks until I ran out of some of the enzyme. Then the tics appeared, minor, but were present especially around bedtime. I feel like I'm waiting for a million dollars to arrive (the enzymes). I'll be blogging about the cause of these tics soon....but in a nutshell, this is a symptom of strep. So when strep goes around as it indeed does, this is how it manifests in my children. No sore throat, no fever, no traditional illness.

I felt like a gift was laid upon my lap, I got an email from a mom of a 15 year old recovered boy. Merry Christmas early! I was so happy to hear from a mom of a child that is older than mine that is doing so well, and more importantly, happy. She wrote a passage titled "Then" which brought me back to when Leo was little. Perfect timing, as I always reflect back around Leo's birthday, as that's when he was diagnosed on his 2nd.

Artemisia got me thinking about Leo as a tiny baby:

I was really excited when I got pregnant. I was adopted later in life (thankfully), so I had always looked forward to a point where I'd have my own naturally family. When Leo began having small tremors following nursing at 2 months old, I was the only one that didn't think it was right. An infant shouldn't be having tremors, my instinct told me. I remember the pediatrician telling me it was probably nothing, but when pressed he referred me to a neurologist. I was so embarrassed, a new mom, sweaty, feeling awkward, nursing in front of him in his cold office. Did I mention I have giant breasts? Even before I was pregnant? Thank god I had the company of my husband. I got through it.

The neurologist dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? Their words didn’t ring true to me. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them?

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told me that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. In the arms of strangers, my screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of course, we discovered later Leo had hypotonia and overall weakness.

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

About a year later I began the search for what was 'wrong' with my baby, finally taking ownership of his wellness (and mine). After I self-diagnosed him, the rest is history, history we've all made. That was a long time ago, almost 9 years ago that my journey began.

My story is no different than thousands of moms out there. But we survive.

We figure it out.

Monday, October 08, 2007

Goodbye To My Rabbit

One of my bunnies, Brother, died suddenly yesterday. I'm very sad. I'm not sure how he died, but I suspect he ate something poisonous (they roam wild for part of the day) or that he caught a virus that attacked his nervous system.

Brother leaves behind Sister to eat the left over broccoli and apple cores by herself. She'll live a sole bunny existence, tolerating the dogs, the cat, and the various kids that visit her.

Brother and Sister together symbolize my duplicity on my blog - my private life and my Autism Advocacy life. Kind of weird that one side has passed. Am I jinxed?

Certainly, both sides of my life are alive and doing well - I'm working a lot on my writing goals and maintaining my main website. Things have calmed down a bit since the Jenny McCarthy 'explosion' that was my inbox. I'm back to a regular number of people asking for advice on how to get services or a dx. I'm grateful to the media that so many people have confirmation of Autism, hope, and some ideas that may work for their child. Funny writing grateful and media in the same sentence.

The kids are doing well, no issues so far this year and they both have very good teachers. This fall I'm focusing on my daughter's health - she's been presenting some minor facial tics (occasional eye blinking and grimacing) which is quite scary but not surprising. We have her on a detox/supplement protocol designed for her "environmental Tourettes."

For now, I don't have to worry about Leo since he's probably the healthiest in the bunch. I have no reason to complain, my job is so much fun, and my fall routine isn't too hectic. Of course, there's always Parent/Teacher Conferences mid-November. Leo says he still does the 'talking-out-of-turn', so we'll see what his teacher says. Ironically, he reports he doesn't do it in math class (a different teacher), when that was his topic that caused his excitement last year.

So we have just one bunny left. We'll enjoy her, but we'll certainly miss the most mischievous one, our Houdini bunny that could escape almost any pen.

Thursday, September 27, 2007

Top Reason Why Parents Must Read Actual Research Rather Than Headlines:

What’s been for dinner all this week? Jenny McCarthy. What’s for breakfast just this morning, timed on purpose with perfect execution? Take a look at the morning headlines:

1) New York Times: Vaccine Compound Is Harmless, Study Says, as Autism Debate Rages

2) Wall Street Journal: No Vaccine Link to Behavior;
CDC Study Finds Kids' Mental Acuity Not Hurt by Mercury

3) Reuters: Study shows no language effects from vaccines

All 3 headlines refer to the same article that will be published today in the New England Journal of Medicine. Parents and the general public possibly think there are several studies out there if you are just browsing at a newsstand. Herein lies the dilemma when we live in the world of convenience. We have to be careful.

I look forward to reading yet another correlational government study that yet again proves nothing. It’s not really science; the science that the CDC and the FDA insists the Autism Community must follow but they pick and choose when to follow. Rather than looking at our own children, as Jenny says, our research.

I’d like to go on record to say I had some major problems with some of the things said this week (more later), but all in all I am happy that the message of treatment and hope is out there for the masses. My main website stats hit the roof and I had so many parents email me for help in getting a dx, finding services and doctors in there area. All good news no matter what faction people belong to.

Thursday, September 06, 2007

The Wholey Trilogy

My health book for this summer was The China Study by T. Colin Campbell, PhD and his son, Thomas Campbell II. This book was compelling, disturbing at some parts, and a beautiful companion piece to my other favorite environmental health books. In my dream world, all parents would be required to read my Wholey Trilogy:

The China Study
Fast Food Nation
The Omnivore's Dilemma

Now that I've joined the club (reached age 40), I now see the effects of old age and just plain old living all around me (translation = cancer, heart disease, grandparents moving to assisted living, friends' parents dying). Quite sobering! I don't know anything about the C word or heart disease, so I figured that I better learn now while I still have my faculties (questionable, I know). The author is a long time government scientist that in fact was part of the panel that discovered the link between cholesterol and heart disease.

Today, Dr. Campbell does further research by joining up with Dr. Chen and this study. What's compelling is how large it is - 350 variables of health and nutrition with surveys from 6,500 adults in more than 2,500 counties across China and Taiwan, and conclusively demonstrates the link between nutrition and heart disease, diabetes, and cancer. The culprit is simple - animal protein. Not fat or cholesterol, but animal protein. The Western Diet, the diet of Affluence. By the doc that helped put cholesterol in the picture in the first place. It's quite compelling.

I also like that he doesn't preach details, just advocates for a plant based diet. End of story. Period.

Fast Food Nation supplies the history of fast food and industrialization of our food supply and what we are really eating. The Omnivore's Dilemma fills in the details left out by FFN about our centralized food supply and what we are actually eating. Finally, The China Study follows up with how our food supply causes disease. Conclusion? Mass production and centralization works for widgets, car parts, even Amazon.

For food? Obviously not. This generation's children and their parents are paying the price through illness, disorders, disabilities, and the high cost of insurance.

NY Times: Food Additives Raise Hyperactivity

September 6, 2007
Some Food Additives Raise Hyperactivity, Study Finds
Common food additives and colorings can increase hyperactive behavior in a broad range of children, a study being released today found.

It was the first time researchers conclusively and scientifically confirmed a link that had long been suspected by many parents. Numerous support groups for attention deficit hyperactivity disorder have for years recommended removing such ingredients from diets, although experts have continued to debate the evidence.

But the new, carefully controlled study shows that some artificial additives increase hyperactivity and decrease attention span in a wide range of children, not just those for whom overactivity has been diagnosed as a learning problem.

The new research, which was financed by Britain’s Food Standards Agency and published online by the British medical journal The Lancet, presents regulators with a number of issues: Should foods containing preservatives and artificial colors carry warning labels? Should some additives be prohibited entirely? Should school cafeterias remove foods with additives?

After all, the researchers note that overactivity makes learning more difficult for children.

“A mix of additives commonly found in children’s foods increases the mean level of hyperactivity,” wrote the researchers, led by Jim Stevenson, a professor of psychology at the University of Southampton. “The finding lends strong support for the case that food additives exacerbate hyperactive behaviors (inattention, impulsivity and overactivity) at least into middle childhood.”

In response to the study, the Food Standards Agency advised parents to monitor their children’s activity and, if they noted a marked change with food containing additives, to adjust their diets accordingly, eliminating artificial colors and preservatives.

But Professor Stevenson said it was premature to go further. “We’ve set up an issue that needs more exploration,” he said in a telephone interview.

In response to the study, some pediatricians cautioned that a diet without artificial colors and preservatives might cause other problems for children.

“Even if it shows some increase in hyperactivity, is it clinically significant and does it impact the child’s life?” said Dr. Thomas Spencer, a specialist in Pediatric Psychopharmacology at Massachusetts General Hospital.

“Is it powerful enough that you want to ostracize your kid? It is very socially impacting if children can’t eat the things that their friends do.”

Still, Dr. Spencer called the advice of the British food agency “sensible,” noting that some children may be “supersensitive to additives” just as some people are more sensitive to caffeine.

The Lancet study focused on a variety of food colorings and on sodium benzoate, a common preservative. The researchers note that removing this preservative from food could cause problems in itself by increasing spoilage. In the six-week trial, researchers gave a randomly selected group of several hundred 3-year-olds and of 8- and 9-year-olds drinks with additives — colors and sodium benzoate — that mimicked the mix in children’s drinks that are commercially available. The dose of additives consumed was equivalent to that in one or two servings of candy a day, the researchers said. Their diet was otherwise controlled to avoid other sources of the additives.

A control group was given an additive-free placebo drink that looked and tasted the same.

All of the children were evaluated for inattention and hyperactivity by parents, teachers (for school-age children) and through a computer test. Neither the researchers nor the subject knew which drink any of the children had consumed.

The researchers discovered that children in both age groups were significantly more hyperactive and that they had shorter attention spans if they had consumed the drink containing the additives. The study did not try to link specific consumption with specific behaviors. The study’s authors noted that other research suggested that the hyperactivity could increase in as little as an hour after artificial additives were consumed.

The Lancet study could not determine which of the additives caused the poor performances because all the children received a mix. “This was a very complicated study, and it will take an even more complicated study to figure out which components caused the effect,” Professor Stevenson said.

This quote was quite shocking: “Even if it shows some increase in hyperactivity, is it clinically significant and does it impact the child’s life?” said Dr. Thomas Spencer, a specialist in Pediatric Psychopharmacology at Massachusetts General Hospital. “Is it powerful enough that you want to ostracize your kid? It is very socially impacting if children can’t eat the things that their friends do.”

Hmm...Dr. Spencer must not be a father. Or someone that sees that our children need to be healthier, that's we got a crisis on our hands. When you think you've seen it all, I found this quote very surprising and disturbing. Smoking used to be (still is?) cool, does he think us parents should weigh the social pros and cons of that as well? I think we've come a long way with education and smoking. We need to do this with food as well. Food marketers will rise to the occasion and quickly provide what people are willing to buy.

We need to educate parents and schools about healthy food choices. After all, we now have a federal mandate, the Wellness Policy that should be enforced across the country now, beginning last year. Economics plays a role in how quickly and effectively change will happen. Health has a lot of competition - better roads, better curriculum, classroom facilities, the list goes on.

The biggest obstacle I used to think were parents unwilling to stand up and make healthier choices, letting go of Betty Crockerish childhood memories. Standing up to their own parents that give their kids candy every chance they get. Deciding to pay more than $2.50 for their child's school lunch, when they go and spend $8 to $10 on lunch themselves.

But yet again we must fight our pediatricians? I am beyond disgusted.

Who would've thought someone would be FOR additivies and preservatives?

On a personal note, my daughter Sydney experienced the cafeteria for the first time this year, as a fresh 1st grader. She did come home in tears the first few days, complaining that most of her friends bought lunch. She wanted to eat what everyone else ate. I can't blaim her and I empathize. I went through the same thing with Leo, and today he is confident and fine with it.

Some kids brought their lunch, but Sydney's food was different - leftover Mexican Shredded Chicken over brown rice, Pasta Salad with lots of veggies, or a turkey wrap. Real food with no additives or preservatives. Sydney eats like Leo does because it's healthier. Gluten isn't good for anyone.

I reminded Sydney what she knew already, processed food versus whole,organic, and how important healthy food is. She got it. I told her to explain what she's eating, that her lunch from home is healthier than the cafeteria. Most moms would have to agree in this town, and I do know that this isn't always the case....In many places across the country, school lunches and breakfasts are IT, the only food a child will get. How sad is that! I am indeed happy that we have these programs for those reasons.

I told Sydney to say "So?" if people make fun of her lunch. And to stand up for herself. A tall order I know, but she didn't take any crap. She's a confident girl, more than Leo, so I know she got her point across and she felt better about her "difference".

She's a popular girl, so guess what has happened the following week? Some of the girls started bringing THEIR lunch that contained fresh fruit and other items that Sydney had been bringing. Two other girls brought strawberries for classroom snack, just like Sydney. All 3 girls made it cool! Now why can't more parents advocate for these scenarios, making healthy food the food of choice, the cool food?

We went out for icecream the second day of school to celebrate. My point (hopefully) that she does get to have unhealthy food too. I don't want them to feel deprived. A delicate balance of what is everyday food and what is a treat. I'm wingin' it here, but so far things have worked out. I temporarily won the cafeteria battle, but lost the classroom battle - Syd's teacher uses chocolate as a reward. Candy candy candy! It never ends.

Food doesn't have to be the focus of all celebrations. At least junky food doesn't! There are many ways to celebrate birthdays and holidays without food. Here are some links for people that may be interested:
Alternatives to Food Rewards. Connecticut State Department of Education, 2004.
Classroom Party Ideas. University of California Cooperative Extension Ventura County.
Healthy Fundraising. Connecticut State Department of Education, 2005.
Let’s Party: Party Ideas for School and Home. West Virginia Department of Education, 1994.
Let’s Play: Innovative Games and Activities for Kids. West Virginia Department of Education,

Thursday, August 30, 2007


Is your child's backpack making the grade?

Thu Aug 30, 2:21 PM ET, Reuters

With a new school year underway, the American Physical Therapy Association (APTA) is reminding parents that wearing backpacks improperly or ones that are too heavy put children at increased risk for back injuries and muscle strain.

A recent study of backpack-carrying pre-K through 9th graders showed that unhealthy changes in posture are magnified if the backpack weighs more than 10 to 15 percent of the student's body weight. The APTA recommends that backpack loads be kept to this limit.

Physical therapist and APTA member Dr. Mary Ann Wilmarth warns in an APTA-issued statement that injury can occur when a child bearing an overloaded backpack resorts to arching the back, bending forward, twisting, or leaning to one side.

These changes in posture can lead to improper alignment of the spine. A backpack load that is too heavy also causes muscles to work harder, leading to strain and fatigue, and rendering the neck, shoulders, and back more vulnerable to injury.

College students are not immune to backpack-related injury; they too risk injury to their back when carrying overloaded backpacks and wearing them inappropriately, Wilmarth found in a recent study.

The APTA offers these tips for safe backpack use:

Use both straps. Slinging the backpack over only one shoulder using a single strap causes one side of the body to bear the brunt of the weight. By wearing two shoulder straps, the weight of the backpack is better distributed, which promotes better posture.

Wear the backpack over the strongest mid-back muscles. The backpack should rest evenly in the middle of the back near the child's center of gravity. Shoulder straps should be adjusted to allow the child to put on and take off the backpack with ease. Tighten the straps so that the backpack does not extend below the lower back.

In addition to lightening the load, the APTA suggests organizing the contents of the backpack by placing the heaviest items closest to the back.

They also favor ergonomically designed backpacks to enhance safety and comfort. Hip and chest belts are useful, as they help transfer some of the backpack weight from the back and shoulders to the hips and torso.

Wilmarth's studies suggest that backpacks with wheels are a good option for younger students who don't change classes or need to go up and down stairs frequently. However, there are precautions to take with "rolling backpacks" as well.

For example, the extended handle needs to be long enough so that the child is not forced to twist and bend, and that the wheels need to be sufficiently large so that the backpack doesn't shake or topple. For more on backpack safety, visit

I hear some parents buy their kids two sets of books. I don't get it. Why do they have to carry so much? 10 to 15 % body weight. Did we have this problem when we were kids? I can't remember...

Wednesday, August 29, 2007

Summer Misc, 8 yrs 10 mos.

I refuse to say school has started, because it sure still feels like summer here. No homework, the kids are still running around late at night, no activities until after labor day and beyond. Flip-flops and shorts are still being worn. But indeed, school has started. My 1st and 3rd grader have the same schedule - they go to the same school and get home at the same time, around 3:50pm. Hurray!

I can't confirm the disorder/disability count for 3rd grade as of yet, but I have confirmation that Leo's former arch-nemesis from 1st grade turned friend in 2nd grade is in Leo's class. He also happens to have ADD. There's one other boy that's quite a legend/handful that has a behavior plan as well. He's my favorite, and now is friends with Leo. I predict this relationship will move forward - they've never had class together. His mother is pretty much a normal person, inclusive, and honest.

So far, 3 kids in a class of 21. Leo didn't get his BFF in class, which was a giant bummer because we won't be able to socialize with him much this year. His sister, Sydney's BFF, is the one with Leukemia, so his social schedule and activities are limited to church. PDD Boy is still a close friend, but not in the same class. They'll see each other at baseball which is great.

Leo's teacher seems TGTBT (too good to be true). She energetic, maternal, smart, firm, and engaging. I even told her that she's TGTBT. After last year's mediocre one (at least in the personality/cheer leading dept), I'm pretty damned excited.

Very cute, Leo is even more excited about Sydney's teacher. His former from 1st grade. She's terrific, and I have little worries there. He thinks he's super cool because he 'knows just about everything' in regards to her class. On the first day, he made sure his sister got to her class, as her sense of direction and memory isn't her strong suit (she's just like me).

Leo's hypoglycemia has made a significant improvement over this summer's detox. Huge, I no longer have to pack an extra snack for him to eat in the afternoon - he can basically make it combined with lunch schedule getting later as he's getting older. I am slowly feeling like I am less like a mom with a diabetic child.

The other good news is that Leo seems basically fine on dairy. I've been really worried about the soy consumption in this house, especially since it's in all the processed GF foods, so I boldly decided to give Leo dairy regularly (translation=3x week), and the rest of the choices go to soy. So almost 50/50, splitting the difference of evilness. We still stick to GF, as it does seem to build up, but do 'cheat' for special occasions like a birthday...

Leo had a sleepover at the same boy's house from last year. It was awesome just like last year! We talked a lot about two boys that he doesn't like much that would be at the sleepover. We told him life isn't perfect, and even though these boys aren't that nice sometimes and aren't your favorites, you just have to go with the flow. I also said people change, especially kids, and that you have to give them a chance, they may surprise you. I reminded him about our neighbor, how they get along now. The greatest was I only had to pack enzymes! The mom gave them for pizza, and he declined cake. Simple! He had a total blast - this year they all played baseball and relays before a movie, popcorn, and other boy stuff. I was so happy for him.

To change the subject (Hey I can do anything, it's my blog!), I seem to always have an issue at school at the beginning of the year, and this year was no different. I found out through a friend that the PTA wants us to fill out detailed health related questions on a waiver for PTA events/activities. I asked the nurse and the principal about the legality with privacy. Of course, this touched a nerve with me because of vaccinations, allergies, and hidden diagnosis. Like I'd say jack about any of it! Can we all say Secret List? I get the waiver thing. Insurance is insurance, but do you think I'll trust these other moms with that info, when there's already an undercurrent of animosity towards "allergy kids" and the politics that go with it?

So there ya go. Haven't heard anything BUT the form was sent home sans waiver. I'll keep you posted.

Note to Self: Remember to blog about The China Study, my summer environment/health book.

Asthma and 5 to 11 Year Olds

New guidelines look hard at childhood asthma By Will Dunham
Wed Aug 29, 12:04 PM ET

New guidelines unveiled by U.S. federal health experts on Wednesday for tackling asthma carve out a new age group, children 5 to 11, for unique treatment.

Drugs known as inhaled corticosteroids remain the best long-term treatment to control asthma in all age groups, according to experts convened by the National Heart, Lung and Blood Institute, part of the National Institutes of Health.

The new guidelines -- the first thorough update in 10 years of U.S. recommendations on treating and diagnosing asthma -- gave special attention to the growing problem of childhood asthma. They also offered new advice on drugs and controlling environmental factors that may trigger symptoms.

Existing guidelines had called for children 5 to 11 to treated the same as adults.

The guidelines now specify three age groups to get different treatment for asthma: birth to 4 years, 5 to 11 and 12 and older.

The middle group was created due to new evidence on drugs for these children and emerging signs that they may respond differently to asthma medications than adults.

The recommendations point to newer drugs to help control the immune over-reaction seen in severe allergic asthma. Xolair, made by Genentech and Novartis, is a biotech drug that blocks the immune system compound immunoglobulin E, which is overproduced during an allergic asthma attack.

Known generically as omalizumab, Xolair is injected and approved only for people over the age of 12 with severe asthma.


Other drugs should be added only as needed and should be discontinued as soon as possible, the guidelines say.

"Although asthma is a common, chronic illness that can pose a serious burden for patients, their families and their communities, we firmly believe that asthma control can be achieved in nearly every patient with asthma," said Dr. William Busse, chairman of the University of Wisconsin Department of Medicine.

Busse, who headed the panel of 18 experts, said many studies supported the recommendations.

"For instance, inhaled corticosteroids are still the best long-term control treatment for asthma patients of all ages because we have even stronger evidence that they are generally safe and are the most effective medication at reducing inflammation, a key component of asthma," he told reporters in a telephone briefing.

Asthma is an inflammation of the airways. Symptoms can include wheezing, shortness or breath, coughing and chest tightness. More than 300 million people worldwide suffer from asthma -- 22 million in the United States alone.

The U.S. Centers for Disease Control and Prevention says asthma kills about 3,780 annually.

Inhaled corticosteroids include GlaxoSmithKline's Flovent and Advair, AstraZeneca's Pulmicort, Abbott's Azmacort, Teva Pharmaceuticals' Qvar and Schering-Plough's Asmanex.

Heck. I'm all for preventing deaths by using steroids and other medicine. Man, almost 3800 people die each year. My question always seems to be the same. Today or the future? What shall we invest in?

If it's special education in schools, we all know school districts have a difficult time with long term planning and investing, which over time costs less time and money. It's the same when it comes to wellness in this country.

Will there be a day when the government realizes that all of these ailments - childhood disorders/delays, allergies/asthma, neurological disorders like MS, and cancer are all related? That they all involve toxins and the effects of a centralized food supply for starters? We will soon be buying nuts that are pasteurized (those lucky enough to be able to still eat them).

Why don't we spend our tax money on causative factors rather than concentrating on blocking symptoms? At record profits I may add, to certain pharma cos. The payoff would be exponential, impacting so many aspects of health.

Saturday, August 25, 2007

To Do List for fall

Gearing up to fall...

1) WARNING: About to Overshare...

Manage my newfound facial hair (I'm 42). I'm "loving" my new hormone profile. I am a natural blonde, and this soft furry mustache has sort of snuck up on me. I wonder if people have noticed! I've begun plucking the obvious ones, and I have to figure out the pros and cons to waxing. At least it's blonde though. I have a few long hairs that pop up now and then on my chin, I call them my witch hairs. They freak me out! Advice needed!

2) Figure out how to make an income that will support the kids in the event that disaster strikes. I can't even type the scenarios I'm thinking of! A friend's husband, at 43, died suddenly, and I consider it a wake-up call. I need skills people! I had a career in marketing which was quite lucrative before kids, but I'm basically worthless in that field now. My teacher salary barely pays for food, so I'll have to think of something. I am studying homeopathy on my own, but that would be a long shot and years from now as something to support a family.

3) Continue my obsession with High Schools. For starters, I began perusing the Newsweek High School Ranker. The cool part of this, is that if you click on "state" or one of the other columns, one can see the info that way. I don't particularly agree with the criteria, but it's gotten me to start thinking about criteria that's important to US.

Do we move? If so, probably middle school. Will our current town be appropriate for Leo and Sydney as teenagers? Our town is quite conservative, religious (many Catholics live here and we aren't Catholic). I don't want them to feel left out - it's already hard enough to be that age. Perhaps a place exists where being an individual is easier. We need a bigger house anyway - we are growing out of it, and the kids will soon no longer be able to share a room....

Moving To Montana

Hi all. Our family has decided to "opt out" of society and move to Montana. We are purchasing a large piece of property, a hobby farm. Our goal is to eventually become subsistence farmers, living off the land while home schooling our children. I won't have to worry about grocery stores, school cliques, or job politics. We have some money saved up, and after we sell our valuables, we should have a healthy head start. JUST KIDDING! Did I get you or what?

But seriously, I do fantasize about doing something like that, especially when I have to make hard choices, social choices. My internal cost/benefit excel spreadsheet. I wonder if it's all worth it in order to live in society. What is your cost to living in society?

Friday, August 24, 2007

Sunscreen Rules

FDA Proposes New Rules for Sunscreens By Steven Reinberg
HealthDay Reporter
Thu Aug 23, 7:01 PM ET

THURSDAY, Aug. 23 (HealthDay News) -- The U.S. Food and Drug Administration (FDA) proposed Thursday a new rating system for sunscreens that would, for the first time, alert consumers as to how well they block dangerous ultraviolet A (UVA) rays.

Right now, most commercial sunscreens only screen out ultraviolet B (UVB), not UVA, which is associated with longer and more serious damage deep within the skin.

Labels would have up to four stars indicating their effectiveness against UVA rays, the FDA said. Both UVA and UVB increase skin cancer risks and skin aging.

The new changes are undergoing a 90-day period of public comment before being published in a final draft form. According to the agency, those rules would only go into effect 18 months later, pushing the appearance of any new labeling to 2009 at the earliest.

The agency has long been looking into making recommendations on UVA protection, Dr. Douglas C. Throckmorton, the deputy director of FDA's Center for Drug Evaluation and Research, said during a mid-afternoon teleconference. Only now has the agency settled on which tests it will accept for rating UVA protection, he said.

"We believe this proposed regulation does, in fact, provide sunscreen labeling that clearly communicates information related to UV protection," Matthew R. Holman, from the FDA's Office of Nonprescription Products, said during the teleconference.

Called "extra UVA protection," the new rating would be in addition to the SPF, or sun protection factor, already on sunscreens. SPF measures the effectiveness of the product in preventing sunburn from UVB rays.

UVB radiation causes sunburn, but UVA can damage skin tissue below the surface. "Both UVA and UVB cause skin cancer and aging such as wrinkles and sunspots," Holman said.

"FDA considers both UVB and UVA radiation protection equally important at this time, because scientific data demonstrates that both have harmful effects on the skin," the agency said.

The proposed ratings system for UVA sunscreens would rate them on a scale of one to four stars. One star for low UVA protection, two stars medium protection, three stars high protection, and four stars the highest protection available in an over-the-counter sunscreen. If a sunscreen does not have at least one star of protection, the agency would require that the product have a "no UVA protection" marking on the label near the SPF value.

Ratings for UVA would be based on two tests. The first measures the sunscreen's ability to reduce the amount of UVA radiation that passes through it. The second measures a product's ability to prevent tanning. This test is similar to the SPF test used to determine the effectiveness of sunscreens to block UVB rays, according to the FDA.

Sunscreens would carry a "Warnings" statement in the "Drug Facts" box. The warning will say that "UV exposure from the sun increases the risk of skin cancer, premature skin aging, and other skin damage. It is important to decrease UV exposure by limiting time in the sun, wearing protective clothing, and using a sunscreen."

In addition, the label would also warn that "UV exposure from the sun increases the risk of skin cancer, premature skin aging and other skin damage. It is important to decrease UV exposure by limiting time in the sun, wearing protective clothing and using a sunscreen." Directions would tell people to reapply sunscreen "at least every 2 hours."

The intent of the warning is to alert consumers that sunscreen is only a part of protecting yourself from sun exposure, Holman said.

According to the FDA, the proposal has guidelines for testing that manufacturers need to do to support their claims. Under the rule, sunscreens could have a maximum SPF of 50+ unless test data shows that a higher number is warranted.

In addition, the definition of SPF would change from "sun protection factor" to "sunburn protection factor." This change will prevent "the impression of solar invincibility and a false sense of security," according to the agency's proposal.

One expert thinks it's about time the FDA set standards for UVA protection.

"This is an important step forward," said Dr. James Spencer, a professor of clinical dermatology at Mount Sinai School of Medicine in New York City, who also is in private practice in St. Petersburg, Fla. "UVA protection is important for the prevention of skin cancer and wrinkles," he said.

In fact, Spencer would like to see the same star rating system proposed for UVA to replace the SPF number used for UVB.

This label changes were partly spurred by a report from a Washington, D.C.-based nonprofit, the Environmental Working Group, in June. The EWG faulted the FDA for missing a deadline imposed by Congress to set sunscreen safety standards by last year.

In their report, the group found that of 386 sunscreens with SPF ratings higher than 30, 13 percent protected users from UVA radiation.

You know, I just totally give up on this topic. Too much sun is bad. So is not enough sun, a far worse situation when you look at Vitamin D than most people realize. The stuff that works and is truly waterproof contain carcinogens and endocrine disrupters like the parabens. The HFS stuff smells good, but it just doesn't work!

Our 2007 strategy: sun shirts and hats whenever possible, wearing as little sunscreen as possible. After all, our kids must somehow excrete it. And we know our kids are famous for being bad at that (some that is, for those care about symantics).

When Leo was little, he used to refer to sunscreen as Sun Scream. It was too cute to correct.

Tuesday, August 21, 2007

As Autism Diagnoses Grow, So Do Number Of Fad Treatment

As Autism Diagnoses Grow, So Do Number Of Fad Treatments, Researchers Say
Science Daily — Ineffective or even dangerous fad treatments for autism, always a problem, seem to be growing more pervasive, according to researchers who studied the problem.

“Developmental disabilities like autism are a magnet for all kinds of unsupported or disproved therapies, and it has gotten worse as more children have been diagnosed with autism,” said James Mulick, professor of pediatrics and psychology at Ohio State University .”

“There's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”

Mulick chaired a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The symposium included presentations by several of Mulick's students at Ohio State who participated in a graduate seminar on fad treatments in autism.

Tracy Kettering, a doctoral student in special education at Ohio State , said a Google search for the phrase “autism treatment” yields more than 2.2 million matches.

“You get hundreds of different types of therapies that come up, and many have quotes from parents that claim a particular therapy ‘cured' their child,” Kettering said.

“It's no wonder that parents want to believe. But very few of these treatments have any evidence to support them.”

The number and range of fad treatments has seemed to grow in recent years as more children have been diagnosed with autism, said Mulick, who is also editor of a book on fad treatments called Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice.

Mulick said when he began treating autism in the 1970s about 3 children in 10,000 were said to have autism. Now, reports are 1 in 166 children have the condition. The number of cases has mushroomed because of better diagnoses, and a changing definition of autism that includes a broader range of disorders.

Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.

A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.

While many of these treatments have never been adequately studied, that doesn't mean they aren't promoted.

“One of the characteristics of fad treatments is that they are discussed in the media and on the internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.

And while some fads are simply ineffective, others can even be dangerous, Mulick said. Chelation therapy, which involves taking medicines to remove the heavy metal mercury from the body, has reportedly led to the death of at least one autistic boy receiving that treatment. Chelation therapy was also touted years ago as a new treatment against some forms of cancer but was eventually shown to have no helpful effect.

Many parents try multiple approaches, hoping at least one will help. Kettering said one survey she found suggests that the average parent of a child with autism has tried seven different therapies.

“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.”

Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.

For instance, most scientists believe that many cases of autism are caused by genetic mutations, and some mutations can be caused by various chemicals that we encounter in our everyday lives, Mulick said.

But still, there is no evidence that any particular chemical causes mutations that lead to autism, as some have claimed.

“There's a shred of truth in the rationale presented for some fad treatments, and that is enough for some people to go with,” he said.

Another reason that fad treatments persist has to do with the natural course of autism, Mulick said.

Autism, like many conditions, has cycles in which symptoms get worse and then get better. Parents tend to search for treatments when symptoms are getting worse, and when their children get better – as they do in the normal course of disease – parents credit the new therapy.

“It's natural to have this bias that the therapy you're trying has had some positive effect,” he said. “People want to believe.”

While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.

EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.

“It's expensive and difficult for many parents to use,” Mulick said. “That's got to be one reason other treatments look attractive to them.”

Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.

“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”

In addition to Mulick, Kettering and Snow, other presenters at the symposium included Ohio State graduate students Cristan Farmer, Megan Norris, Andrea Witwer and Jill Hollway.

Note: This story has been adapted from a news release issued by Ohio State University.

This article really pissed me off. I mean really! I mean, drop everything to sit and vent about it. All this "research" demonstrates is simply one thing, human nature. Why do people assume this would be different in the world of autism? A crazy and dangerous way to spend research money. I shudder to think about how much something like this cost, and how many programs deemed worthy by this team(ABA)could have paid for. A STATE school for crying out loud! (I'd like to point out that I'm not an ABA hater. ABA was a cornerstone to my son's recovery).

It's only natural for people to make a buck by taking advantage of a person that's vulnerable. Advertising 101 teaches marketers how to sell basic emotions; hope, inspiration, coolness, and many other false truths. Take a look at ANY advertising to see the same thing. Who doesn't know the saying "buyer beware"? Weight loss, home products, cars, hair loss, kitchen gadgets, detergent, and all kinds of gimmicks have infiltrated our lives, everywhere we turn. As a society, we've quietly accepted them, each person filtering out what they choose to filter out. Determining what's valid from what isn't.

Does this mean that all people serving the autism community are evil and only have profit margins on their minds? I don't think so. Many people end up in the world of Autism due to autism happening in their personal life. Many well-meaning doctors and therapists that are "on to something" cannot contain their excitement, and their passion gets the best of them when promoting their success. Everyone starts out with just a handful of successes. After all, who HASN'T gotten out-of-control when excited about something potentially big, really big.

This "research" shows us only one thing, that the topic of Autism is no different. There is only one internet that serves us all on ALL topics! Ohio State needs to spend their time on other topics, or really getting down to business with understanding the complex world of Autism. The GFCF diet has "gained favor"? Are you kidding me?

True, buyer beware is a reality in the world of Autism. Articles like this only does damage by confusing parents that are trying to help their children. Many parents read something like this, a lazy black and white article, and decide to not try all other treatments other than ABA. Where has Ohio State been? I mean really? Human being are shysters. Whatever!

What is crystal clear is that science has failed our children in numerous ways. Ohio State could do better than an effort such as this, a lame one-sided study that makes portrays parents like stupid sheep throwing their money left and right. This is an old, beaten path - the medical community versus parents and cutting edge alternative treatment providers.

I think most parents would agree it would be easier to defer to the medical community, but that's no longer possible. Most parents have no choice but to be at the helm of their child's health and therapy treatments. But look where that's gotten us? Has science figured out what causes Autism? At least one cause? Where would we be without treatments in their infancy? At one time ABA was, as well as any other scientifically backed treatment for a disorder or a disability.

The saddest part of all of this, is our future educators coming out of the Ohio State program. Hopefully they are learning about viable treatment options. I hope they learn that Autism is very complex with little rhyme or reason to "what works". Simply, there are numerous opportunities for success. They are in a very powerful position, and my hope is that parents are fully supported.

Saturday, August 18, 2007

Those Handy Non-Stick Pans

Non-stick chemical exposure tied to small babies
Fri Aug 17, 2:27 PM ET

Exposure of the developing fetus to certain polyfluoroalkyl compounds, which are used in non-stick cookware and for other applications, may reduce birth weight and size, according to a report in the July 31st online issue of Environmental Health Perspectives.

Still, the authors note that the risk conferred by such exposure appears to be small and they advise caution in interpreting the findings until they can be replicated in other groups.

Research in rodents has suggested that exposure to the chemicals perfluorooctane sulfonate (PFOS) and perfluorooctanoate (PFOA) harms development, senior author Dr. Lynn R. Goldman, from Johns Hopkins Bloomberg School of Public Health in Baltimore, and colleagues note. Whether this holds true in humans, however, was unclear.

To investigate, the researchers tested cord blood samples from 293 pregnant women for PFOA and PFOS and then examined the levels in relation to pregnancy outcomes.

In adjusted analyses, cord blood levels of both chemicals were inversely related to birth weight and head circumference.

Previous reports have shown that these chemicals can alter blood lipid levels, which could adversely affect fetal development, the authors note. However, in the present study, the association between PFOA and PFOS exposure and birth weight or size was independent of cord blood lipid levels.

Further research is needed to verify the findings and better understand if the relationship is causal, the authors conclude.

SOURCE: Environmental Health Perspectives 2007.

Ten years ago I got a lot of flack from my then fiance when I wanted to register for "regular" pots and pans, not the non-stick kind. I didn't think they were safe, and had read what they were made out of. It's no use to mention it to Hubbie. He'll just nod his head.

Today, I have one child with an ASD, but regular pans.

Today I have two friends that are pregnant. What should I share, if anything? Now that science has deemed this information worthy? When asked, what should I say about the toxin-free sunscreen I've been using all year? What should I say when my friend is considering vaccinating her infant, when her preschooler had a reaction to the MMR? (he lost some speech and had little eye contact for a few weeks, then spontaneously recovered to previous functioning level)

What will make me gain a friend or lose one?

One of many environmental exposures to duck and weave away from. Lead in toys, mercury in vaccines. So much to think about.

Thursday, August 16, 2007

Anniversary From Services

We've had a fairly uneventful end of the school year - Leo was sad but not upset like he was last year. His teacher said he's ready for 3rd grade! As always, it takes me by surprise. We continue to monitor...

June 22 was the anniversary of ending therapies three years ago. Pretty incredible to me. As always, I reflect upon the last year.

I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The others are friends from his regular local elementary school. Kid sister is nearby in the shallow end playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for dinner.

I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me tell you, ‘happy’ wasn’t a word we used to describe Leo.

Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she drove. He’s been to this camp before, but he attended without knowing any of the children. By the second day, he already belonged to a little group of three boys. He enthusiastically tells me about these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing today.” They talk on and on about school, speculating about what teacher they’ll get in the Fall.

I think about that intense year of aquatic OT when he was little. The one hour of driving each way, the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child. This seemed impossible since the initial goals were to address sensory defensiveness, vestibular and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and upper back. I was raised in Southern California on the beach, so I always had envisioned sharing my love of the ocean with my children. I think about Leo’s anxiety the night before each swim “lesson”, how he’d worry himself sick, rarely sleeping.

Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water. Pretty surreal.

I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the care of others. Being around other children would cause anxiety.

We went to visit my family/friends in California for 3 nice long weeks. It just gets easier and more fun as the kids get older. Traveling alone with my kids, I'm on alert per usual. I hold a common fear that many parents have, that our children will somehow get taken advantage of because of their innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social abilities were put to the test. A questionable character in the waiting area began talking to Leo, asking him personal questions. He protected himself. When asked what town he lived in, he said “I forgot”. He avoided eye contact with the man while boarding the plane by gazing at a nearby billboard, pretending to read about the arriving flights. He told me later that right away the guy seemed “creepy”. And he was right.

Am I an Autism parent? Yes. Has my life changed in 3 years? Yes and No. I don't have an impossibly giant schedule to manage and implement. I have similar fears and concerns, but they exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. We are still in debt although we are much better off financially than we once were.

Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.

I’m still angry though. Angry that I have more company, meaning more and more people I KNOW and more people I meet have Autism. I’m angry that the issues at hand years ago are still the same today.

Autism is part of who Leo is, and I love him and accept all of him as a whole. I can't separate the autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool. I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do anything. There are no barriers to his potential, and our reward is his success.

Friday, July 13, 2007

WSJ: What Is Normal?

WSJ: Study of Kids' Brains Hopes to Answer: What Is Normal?

Every parent knows that children have minds of their own, shaped by
growing brains that scientists can barely fathom. Researchers strain to tell
symptoms of neural disorder from the natural variations of young brains,
almost infinite in their possibilities.
This summer, brain experts funded by the National Institutes of Health
are finishing the largest systematic clinical study ever of the neurobiology
of youth. In a $30 million project, researchers in six cities have been
combining brain scans, psychological profiles, medical exams and
intelligence tests gathered from hundreds of healthy children to answer a
fundamental question about brain development that nags parents and pediatric
practitioners alike: What is normal? When completed, this NIH brain archive
promises to become the first clinical benchmark by which normal development
can be judged, matching behavior to brain anatomy from birth through
adolescence. With it, specialists should be able to understand better
problems such as autism, in which neural miscues undermine the mind.
Educators bedeviled by child-rearing fads and untested teaching theories
should be able to match alterations in brain structure to the rise and fall
of learning skills. "Once we know the map, we can tell what nudges the brain
for good or ill," said NIH brain imaging expert Jay Giedd.
By any standard, every child's brain is an experiment.
From a single cell in the womb, it swells at such speed -- 250,000
cells a minute -- that by early childhood it has more neurons and nerves
connecting them than do any older, wiser adults. It is buffeted by
tumultuous bursts of growth that prime it for mastering new skills and ways
of thinking. Yet, so little is certain about how it changes throughout
childhood that scientists don't know what ought to be expected, said Cornell
University expert B.J. Casey, who helped pioneer brain imaging in children.
Not only is every new brain different from any other, but the
variations within each one as it adapts, swells and contracts confound
analysis. "A developing brain looks weird," said pediatric neurologist
Katrina Gwinn at the National Institute of Neurological Disorders and
Stroke, who directs the NIH project. "Something that might be normal in an
adult might look abnormal in a child."
Until recently, little was known about how normal human brains change
as they grow because conventional medical imaging techniques were too
dangerous or invasive to be used with any but the sickest children. The NIH
survey takes advantage of newer techniques benign enough that infants can
safely nap inside while their brain cells are bombarded with magnetic
Seeking as broad a measure of childhood as possible, research teams in
Boston, Philadelphia, Cincinnati, St. Louis, Los Angeles and Houston
selected 385 girls and boys from among 35,000 families to ensure that the
data would reflect the country's racial, ethnic and economic diversity. "So
many studies are done only with white kids from suburban areas," said Dr.
Gwinn. "We worked hard to get different demographics."
Researchers even sought the proper mix of right- and left-handers. The
children, between six and 18 years old, were screened to ensure they were
free of illness, genetic predispositions, prenatal risk factors, toxic
environmental exposures or chronic health problems that might affect their
brains. "These are really healthy brains," said project researcher Deborah
Waber at Children's Hospital Boston. Newborns have since been included in
the study.
The children were scanned periodically using three techniques:
structural magnetic resonance imaging to catch changes in the brain's gray
matter, which contains neurons; diffusion tensor imaging to monitor its
white matter of connecting nerve fibers; and magnetic resonance spectroscopy
to track the ups and downs of brain chemistry. To match changes in brain
anatomy to mental abilities, the youngsters also regularly took tests of IQ,
dexterity, spatial ability, memory and cognitive skills. "So we are actually
able to follow individual children and look at snapshots of the same brain
over time," said Dr. Waber.
In its essence, this biomedical mosaic is a national portrait of the
child mind.
It reveals that gender differences and income disparities matter less
than previously believed and that health matters more, project researchers
reported recently in the Journal of the International Neuropsychological
Healthy girls and boys do equally well on most cognitive tasks. Boys
perform better at analyzing and manipulating shapes and patterns, while
girls perform better on processing speed and motor dexterity. No differences
were measured in calculation ability, suggesting boys and girls have an
equal aptitude for math. By age 12, many children are as proficient as
adults by most measures of mental performance.
These unusually fit, diverse children outperformed all those in
previous research on tests that measured IQ, memory, reading and math
ability, and development of social skills.
It may be years before the findings have been fully analyzed and
applied. Until then, the NIH brain project, like the children it documents,
is a promise of things to come.
Now don't get too excited. You know what's going to happen don't you? They'll complete this giant expensive study, interpret it themselves, and not share the data. That way they can paternally share their sweeping generalizations that benefit the government's interests and back past decisions. They can spin on the data they need to keep us parents under control at their leisure. Just like they've done with the vaccine data. You just watch.