Tuesday, March 31, 2009
Friday, March 27, 2009
Two articles in one week should shake parents of kids with autism, Asperger's and ADHD who are on powerful meds to their core. In the first, we learn that Harvard Psychiatrist Dr. Joseph Biederman promised postitive results to Johnson & Johnson in risperidone testing. (HERE). From the NYT: An influential Harvard child psychiatrist told the drug giant Johnson & Johnson that planned studies of its medicines in children would yield results benefiting the company, according to court documents dating over several years that the psychiatrist wants sealed.
The psychiatrist, Dr. Joseph Biederman, outlined plans to test Johnson & Johnson’s drugs in presentations to company executives. One slide referred to a proposed trial in preschool children of risperidone, an antipsychotic drug made by the drug company. The trial, the slide stated, “will support the safety and effectiveness of risperidone in this age group.”
In the second from the Washington Post (HERE) we learn that ADHD drugs may not work beyond 24 months and - and that this information has been withheld from parents. New data from a large federal study have reignited a debate over the effectiveness of long-term drug treatment of children with hyperactivity or attention-deficit disorder, and have drawn accusations that some members of the research team have sought to play down evidence that medications do little good beyond 24 months.The study also indicated that long-term use of the drugs can stunt children's growth. The latest data paint a very different picture than the study's positive initial results, reported in 1999.
The mainstream media turns to published studies to choose how to write about autism, Asperger's and ADHD. Pharma uses them to convince doctors what to prescribe. How many children are on risperidone, whch has the trade name Risperdal? Check out the black box warning (HERE). Our elderly are now drugged to smithereens on this product too. Get 'em young! Get 'em old! Drug from birth until they're cold!
Millions of kids have been drugged since they were tots with unproven drugs. But we're the crazies for giving our kids magnesium and fish oil? Where's the outcry? One child dies from a medical error involving chelation and the media pounces on the story. This Haaavud doctor has singlehandedly turned American children in zombies and monsters. Listen to the crickets chirp.
As far as the ADHD drug problems; think of how many American boys and girls are on these drugs for years and years, their parents unaware that the manufacturers knew their efficacy was limited and yet, demanded more market share. And doctors were complicit. It's astounding. I think the DARE program might need to include legally prescribed drugs. Just say no.
Thursday, March 26, 2009
Tonight the kids ate the following mistake. Necessity IS the mother of invention. I was going to make soup. Mark and I went to Trader Joe's - we were like old people on social security check day where the husband shuffles after the wife examing every can of creamed corn on the shelf while she yells, "Irv will you hurry up?! I'm going to miss the Price is Right!"
While at Trader Joe's, I bough a $3.00 tub of MirePoix - that's French for cut up carrots, onions and celery - soup, gravy or stock starter. If they called it cut up veggies it would only cost $2. You pay more for French. I bought a box of organic chicken broth for $2.00. I had a Trader Joe's brown rice packet in the freezer so I call that free.
I sweated the MirePoix in olive oil for 10 minutes (low heat, cook but don't brown.) I added the broth. I cooked the veggies for a long time while I forgot I was cooking the veggies. The broth all went bye bye. Uh oh. I added a cup of water and the cooked brown rice separately. Added it to the pot.
Voila, veggie stewish stuff that tasted good. GFCF. Healthy. Under $6 total for 3 kids' dinner and my own late lunch.
Eat your heart out Rachel Ray.
Tuesday, March 24, 2009
I'm proud to announce a milestone. My youngest just took her sweet self into the bathroom and pooped in the toilet sans my help! Ok, she forgot to lift the lid - but that's a LOT of motor planning and I don't care about that. When I went into the bathroom she was looking at me as if to say, "I know this is almost right, Mom." I lifted the lid and she commenced to complete.
Yeah yeah yeah yeah yeah yeah another step on the road to independence!
Sunday, March 22, 2009
You're Slip is Showing! It was like something out of Special Olympics. You're so gay!
Last week our President let it slip that he compared his own bowling skills (abysmal) to the Special Olympics. The point being of course, that he was worse. Instead of being self-deprecating, which was his intent, it came across as a slur. Why?
There are still a few words that trip off the tongues of people who would never utter "nigger" or "kike" or "polack." It seems that special needs people, gay people and females are still subject to terms that are slurs hidden in humor.
I doubt the President meant to trash the Special Olympics, but really, how could that so easily come out of his mouth?
Thursday, March 19, 2009
Ask Merck to Return the Individual M/M/R vaccines to the market.
Merck has stopped making individual (monovalent) Measles, Mumps and Rubella shots. So now, your only choice for your child is the full MMR as a 3 in 1 shot. This will discourage many parents from vaccinating their children.
From our friends at New Jersey Coalition for Vaccination Choice:
Merck is receiving hundreds of phone calls from concerned parents who question the vaccine maker’s recent decision to stop making the individual (“monovalent”) measles, mumps and rubella vaccines. Let’s really get their attention. Starting today, join us in a focused campaign to send to Merck a strong message from parents across the country and all over the world. Below you’ll find a sample letter which outlines our key reasons why Merck must resume manufacturing the monovalent vaccines. You can use this letter as-is or edit any part of it. If you have time, please complete steps #1 through 4:
1) Send the letter to: Mr. Richard T. Clark, CEO, Merck & Company, One Merck Drive PO Box 100, Whitehouse Station, NJ 08889-0100
2) Fax the same letter to 908-735-1244 (back up fax 908-735-1500 or 215-993-1220)
3) E-mail the same letter to Richard_clark@merck.com and copy vaxRSVP@verizon.net
4) Call them and deliver the message in person: 908-423-1000 and ask for the office of the CEO (back up number (800) 672-6372, press 2, then press 3)
Make the contact with Merck and we’ll report back to let you know what we’re hearing. We also know that parents are searching high and low, traveling the globe and spending thousands of dollars to locate the individual vaccines. Send your “Finding M, M and R” stories to vaxRSVP@verizon.net.
Thank you! The sample letter is (HERE).
Wednesday, March 18, 2009
Here was my response to Mr. McNeil – he used Age of Autism as his source but did not quote or credit us, in his effort to discredit JB Handley. The bias in the Times is non-stop. We’ve covered the Somali question extensively at Age of Autism. David Kirby went to Minneapolis to meet with families – their children are falling to autism at an alarming rate. These are kids of educated people – not poor immigrants. They deserve better than a “fluke” write off.
Good morning, Mr. McNeil. In your article on the Somali autism spike, you mention an anti-vaccine conference. I believe you were referring to Autism One. Here is the agenda for the conference, which covers everything from education, to legal issues, to adult care options to treatment. You tarred a valuable learning opportunity with a very narrow brush. Perhaps you can attend Autism One in Chicago, meet the parents and providers and realize we are not anti-vaccine zealots, any more than parents in MADD are in favor of alcohol prohibition.
Kim Stagliano, Managing Editor of Age of Autism, the site from which you took JB’s information and mother of 3 girls with autism. Mia, Gianna and Bella. They are human beings. Not statistics, sir.
From www.autismone.org. (The Entire Agenda followed.) Here's a bit of the Times article. I won't link them. Not giving them the clicks.
March 17, 2009An Outbreak of Autism, or a Statistical Fluke? By DONALD G. McNEIL Jr.MINNEAPOLIS — Ayub Abdi is a cute 5-year-old with a smile that might be called shy if not for the empty look in his eyes. He does not speak. When he was 2, he could say “Dad,” “Mom,” “give me” and “need water,” but he has lost all that. He does scream and spit, and he moans a loud “Unnnnh! Unnnnh!” when he is unhappy. At night he pounds the walls for hours, which led to his family’s eviction from their last apartment. As he is strapped into his seat in the bus that takes him to special education class, it is hard not to notice that there is only one other child inside, and he too is a son of Somali immigrants. “I know 10 guys whose kids have autism,” said Ayub’s father, Abdirisak Jama, a 39-year-old security guard. “They are all looking for help.” Autism is terrifying the community of Somali immigrants in Minneapolis, and some pediatricians and educators have joined parents in raising the alarm. But public health experts say it is hard to tell whether the apparent surge of cases is an actual outbreak, with a cause that can be addressed, or just a statistical fluke....
Monday, March 16, 2009
Friday, March 13, 2009
Reader Meredith asked for some Easter treat ideas for kids on special diets. My favorite place is The Chocolate Emporium in Cleveland, Ohio. They feature treats for all major holidays, with a specialty in Jewish holidays and events like bar/bat mitzvahs. Check out their EASTER CANDY!
Win Leeann Whiffen's A Child's Journey Out of Autism from Sourcebooks!
It's contest day at Age of Autism! Please click over to A of A to enter this contest: http://tiny.cc/lZezr
Win a copy of Sourcebooks' new release by author Leeann Whiffen: A Child's Journey out of Autism. Visit LeeAnn's website to read more and to buy the book HERE. Sourcebooks has generously donated FIVE books to the contest!
From the publisher:
Told with the intensity of a medical thriller, the extraordinary story of how Clay Whiffen and his family conquered autism.
When Clay Whiffen was diagnosed on the autism spectrum, his parents didn't know where to turn. They refused to believe that he could not be cured, and began to try every therapy they could afford - and many they couldn't.
Frantically they worked, knowing that Clay slipped further away every day. When intensive medical testing revealed that Clay no longer fit the criteria for any condition on the autism spectrum, the Whiffens' wildest dreams were realized. Clay had conquered autism.
Written by Clay's mother, with a foreword by autism specialist Dr. Bryan Jepson, A Child's Journey out of Autism spells out what treatments worked, where the family found help, and how they made it through this crushing crisis. In a time of despair and confusion - when another child is diagnosed with autism every 20 minutes - this is a profound, proven message of hope for anyone whose life is touched by the disorder.
PRAISE FOR A CHILD'S JOURNEY OUT OF AUTISM
"Leeann Whiffen's fight for her son is a poignant, intimate story of perseverance and love - a reminder to all of us that a mother is the greatest ally a child with autism will ever have. A Child's Journey out of Autism shines a heartfelt light on a future of healing and hope."
Jenny McCarthy, author of Mother Warriors and Louder than Words
"I have heard so many stories like Clay's that I thought I could no longer be moved by them; I was wrong. This is an important book to read if your family has not been touched by autism, because it's important to understand the disorder that has affected so many all over the world. If someone you love is on the autism spectrum, read it because it will allow you to see that autism is treatable. While not all children make a complete recovery, improvements in their quality of life are possible at any age. I strongly recommend this moving and intelligent book."
Jane Johnson, Executive Director, Defeat Autism Now!
"This uplifting and positive book gives parents of newly-diagnosed children hope for the future. There is no easy fix or magic bullet for recovering a child from autism, but as Leeann so skillfully shows us, with perseverance and determination, the possibilities and rewards are endless. Thank you, Leeann, for sharing your story and empowering parents to make that journey to rediscover their child."
Chantal Sicile-Kira, author of Autism Life Skills, Adolescents on the Autism Spectrum, and Autism Spectrum Disorders.
"Leeann Whiffen takes the reader onto the rollercoaster ride that is autism from the first chapter to the last. A Child's Journey Out of Autism is field guide on how an average family can grow in love as they take on autism, refusing to accept the mainstream doom and gloom pronouncement that there is no hope or treatment. This is an important, really powerful book. If you know a child with autism, read this book for them."
Kim Stagliano, Managing Editor, Age of Autism, and mother of three girls with autism
"The journey from diagnosis to recovery is filled with obstacles and setbacks. The financial and emotional burdens families endure are heartbreaking. Yet, like the Whiffen family demonstrates, there is power in hope and determination. Parents like Leeann and Sean demonstrate that autism doesn't have to be a lifelong struggle… With effective treatments, a supportive network, and unwavering parents, recovery is indeed possible… Leeann's determination, drive, and hope are inspirational. Her story is unique, yet it mirrors what so many families encounter, the stress of inadequate funding options, the frustration of misdiagnosis, the confusion associated with learning about the best treatments. Her ability to tell her story with heart mixed with concrete information will no doubt help many families."
Doreen Granpeesheh, PhD, BCBA, founder and executive director, The Center for Autism & Related Disorders, Inc. (CARD)
"The Autism club is not one that we choose to join. Sadly, many of us are welcomed to this club by medical professionals who offer little hope for our children. But as the Whiffen family and thousands of others have discovered, our children can get better and in many cases, even recover from Autism. In A Child's Journey out of Autism, Leeann Whiffen welcomes us to the club with the gift of hope. This book is a must-read for parents with a newly diagnosed child with autism."
Wendy Fournier, president, National Autism Association
Sunday, March 08, 2009
I'm too lazy to post a photo - so just picture small, round chocolate cookies. About 100 of them (oops, crunch, make that 99.)
My girls eat a gluten free/casein free diet. That means no wheat/no dairy. No oreos... It's a sad existence. And an expensive one. GFCF foods are damn pricey. I'm constantly trying to find ways to make foods we like less expensively than the store bought version. I love to bake and cook - so it's kind of fun. And since Bella has had a bee the size of Godzilla in her bonnet for weeks and is ONLY happy sitting on the kitchen counter, I've had plenty of baking time.
Today I took a bag of Namaste brand chocolate cake mix and turned it into cookies. Crunchy, delicious cookies. Here's the recipe:
1 bag of Namaste chocolate cake GFCFSFnutfreewhatthehellisactuallyinthebag mix
3/4 cup coconut oil (melt it, coconut oil is high in healthy mid chain fats)
1/4 cup flax seeds
1/2 cup Bob's Red Mill unsweetened unsulphured, no sulfit coconut
2 large eggs
Water, only to moisten as needed to dough consistency
Mix everything with a hand or stand mixer. Roll into tiny balls - just larger than a marble - for 'Nilla wafer size - bigger balls for larger size cookies.
Place on parchment paper on cookie sheet.
Bake at 350. 10 minutes for small balls. 13 minutes for larger.
To make "crinkle cookies" roll the balls in powdered sugar (assuming you can tolerate corn) before baking.
Makes over 100 small cookies. Enjoy!
Thursday, March 05, 2009
We attend CCD on Thursday nights. That's catechism classes for Catholic kids. Bella makes her First Holy Communion this Spring! We returned from Church School at 7:40pm. I changed Bella into her PJ's, brushed her teeth and tucked her into bed. Mia and Gianna scrambled into their PJ's (Gianna fully independently I might add) and then took care of the toilet, the teeth and off to bed they went.
Bella's door opened. She walked up to me. I saw "hungry eyes." She vocalized, "Ah Wan" which means "I want." I knew she'd be a bit hungry - she ate dinner around 5:00pm.
I took her into the kitchen where I had chicken salad with GF macaroni and homemade chicken soup in the fridge. And a warm loaf of fresh baked GF bread on the counter.
I fed my child. I fed my hungry child.
Many mothers around the world, and even around the block, can not feed their hungry children and extra meal or a snack. That struck me hard as Bella crawled into bed, grabbed her yellow blankie and curled up into a contented, sated ball.
I can feed my children. I have no worries.
Find a local soup kitchen. Go to SECOND HARVEST and learn how you can make a difference. Donate your time. Donate some money. There are Moms who need you.
Wednesday, March 04, 2009
My friend John Robison has the kind of thoughtful post we've come to expect from him. It's about the economy, the sharp changes in his own life and the American dream and what i might mean for all of us. If you're in a thoughtful mood, I encourage you to read it. HERE.
Monday, March 02, 2009
THIS IS AUTISM. It's heartache. And so we fight. And will NEVER give up. Teresa is a Warrior Mom and she takes a lot of grief from the idiots in the wackosphere for her work on behalf of her daughter. Screw them. Our kids are worth treating. Period.
By Teresa Conrick
Sixteen years ago today, I gave birth to a beautiful and healthy daughter. Life was good and I was grateful --- but that was not to last.
In the Spring of her second year, my daughter, Megan, began to change. It was subtle things at first, shyness and lack of eye contact but that then spiraled into her losing the ability to speak and understand speech, develop extreme sound sensitivity, refusal to eat many foods while beginning to have bouts of diarrhea and reflux, and not wanting any human contact---including mine. Her tiny and sweet voice saying, "bubbles", "cookie", "cake", vanished. My memory of this loss is encapsulated in a backyard bubble blowing afternoon when my Meg, no longer smiling or laughing, could not name those transparent circles. Her word for "bubble" became "emul" and she would say it over and over and over some more. She also began to have a compulsive need to carry two letters from the magnetic alphabet board, one in each hand, constantly. I knew something was very wrong and feared it was going to be devastating news. I was about to be right.
Working in a psychiatric hospital as a special education teacher was probably the worst place to be employed as I was learning my sweet child had autism. The days of the so wrongly accused, refrigerator mothers were not officially over yet and a cloud of shame began to follow me. The renowned neurologist whom we met with made his diagnosis based on a 20 minute observation. His parting words, "Try putting her in a nursery school as being around "normal" children may help her", showed just how dormant the science of autism was in 1995. I did enroll Meg in school but it was a special education program where all the children had some special needs issue. Meg though, stood out from all of the other children, and the team of teachers and therapists knew very little about autism or what actually to do to help my poor, lost child.
Over the years as autism has gone from an obscure, orphan diagnosis to the fastest growing special ed classification in every state school system, I have learned much about autism and Megan. It is often by looking back historically that pieces come together, that the dots connect. A prime example are the symptoms that Megan exhibited. Not one professional back then delved into why my child stopped eating, stopped talking, stopped wanting human contact, and stopped progressing as a 2-year-old. "Autism" was the answer to it all but the science and research now shows those symptoms to be the result of the true nature of her condition, a neuro-behavioral-gut-brain-illness, not co-morbid but the roots to the devastation of normal functioning. Thank you Dr. Rimland/Autism Research Institute, Dr. Wakefield, and DAN! (Defeat Autism Now), for researching and treating this complex and historically misunderstood illness.
In 2000, I first went on-line and my life forever changed. Megan had begun to exhibit bizarre and worsening behaviors. She began to hit and bite those around her, rip up paper everywhere, throw breakable glasses onto the ceramic floors, and dump gallon containers of milk and soap on the carpet. She had no language now and I was losing her more each day. The worst though were horrible, loose and smelly stools that she would often leave all over her bedroom. I needed help desperately but there was no one, including our pediatrician, who knew what to do except suggest behavioral interventions. We had already done 2 years of ABA in our home and Megan had currently started in a wonderful school for children with autism. None of that could make the horrible stools, pain, and lack of sleep better. On the internet I met parents who had the same stories, same symptoms, and same teams of professionals who could not answer why their children were so sick. A metamorphosis was happening as parents began to research medical literature, explore environmental sources, gather and report on data and labs, form organizations and internet groups, plan and attend conferences, educate their politicians, reach out to the media, and start meaningful and hopeful website blogs to change the history and future of autism (thank you, AOA!). A very big piece was emerging. A piece that overlapped from anecdotal family stories, to labs, to research, to a need for more research -- and that piece was vaccines.
Looking back at those confusing and "autistic" symptoms that Megan began to show in 1995 with the knowledge of 2009 is both helpful and heartbreaking. We now know that Megan and many other children have mitochondria issues/defects in oxidative phosphorylation, which can be a genetic issue worsened by vaccination or brought on by that very process causing a regression of functioning; zero or low levels of glutathione that make excretion of lead, mercury, and aluminum almost nonexistent (the toxic metals most seen in our kids and the two latter ones are found in vaccines though thimerosal has been decreased in recent years, it was in high amounts in most of the vaccines for Megan and her peers in the 1990's), as well as increasing mercury levels in the environment; visual/auditory/touch/taste/vestibular dysfunction are symptoms of poisoning, ie toxins such as mercury, lead and aluminum as well as bacteria and viruses (again, the two latter ones are found not only in the environment but in vaccines, too); chronic inflammation in both gut and brain due to the immune system not working properly -- ie, microglial activation (bacteria, viruses, metals), inflammatory bowel disease (an association between the presence of measles virus and gut pathology in children with developmental disorders, ie a new form of inflammatory bowel disease - ileocolonic lymphonodular hyperplasia ); impaired intestinal permeability ie-"leaky gut", reflux, gastritis, candida and clostridia overgrowth. All of these can produce pain and that is the one symptom that Megan had pervasively for years until we began to see a light at the end of the long and torturous tunnel -- biomedical treatments.
As the year 2000 became unbearable, I searched the internet trying to find what to do for Megan. I discovered a nearby doctor who had been trained to help children with autism. Through urine, blood, and allergy testing, he saw that Megan had many things not right with her. She had huge reactions with gluten, casein, and other foods, and even bigger issues with gut parasites, yeast, bacteria, and heavy metals. Eliminating the offending foods, removing the bacteria and yeast while supplementing her nutrient-starved body brought decreased behaviors -- the pain was dissipating. Her stool began to normalize as there were less and less of them with the notorious undigested foods present. It was at that time that I learned about thimerosal and the many vaccines that Megan had with it. I also went through her health history with this new doctor and cried as I saw how she became progressively sicker after each vaccine: ear infections, antibiotics, mysterious rashes especially after her MMR, fevers for weeks (though now she rarely runs a fever), horrible nosebleeds, reflux/vomiting and then the start of the green and chronic diarrhea. As those early years of treatment progressed, Megan was finally able to use the toilet. A gluten-casein-soy and corn free diet, digestive enzymes, and supplements were key. She was nine and just coming out of diapers but regardless of her age, it was a huge success. .
At age 16, Megan is still nonverbal. Her place on the autism spectrum is on the very impaired side. She is though, able to communicate her wants with a talking device, express love when not too overwhelmed, and is happy more than not though a recent eating episode of wheat and soy in an accidental exposure put her back in pain, reflux, diarrhea, irritability, poor sleep, self-injurious behavior (biting her wrist) and a deja vu of what life was like before science and autism met. Our current knowledge of what can reduce pain and increase functioning --detoxification, diet interventions, reduction of inflammation-- is the road to healing for many and to others, recovery from autism completely. But for some like Megan, who began the biomedical road later as it was not yet ready when she was young, or those who are possibly more injured and more susceptible, there are still biomedical pieces that need to be explored to make their healing complete. High strep levels in her gut and blood two years ago showed us why Megan began to have tics, repetitive movements very similar to Parkinson's and also to Tourette's, with acute, obsessive-compulsive behavior. Treating it biomedically brought those blood levels to normal and eliminated the bacteria in her stool (gut). All behaviors lessened then disappeared and shows how the DAN! approach can help these children, especially when antibiotics cannot be used or only temporarily kill the bacteria. Thank you, Dr. Usman for researching and treating Megan in the special way that you do as her physical and vocal tics were so debilitating! This is the type of research needed, metals, bacteria and viruses, as well as a study of children who were vaccinated compared to those who were not.
I am grateful for all who continue to contribute to Megan's improvements in health and functioning and to my own healing from the depths of despair. Megan still has a long way to go but we are on the right path and for that I celebrate her birth, her life, and all of you who are with us on the journey.
"Remember Red, hope is a good thing, maybe the best of things, and no good thing ever dies." ---Shawshank Redemption
Teresa Conrick has two beautiful daughters. When she is not teaching, she is researching the biomedical implications of autism, both past and present.