Doctor Dad

Dr. Bryan Jepson is a father to a child with autism. It saddens me that it took the reality of this disease being injected directly into the lives & homes of doctors & scientists to force some of them to look beyond what the medical establishment was telling them to believe...but I am ever so grateful that physicians such as Dr. Jepson have taken the biomedical ball and run with it.

He dicusses his journey here: http://www.thoughtfulhouse.org/bjepson1.htm

Prior to autism, Dr. Jepson was a board certified emergency medicine doc.When his son was diagnosed, he quickly began to see that the paradigm to which the majority of doctors subscribe is faulty. He now treats children through Thoughtful House in Austin. In addition, he has written the book Changing the Course of Autism, which is a fabulous book to take to your pediatrician (I did!). The book backs up its assertions with science- and LOTS of it.

You can order it at this link:
http://www.thoughtfulhouse.org/pr/jepson_book.htm

In his talk, he discredited some of the lame explanations for the current epidemic we now face. He showed that there is indeed an epidemic, and that it is NOT due to changed diagnostic criteria. In 1994, the DSM criteria were actually NARROWED rather than broadened! Some have also argued that autistic children may have previously been misclassified. A MIND Institute study appears to debunk this claim. At the claim that maybe physicians now may be more skilled at diagnosing autism, there was audible laughter in the audience of parents, because those of us who have been through this know that is quite a laughable assertion.
Numbers are rising all over he world, and we do not even know our own current rates. The 1 in 150 statistic we hear batted around was from kids born '92-'94.
Dr. Jepson then laid out the evidence that autism is an autoimmune, inflammatory illness. The gut is a primary source of the problems these children face.
He also discussed the role of thimerosal, and discussed the fallacy of relying on epidemiology for answers. Mercury IS known to cause some of the negative physical changes we've observed in these children such as autoimmune reactions, immune suppression, and inhibition of the methylation cycle & glutathione production. His hypothesis seems to mirror my own- these kids may have had a prediposition & other toxic exposures, but adding mercury to he mix SURE DIDN'T HELP!
He finished by discussing the good news- autism IS treatable. It boils down to 1)treating deficiencies, 2)getting rid of what is causing harm, 3)breaking the inflammatory cycle, and
4)rebalancing neurotransmitters. I urge you to click on the power point presentation link to the right of this blog to get more details on the treatment aspect.

Here also is another presentation of his:
http://www.thoughtfulhouse.org/0405-conf-bjepson.htm

And by the way, I must admit frankly that it took autism being injected into my home for me to open my own eyes. I wish I could say I would be fighting the injustice of a generation of poisoned children just because I saw what was happening. But here I am with you, Dr. Jepson. And I am proud to stand beside every person who is trying to save these children and prevent more cases. Onward.

Oxidative Stress Research from Dr. Jill James

I have heard Dr. James speak twice now, and while the subject matter is high-level science and has a very real tendency to make my head spin, the conclusions are fascinating. I feel privileged to have Jill James residing here in Arkansas, because not only has she done some brilliant and helpful research, she works tirelessly to help our children. She is currently seeking to begin an Autism Resource Center in Little Rock.

On to the take-home points of her research: These children have reduced methylation capacity, and glutathione cannot be adequately synthesized. Oxidative stress is increased in these children. She stresses that it is undetermined as to whether these biomarkers are present all along or are a consequence of autism. I think one of the most important findings of her most recent research is that "autistic children may be genetically more sensitive to pro-oxidant environmental exposures". Guess what she used to prove this with cell lines? Thimerosal.
Additional information she happened to find was that we as parents(moms in particular) seem to have risk factors. As in the case of our children, we are unsure at this time which of these results may be due to autism (in our case the stress of having a child with autism) or whether they are predictive...in any case, she highly recommends that we get our homocysteine levels checked. In addition, we also seem to have some of the same methylation cycle & detox issues as our children. Hopefully more research on these important topics will follow.
On another note unrelated to her talk, Dr. James has been working tirelessly to create an Autism Resource Center in Little Rock. As a baby step towards this goal, our Children's Hospital has become part of Autism Speaks' Autism Treatment Network, or ATN. Her goal is to have a "one-stop shop" where parents will have all resources available at their disposal, and a team of doctors...who have a clue:) Here is AR, we have an abundance of cluelessness and outright hostility towards biomedical from the medical establishment, as well as a full-on love affair with vaccines. I applaud Dr. James and the parents working with her as they attempt to turn the mighty river.

Beautiful Son is Beautiful

Huh? Is the title a typo? Not at all. The documentary Beautiful Son was shown to us on Friday night at the conference, and we were fortunate to have the producer (and father of that beautiful son)- Don King- there at the conference. Please go to the website http://www.beautifulson.com/ to see more. In addition to being producer and dad to Beau, here is more about Don, from the site:

Don King: Director, Cinematographer
Don King has been making waves in Hollywood for years. He is best known for his underwater cinematography and second unit D.P. work in such films as Cast Away, Die Another Day, Riding Giants, Blue Crush and Charlie's Angels II. Don is currently shooting (on land & sea) for the Emmy award winning TV series LOST.

And while the subject matter is at times hard to watch as it mirrors so many of our own arduous personal journeys with our children, it is absolutely beautiful, both from a cinematography standpoint, and also from the perspective of admiring Don & Julianne as parents. I am especially grateful that this couple shows the journey to recovery, warts and all. They have included some of the tension between themselves as a couple and even the struggles that siblings face.
PBS will be showing this film in April, but here's the catch: it will be up to each local station as to whether to air it or not. I'm sure Don & Julianne will let us know when to flood our stations with phone calls, and believe me, you should do it. This is a film you do not want to miss!

Jenny, Jenny, Jenny

Wow, this woman is a firecracker. She grabs your attention and won't let go. Despite a liberal sprinkling of potty words, her mischevious nature makes you want to join in on her fun. She gave an interview to a local station, and here is the link to the unedited version:
http://www.11alive.com/video/player.aspx?aid=83449&bw
There was already a good report about her appearance at the conference written on Age of Autism. It is a fabulous site edited by Dan Olmsted with ongoing commentary by a very talented group of writers. Check it regularly. The address is www.ageofautism.com
This particular piece links you to the phone call Ms. McCarthy placed to the CDC during her speech to us:
http://www.ageofautism.com/2007/11/jenny-mccarthy.html
I spoke with her about creating a very general short (5 min. or less) DVD in which she would give an endorsement of a group getting information about autism recovery to parents. This video could be used by biomedically-based organizations such as NAA chapters to assist in fundraising efforts. We are all aware that Ms. McCarthy certainly can not make appearances around the country for any organization that asks, as much as she would like to help. We also know that it would be too difficult to film a separate DVD for everyone who asks…therefore creating a general DVD that could be used by a large number of organizations trying to meet the needs in their region for children & families would be a God-send, and hopefully this would also alleviate the volume of requests that TACA receives for personal appearances and endorsements.
I really hope that there will be follow-through on this. She seemed very genuine in agreeing to do it, but I can only imagine the million directions she is being pulled in.
She is the spokeswoman for the wonderful organization TACA Now, which is a CA-based biomedical support group. Their website is : www.tacanow.com It offers some wonderful resources. Check it out.
Also, you should read her book, Louder than Words (also quite littered with the f-word, but still worth your time). In addition, she is working on a documentary. If it reaches general audiences, it will rock the boat even more than she already has. And louder than any words could say, thank you from the bottom of my heart. You have made me hold out hope of a safer vaccine program in my lifetime. Hope where there was none. Thank you, fellow warrior mom.

The Kings of Gastro- Wakefield & Krigsman

Drs. Wakefield & Krigsman shared 90 minutes and primarily discussed the gastrointestinal findings they are having in children with autism. They showed numerous photographs of both the external manifestations as well as internal findings photographed by a "pill-cam". External symptoms might include severely bloated bellies, posturing the body to place lots of pressure on the abdominal area, and unusual bowel movements. The photos taken internally with a pill-cam show lesions and inflammation which cause some of these children so much pain.

From the Thoughtful House website:

Many children with CDDs have GI symptoms that precede, coincide with, or appear after the onset of neurological symptoms or regression. A child should produce one formed stool per day--anything else merits attention. GI symptoms common in autistic children include constipation, diarrhea (often described as mushy or grainy, not watery), abdominal pain, abnormal posturing, malodorous stool, undigested food in stool, abdominal distention, and failure of the child to grow. Many children don't present obvious symptoms until they're older, and because of communication and pain-response issues, the GI symptoms of many autistic children are completely overlooked. , There is also a subgroup of autistic children that appear to lack GI symptoms, but without endoscopy evaluation, the question of an occult (hidden) GI inflammation remains unanswered.

The basic take-home message that I got from the presentation is that if you have a child who shows any possible symptoms, check it further. The doctors at Thoughtful House have helped numerous children to feel better. Once you have better information on what you are dealing with, effective treatment is available.

The Thoughtful House website to check further into supporting research. The web address is www.thoughtfulhouse.org

Here is a link to one of Dr. Wakefield's presentations:
http://www.thoughtfulhouse.org/0405-conf-awakefield.htm
and Dr. Krigsman:
http://www.thoughtfulhouse.org/0405-conf-akrigsman.htm
Both of these links show photos of both internal and external manifestations as well as lots more detail about the findings and research.
If your child has gastro issues, Thoughtful House is THE place to go.

SKILLS Program -Dr. Granpeesheh

Before I begin, I want to remind you that if you look to the right of the blogs, there is a link which will take you to the PowerPoint presentations for all speakers who used them, including Dr. Granpeesheh.
Doreen Granpeesheh was a new name for me, because I am almost completely unfamiliar with ABA and its cousins, floortime, Son Rise, etc.
She was discussing her new program SKILLS (Shaping Knowledge through Individualized Life Learning Systems). She gave a brief overview of ABA and that it is meant to improve deficits(such as social skills & communication) and diminish excesses(such as stims & tantrums).
Her new SKILLS model will hopefully be available in the spring at an extremely low, reasonable price (she is hoping around $50 and has applied for lors of grants to make this possible). She wants parents to be able to do this at home, because most of us cannot afford traditional ABA.
It is comprised of a HUGE online questionnaire which will highlight your child's specific deficits & excesses, and then you will work with your child step-by-step to acheive each goal that he or she needs using lessons you will download.
One thing the CARD curriculum attempts to shape is "Theory of Mind". Many of these kids do not understand that the thoughts of others are separate and different than theirs. In other words, "Because I know it, he knows it." The basic sections of the curriculum include: language, play, adaptive, motor skills, executive functions, cognition, social skills, and school skills (non-academic).
A study monitoring children who were taught using the CARD curriculum showed the following gains after 3 years:
*53.8% no longer had an ASD diagnosis
*46.2% went from Autism to PDD or Aspergers
* Average IQ score gain of 20 points


I encourage you to download the presentation to look over more details if you are interested.
The CARD website is http://www.centerforautism.com/
You can also hear her speak about ABA in videos from Autism Media at http://www.autismmedia.org/media17.html

In addition, I will update this blog and let you know if and when I have more information about the SKILLS assessment if it becomes available to parents.

Katie Wright Speaks

The organization Autism Speaks is run by Katie's parents, Suzanne & Bob Wright. Bob is the former CEO of NBC & currently heads up GE. Katie's son has been helped by DAN! and biomedical, and she has been very vocal about her belief that vaccines triggered her son Christian's autism. Katie showed a wonderful video at the NAA conference in which she shows & describes her son's decline. I believe that the video will be made available, and I'd love for you all to see it.
After Katie showed her video and said a few words, we were given the opportunity to ask questions. A bold audience member asked when Autism Speaks would clean up its act and put the ample funds and the mouthpiece they have created in the right direction. Katie's parents were seated in the audience, and she replied, "Now don't get me in trouble...", but then proceeded to explain that AS is going to make positive changes. This was later confirmed by an NAA officer who sat down with the Wrights. We were not given details, but hopefully there is going to be a sea change at the organization which has in the past solely funded useless research and has allowed anti-treatment gurus asuch as "Autism Diva" to take over their message boards. I find it telling that Katie serves on the board of the NAA rather than Autism Speaks.
Katie appeared on Oprah some months ago and begged for the opportunity to mention the vaccine connection -reportedly she was told she'd be "off the show" by the producers if she did so. Oprah granted her permission over a commercial break, and she was allowed to say a bit (some of which was edited).
To see David Kirby's interview with Katie, go to:
http://www.youtube.com/watch?v=IUNO25l1zFs
You will see the rest of the interview to the right of this one-it is in 4 parts.
After this interview was distributed, Katie's parents wrote a letter distancing themselves from Katie because they were worried about offending their big contributors. It seems that there has been reconcilliation and the Autism Speaks ship may be slowly turning due to Katie's refusal to back down.
A common refrain in the biomedical community is "Autism Speaks doesn't speak for me."
But YOU do, Katie. And I thank you for being such a powerful voice.