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Thank You from SafeMinds to IACC Public Commenters

Thank you typeBy Lyn Redwood

I want to personally thank everyone who responded to the SafeMinds action alert to submit written public comments to the IACC regarding their child’s medical conditions this past month. And a huge thanks to Eileen Nicole Simon, Jill Rubio, Albert Enayati, Jeanna Reed, Nicholas, Carolyn, and Andrew Gammicchia, Brooke Potthast, Clinton Potocki on behalf of Dawn Loughborough, and Wendy Fournier who came in person to share directly with the committee their struggles to get appropriate medical care for their children and recommendations for what can be done to make things better. 

Historically, medical problems in children with autism have been completely denied by the medical establishment and the IACC committee. And, although the response from the committee after the panel discussion regarding co-morbidities was lackluster, the outcome at the very end of the day when discussion finally took place resulted in a unanimous vote by the committee to create a working group to focus on these conditions.

This was not the first time that the IACC has heard of co-morbidities. Parents have been meeting with Tom Insel and his staff as far back as 2002 telling him our stories of sick children and recovery with appropriate medical treatments. But just because we said autistic children had multiple underlying debilitating medical conditions didn’t make it so. Many impassioned discussions (like the one below pulled from IACC transcripts in 2009) couldn’t bring the committee around. The sad fact is that government moves at a snail’s pace, but passionate participants can speed up progress and make a positive difference for all those who can’t be there to speak for themselves.

Ms. Redwood: “For those of you who don't know me, I am one of the public members of IACC. And I just wanted to share with you a story about a little girl in Georgia who was 12 years old. She was being taken care of by her grandparents and they could no longer control her behaviors and she was admitted to a state psychiatric institute. And within a matter of months, she deteriorated. She became very ill. She writhed in her bed all night long. She vomited and by the morning she was dead. When an autopsy was done, this little girl was obstructed and she had infarcted her bowel. And that was never treated and never acknowledged. And I am sharing this story with you because I feel so strongly that these children have many, many underlying medical problems that are being completely overlooked because the focus has been on the brain and not the body. And I think it is an area where we can make so much difference. There is not any amount of behavioral therapy, or speech therapy, or assisted communication devices that is going to help with a child who is impacted and has infarcted their bowel. And we are missing so many opportunities to improve the health of these children. Oftentimes when we these underlying medical conditions are addressed and treated, their behaviors get better. Some kids have even lost their diagnosis. So we know they have immune system abnormalities. We know they have ulcerative colitis. They have metabolic stress. They have low levels of glutathione. They are under methylated. And there is so little focus on addressing those medical issues. We have protocols in place now for treating inflammatory bowel disease. But it is not anything that is even considered. And I know {another IACC member] mentioned yesterday that the pediatricians are so stressed, they don't have time to really look at these children medically and it is an area where we could make a tremendous amount of improvement and it is not anything that requires a genetic test or an MRI or anything except a good physical exam and some laboratory work. So I just want to put in a plug to please look at the children's bodies as well as their brains.”

After the comment above a developmental pediatrician on the IACC took “offense to this description of children with autism as being ill and sick” and I was actually accused by a Federal member of the IACC in a handwritten note passed to another committee member of “pushing autism as a multi-system disorder in order to feed into the vaccine injury awards”
See Dr. Story Landis Resigns from IACC.



In 2011, with increased awareness of these underlying medical conditions from parents along with research published by the Autism Treatment Network that documented that a high percentage of children with ASD had underlying medical conditions, the committee finally acknowledged the existence of co-occurring conditions in the strategic plan as a cross-cutting theme. The plan also calls for “research to understand the scope and cause of health conditions for those with ASD, along with the development of multidisciplinary health assessments and effective treatment guidelines (that) can immediately improve the quality of life for individuals with ASD and their families.”

I sincerely hope that the work group established this past Tuesday will focus on the development of these multidisciplinary health assessments and effective treatment guidelines that can be placed in the hands of every health care professional that treats someone with autism. Our children and adults with autism should not have to suffer one more day in pain and silence because their health care providers lack the knowledge and expertise to appropriately manage their care. 

So yes, we did make another step forward last week and the voice of those advocates involved along with the thoughtful presentations of Drs Tim Buie and Richard Frye, was key to this success.  But there is still so much more that needs to be done. We will never give up our efforts to restore health to all individuals with autism and to prevent what happened to our children from ever happening to another child.   So for those of you with an appetite for change who want to contribute to these efforts the next full committee meeting of the IACC is scheduled for October 29, 2013 – NIH Neuroscience Center, 6001 Executive Boulevard, Rockville, MD.   If you have not already submitted public comment, or even if you have, do so again. You can send any inquiries and your public comment to iaccpublicinquiries@mail.nih.gov.

Lyn Redwood RN, MSN - IACC Member – SafeMinds

Comments

Laura Hayes

Lyn,

Would you be willing to post the names of the pediatrician who took offense and the Federal member who passed the note after your comments about children with autism having underlying medical problems? Also, how about posting their contact info? I'm sure that many of us might like to send them an email, fax, or letter.

Thank you so much for your years of service on behalf of ALL our children!

Twyla

Thank you so much, Lyn, for your continuing advocacy. I have not seen all of the video of the recent IACC meeting yet, but what I have seen is very moving and informative. It's great that all this was put before the committee, even if they are seemingly made of stone. Thank you for reporting back to us too!

Eileen Nicole Simon

Lyn, thank you for this report, and for asking people to send their comments. I don’t think most of the federal members of the IACC understand the seriousness of severe autism. Otherwise they would not appoint so many “self advocates” as public members. Also, as long as they believe the cause is genetic, they feel no great urgency to look for environmental causes.

One example of a co-morbid condition (that is also genetic) is PKU. Every newborn baby is now tested for PKU, and if discovered, a diet low in phenylalanine is started. PKU is caused by a defective enzyme that converts phenylalanine to toxic metabolic substances. These toxic metabolites affect the brain the same way that substances like alcohol, mercury, lead, and quite a few pharmaceutical substances (like valproic acid and some anti-cancer drugs) do.

Note, the cause and treatment for PKU were discovered in 1934, long before the structure of DNA was discovered. The news today that the effects of the aberrant chromosome in Downs syndrome points to hope for prevention of mental decline in these children too. Downs syndrome is another co-morbid condition associated with autism in some cases.

I look forward to reading the discussions about public comments submitted to the IACC. No one’s ideas should be dismissed unless scientific evidence can be cited as proof. Results of toxicology research (not epidemiology) should be looked up for many of the proposed causes of autism submitted as public comments.

maurine meleck

Thank you Lyn for all your hard work. I recently saw some old footage of you on video from years ago--crying in the audience when someone was speaking about our sick children. It brought back memories of just how long we have been in this fight. I didn't send public comment to Safe Minds because at the time I was concerned about some upcoming legal issues here, but the next time the opportunity arises I will do so. Thanks again. And how come you never age(LOL)?
Maurine

Benedetta

"A developmental pediatrician on the IACC took “offense to this description of children with autism as being ill and sick"

I take offense of his offense -- he is one sick puppy - to hear a child died of a blocked bowel and not one in his profession helped.

I dare say his attitude is sicker than that child was.

Vicki Hill

Thank you, Lyn, for your attention and service to our children.

My son with ASD is relatively high-functioning, but with plenty of co-morbid disorders. His seizures started at age 9 but were not finally verified to the satisfaction of the doctors until age 12. By that time, part of his "official diagnosis" included permanent brain changes due to the ongoing seizures!

When the seizures were finally confirmed, my son's reaction surprised me. "Yes!" he exclaimed. "I've been telling these doctors for 3 years that there was something wrong in my brain and they wouldn't believe me."

If they wouldn't listen to a child who could express the issue this eloquently, how much worse must it be for a child who is nonverbal? Having a diagnosis of autism does make one immune to all other illnesses. I would hope that the IACC could deliver that message to medical professionals across the country.

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