[FEAT BC Admin]

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[David and Barbara McLeod]

Holiday Wishes to all of our FEAT friends.
Here's to a momentous 2005!

David and I have included an introductory letter and copy of the petition in all 100+ Christmas cards we sent to family, friends and work colleagues.

I am including a copy here in case it is of use to any of you. I have freely "borrowed" from posts to date.

¡§Holy Cow! They ruled against our kids!¡¨

Dear Family and Friends,

Our family, along with many others, suffered a devastating loss in the Supreme Court of Canada last month. After almost seven years of legal action and two overwhelming wins in the BC Supreme Court and the BC Court of Appeals, the Supreme Court, incomprehensibly decided against our request for equal treatment under Medicare. What a cruel irony that Tommy Douglas, the father of Medicare, should have been voted the Greatest Canadian that same month!
Our contention was that our kids (children with autism) were being discriminated against under Section 15(1) of the Charter of Rights and Freedoms. If our children had physical disabilities, their treatment would be covered under Health Services. Because they have a mental disability, they have been relegated to Social Services. Our kids are diagnosed by health professionals; there is an effective treatment with more than 30 years of scientific research behind it that exists and is making an enormous difference in the lives of autistic children. Currently only those families with the ability to pay have access to this treatment.
There are so many more details that I would like to share with you to counter the simplistic, short-sighted, half-truths espoused by government officials. If you are interested or would like more details, please visit http://www.canadaautism.com or https://www.featbc.org. I have pasted a couple of articles to the back of this note as examples.
We need your help! The Supreme Court has given the decision back to the provincial government to decide whether and how worthy our children are of treatment dollars. As that is where we started in 1997, we are not optimistic. Our only chance now is to garner public support for our cause. Tell your provincial and federal politicians that autistic children need and deserve treatment dollars. Treatment now will allow many to live a normal life, many others to work and contribute to society and save significant money that will, otherwise, go to paying for custodial care for a lifetime.
What can you do?
„« Have your neighbours, friends, family, co-workers sign the attached petition. Mail it to your MP. (address at the bottom of the petition)
„« Tell your MLA and the Premier that you support treatment for children with autism. (See sample letters at http://www.canadautism.com )
„« Find out more about autism treatment at https://www.featbc.org.
„« Keep the issue alive as we head into the next provincial election.

¡§One hundred years from now, it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove…but the world may be different because I was important in the life of a child.¡¨

The back page included the following (Thanks Jenn Ralph and Jean Lewis.

FEAT of BC Mission Statement

Families for Early Autism Treatment of B.C. is dedicated to bringing the most effective type of autism treatment available to the children of British Columbia (Lovaas-type Applied Behaviour Analysis ¡V A.B.A.). A central part of our mission is to make Lovaas-type A.B.A. autism treatment universally accessible to all B.C. children aflicted with autism spectrum disorders.

¡§Once it seemed like a life sentence. Now we know that that sentence can often be commuted, even lifted. Now we know there is hope. As long as we intervene early enought, intensively enough, we can rescue many children from the solitary confinement of autism…Where are other parents to turn ¡V parents without the resources to hire trained therapists. Somehow, we have to find the money to help children with autism in those crucial preschool years. If we don¡¦t, the cost to all of us of caring for an untreated adult will be far greater, reaching into the millions. The cost in terms of human suffering is not to be measured.¡¨
David Suzuki

B.C. parents lose autism lawsuit

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality ¡V that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about
fiscal doom-and-gloom of the AG¡¦s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings,
which it appears they did not with all of the inaccuracies in their 22 page judgment, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like ¡§groundhog day¡¨, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.
Jennifer Ralph, Richmond, BC

*****************************
What a disappointing decision, and one which undoubtedly will have very serious social and economic impact in Canada if legislators there do not wake up. Couple the epidemic like increase in the incidence of autism with ineffective treatment, and essentially you have created the "perfect storm" for lifelong dependency and care, certainly for a significant percentage of these children. Hopefully, Canadian legislators will see this looming threat…..it's either pay now or cry greater fiscal tears later…..Jim Mulick's "cost benefit analysis" should be brought to the attention of every single legislator in Canada to show that even on a purely economic "bean counting" analysis, and wholly apart from the human wreckage, it is fiscal suicide for Canada to proceed this way.
Gary Mayerson

"The only thing necessary for the triumph of evil is for good men to do nothing."
– Edmund Burke

Barbara

[Mike & Jean]

ATTENTION ALL PARENTS!!!

Those of us involved in the struggle to secure publically funded treatment for children and those of us whose children are benefitting from that funding need to now acknowledge the two lawyers who committed the last seven years to this enormous task. It is important for all parents, especially those new to this struggle, to know that prior to the Auton decision there was NO treatment funding for science based treatment available in B.C. Today, because of Auton, every child under the age of six receives $20,000 per year for treatment and every child over six receives $6000.00 per year. That funding has given children, particularly the under 6 group a chance they never had before.

As a member of the Auton/Anderson legal steering committee as well as a petitioner in the Anderson case, I cannot adequately express my gratitude to Chris Hinkson and Birgitta vonKrosigk for their tireless work in advocating for all our children. Thankyou both for believing our children are worthy of justice.

I would encourage parents and others involved in this struggle to show their appreciation by sending a message of thanks to Chris and Birgitta at the following email addresses:

Chris Hinkson: ceh@hgelaw.com
Birgitta vonKrosigk: Bvonkrosigk@northshorelaw.com

We need to take time to thank those who help our children.

Jean

[Deleted User]

I have been speaking to the HR dept at work, and here is what I turned up. I have copied and pasted an email from the site admin assistant at work. There are 1500 people that work in my building, I have collected 75 signatures for the petition, so far… more to come. Everybody I have spoken to has signed my petition, thus far.
I have been rather sick, and fairly busy with 2 autistic children, plus my NT child, so I figured the best way communicate my work's response was to give FEAT the info. If further info is required by me,
email: atlas_shrugging_now@yahoo.ca
work: (604) 702-5100/4977
home: (604) 703-0271
please contact me if I can help
Amie

__________________________________________________

Hi Amie,

I have been filled in on your situation and have been informed that you were given the ok to set up in the cafeteria to collect signatures for your petition during your days off. I thought it might be a better idea to have the petition set up at security since it can be there 24/7 and if you send me the information about the petition I can send an email to the site letting them know that it is there to sign.

Regarding having the organization to come in and collect donations…just get them to contact me and I can arrange a time for them to come in to the cafeteria.

Let me know your thoughts about the petition…its up to you…just thought you might get more signatures if its available to sign 24/7.

Regards,

Ann-Marie Blessin
Site Administrative Assistant
Chilliwack – Stream
(604) 702-5100 x2106

[Monika Lange]

Hi Barbara,
As far as I know the only place to test for Malignant Hyperthermia is through a muscle biopsy in Ontario. I would just make sure the anaesthetist is on the lookout. Should be safe at Children's.

[Barbara Rodrigues]

re: sedation

The drug they give them to settle them before surgery also makes my guy hyper and hard to control.

Now he had the gas a year ago with no effects – in fact – it was the best I had seen him come out of something – usual with the IV only he's drugged for days after. But does this mean the first time he could handle it and then maybe if it were to be adminstered again – then he could have a reaction?

How does one test for this?

Barbara

[J.Graham]

In regards to Monikas last post BE VERY CAREFUL.

My son has Malignant Hyperthermia too. He also has a genetic condition where he CANNOT have Nitrous Oxide. This condition is caused by a genetic mutation on the MTHFR gene. I have attached some info on it at the end of this post.
This genetic mutation is quite common among autistic children.

Also, FWIW I would skip any post narcotics after the surgery. I opted for none when my son had surgery and they got the charts mixed up and gave him 2 different narcotics (post) and it took him 6 weeks to recover from the regression they caused.

Jen

Anesthesia May Be Fatal In Those With Rare Disorder

By Linda Carroll
NEW YORK (Reuters Health) -July 2, 2003– A common form of anesthesia,
nitrous oxide, may cause serious harm to patients with a rare metabolic
disorder, researchers say.
People who are born with certain mutations in the gene responsible for
the breakdown of folate may be at risk for neurologic damage, and even
death, if they are given nitrous oxide, according to a report published
in The New England Journal of Medicine.
The disorder, known as 5,10-methylenetetrahydrofolate reductase
deficiency (MTHFR), is quite rare, according to report co-author, Dr.
Kirk Hogan, an associate professor of anesthesiology at the University
of Wisconsin in Madison.
"I think there have been fewer than 50 children reported to have it,"
Hogan said in an interview with Reuters Health. "But there is a concern
about children with the more common mutations of this gene that are
associated with depressed enzyme activity. Those mutations occur in up
to 10 percent of us. The unanswered question is whether people with
those mutations, when given nitrous oxide might experience more subtle
injury."
Hogan hastened to add that people who were going to have surgery — and
who don't have MTHFR — shouldn't be overly worried if they are to
receive nitrous oxide.
"It's really important that kids with this disorder don't get nitrous
oxide," he added. "For others, who have the more common mutations, I
don't see any cause for panic. Nitrous oxide has been in use for over
100 years. If there was a serious problem with it, I expect we would
have seen it by now."
Still, Hogan said, further research on the effects of nitrous oxide on
people with the more common mutations, might explain why some people
have delayed recovery from surgery.
For the new study, Hogan and his colleagues re-examined data on the 1983
death of an infant. When the baby was three months old, he underwent
anesthesia to have a leg growth biopsied and later was anesthetized
again to have the leg tumor removed.
Though healthy when released from the hospital after surgery, the baby
started having seizures and breathing problems 17 days later. He died 46
days after surgery.
In 1985, when Hogan first looked at the infant's anesthesiology records,
no one knew what caused the child to suffer brain damage, which
eventually killed him.
"This little guy's been on my mind for 15 years," Hogan said. "Then,
several years ago the mutations of the genes that encode for this
disorder were found."
And new research on the disorder pointed to a possible link between the
baby's damaged brain and anesthesia.
Nitrous oxide, when given to people with MTHFR, blocks the production of
methionine. And methionine plays an important role in DNA synthesis of
neurotransmitters and myelin, the insulating material covering nerves.
"Methionine is important for everyone, but especially those with
developing brains," Hogan said. "This little guy was in the first few
weeks of life at a time when his body was busily making brain cells."
SOURCE: The New England Journal of Medicine 2003;349:45-50.

_____

However, in children with developmental delay or altered
homocysteine metabolism, methionine levels should be determined
before using nitrous oxide-containing anesthesia, he noted.

N Engl J Med 2003;349:5-6,45-50

[Monika Lange]

I sent this note to Alison regarding anaestheic experience with my son. Thought it wouldn't hurt to send it to everyone else too:
I thought maybe I should tell you a couple things about my son's experience with anaesthetic/sedation, just in case the experience is common amongst autistic kids. First, usually kids are given a pill to sedate them (valium or equivalent) before they go into the operating room. The sedative had exactly the opposite effect on my son. It made him absolutely buzzed and hyper. The anaesthetist told me it is common for autistic kids to experience an opposite effect than usual. Second, my son could have died last time he was anaesthetized because he has a condition called Malignant Hyperthermia. This is a reaction to gas anaesthesia or sedative pills. It causes the heart rate and blood pressure to dramatically rise and if not detected within the first 15 minutes of onset, can kill. It is not usually detected the first time a child is "under" because it has a cumulative escalating effect with each subsequent anaesthetization. Intravenous is the only anaesthetic my son can have safely. You might want to talk to your child's anaesthetist and tell him you would prefer IV only… or at least caution him to be on the lookout for Malignant Hyperthermia. I have no clue whether these things are common to autistic kids, but other things (eg, Celiacs Disease) seem to be corelated so you never know.

[Mike & Jean]

ATTENTION ALL PARENTS!!!!!!

Attorney General Jeff Plant is on the Bill Good Show this a.m. – Monday, Nov. 29th sometime between 8:30 a.m. – 12:00 p.m. It's CKNW 980 AM.

Call in and speak out for our children.

Jean

[David Chan]

thank you Susan, that's one of the best description of a politican
that I have heard of late

Thanks for the yucks

Dave

[Linda Cucek]

Dear Debra,

Thats a great letter you wrote to Linda Reid, its about our kids getting the Lovaas Treatment and this is quoted from your letter:
"this is all about what is best for the children
not about personality struggles within the different ministries". I also don't believe any of them know the meaning of the "Lovaas" treatment.

James Cucek's mom Linda

[Author]

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