"Secrecy is the freedom tyrants dream of"

Unless we, as caregivers of a person with FASD, as those who live with FASD, as those who work with clients who are affected, speak out loud and often on the topic, unless we share the diagnosis, the trauma, the crises, no-one will hear, no-one will understand, no-one will help. I believe honesty and openness are vital to improving the lives of those we love and are committed to serving.

The view is worth the effort!

Friday, April 9, 2010

Drug addicts offered cash to stop reproducing

From Britain's Daily Telegraph:

Addicts are being offered up to £200 cash to be sterilised so they do not give birth to drug dependent children.

A controversial American charity is now offering the service to addicts in the UK and has set up a helpline for those interested.

Pro-life campaigners said the offer was "inhuman".

Project Prevention claims to have stopped 3,500 drink and drugs addicts from having more children by paying them to be sterilised.

It has now received £13,000 from an anonymous British donor to help launch a similar service in the UK.

But the campaigner behind the scheme, Barbara Harris, from North Carolina, shrugged off concerns that the money will just be spent on buying more drugs.

And anyone in Britain taking up the offer will still be expected to have the treatment done on the NHS at the taxpayer's expense.

Barbara Harris said she has visited drugs agencies in London to discuss the scheme and added: “I’ve got hundreds of emails from people in the UK saying: 'You need to come here, please come over here, we need your help.

"We’re going to make this offer to drug addicts, social workers, law enforcement. Anyone who comes in contact with these women can refer addicts to us now we have an 0800 number here in the UK."

She said drug users would have to go to their own GP or hospital to arrange the sterilisation and produce a certificate to prove it had been carried out.

She came up with the idea after seeing her own adopted children having to withdraw off crack cocaine after their birth.

Anthony Ozimic, of the Society for the Protection of Unborn Children (SPUC), said: "It is inhuman to seek to eliminate human problems by eliminating humans themselves. Such campaigns should have no place in Britain."

Select Committee on Mental Health and Addictions (Ontario)

I reported to the Select Committee on mental Health and Addictions vis-a-vis FASD, along with a colleague back in September and the Committee has now completed its Interim Report. This report is available on the Legislative Assembly web site at: http://www.ontla.on.ca/committee-proceedings/committee-reports/files_pdf/SCMHA-InterimReport-March2010.pdf

Pages of particular interest are 10 (First Nations, Inuit and Metis Peoples), and 31 (specific illnesses). Some snippets:

"Witnesses noted that early diagnosis is key, as is the case with most conditions. However, FASD diagnoses are complex and typically require a multi-disciplinary team. Thus, FASD is frequently misdiagnosed as attention deficit hyperactivity disorder (ADHD) or autism, and treated incorrectly, if at all, or simply dismissed as bad behaviour.

"Witnesses advocated for proper diagnostic services, case management, special education and developmental programs, addictions counselling, assisted living options, skills training, the provision of structured environments, and respite care for families.

"It was also recommended that a single ministry take the lead for this condition and provide a targeted pool of resources. At present, FASD has "orphan" status, as no ministry assumes responsibility for it, and it lacks as OHIP billing code. Finally, care for individuals with FASD should be incorporated into a strategy for those with concurrent disorders, and a prevention campaign sensitive to the needs of particular communities should be developed."

High prevalence of epilepsy associated with fetal alcohol spectrum disorder

http://news.oneindia.in/2010/04/06/highprevalence-of-epilepsy-associated-with-fetal-alcoholsp.html

Fetal alcohol spectrum disorder (FASD) refers to a range of negative developmental outcomes that result from maternal drinking during pregnancy. Children with FASD can suffer from many problems, including epilepsy, a disorder characterized by spontaneous recurrence of unprovoked seizures.


The study will be published in the June 2010 issue of Alcoholism: Clinical and Experimental Research and are currently available at Early View.

"There are very few studies that have examined the relationship between seizures and epilepsy among individuals with FASD," noted James Reynolds, a senior scientist with the department of pharmacology and toxicology and the Centre for Neuroscience Studies, at Queens University. Reynolds is one of the study's authors.

"Many patients with epilepsy have a history of exposure to a prenatal insult, so we reasoned that prenatal exposure to alcohol could be such an epileptogenic insult," added Peter Carlen, a neurologist and senior scientist for the division of fundamental neurobiology at the Toronto Western Hospital, another of the study's authors.

"Secondly, there is a significant overlap in brain structures that suffer from deficits as a result of chronic prenatal alcohol exposure and those that are associated with seizures, specifically in the brain's hippocampus. Thirdly, previous studies had failed to examine other complications that occur in mothers who drink alcohol during pregnancy, such as the effects of drinking on seizure activity. Finally, previous studies used small sample sizes and failed to clearly define seizures and FASD."

"Recently, scientists have begun investigating whether fetal alcohol exposure increases the risk for developing other behavioral health and neurological problems," added Dan Savage, Regents' Professor and chair of neurosciences at the University of New Mexico. "Indeed, evidence has begun to suggest that children with FASD are at greater risk for alcoholism, substance abuse or depression later in life.

While it is too soon in the relatively young history of this research field to assess whether maternal drinking during pregnancy increases the risk of aging-related neurologic disorders, such as stroke or Parkinson's disease, several recent large-scale retrospective studies have examined whether fetal alcohol exposure increases the risk of developing epilepsy."

For the study, researchers examined the histories of 425 individuals (254 males, 171 females), between the ages of two and 49 years, from two FASD clinics. Relationships between a confirmed FASD diagnosis and other risk factors - such as exposure to alcohol or other drugs, type of birth, and trauma - were examined for the co-occurrence of epilepsy or a history of seizures.

"This study revealed a much higher prevalence of epilepsy and seizure history in individuals with a diagnosis of FASD," said Stephanie H. Bell, a researcher with the Centre for Neuroscience Studies at Queens University and corresponding author for the study. "In the general population, less than one percent are expected to develop epilepsy; of those with FASD, six percent had epilepsy and 12 percent had one or more seizures in their life. Subjects were more likely to have epilepsy, or a history of seizures, if exposure to alcohol had occurred in the first trimester or throughout the entire pregnancy."

"While this report supports a growing impression that fetal alcohol exposure may predispose the immature brain to the development of epilepsy, the results do not establish a direct cause-effect relationship between FASD and epilepsy," cautioned Savage. "Establishing a direct link between these clinical conditions will be a difficult challenge given our incomplete understanding of how ethanol damages the developing brain and what neuropathological changes in brain tissue lead to the development of different types of epilepsy." (ANI)

Sunday, March 28, 2010

'Unfit' mother of 10 costs council £2.5m

A council faces a £2.5m bill because social workers have taken 10 children away from a mother judged unfit to have them.

The woman, named only as Rachael, wants custody of her children and has said she will “keep going” until authorities let her keep one.

The 33-year-old, who lives in Birmingham, had the 10 children by six different fathers but social workers deemed them at risk of neglect; five were adopted, four are in long-term foster care and one is awaiting adoption.

The total projected cost to the taxpayer of looking after her children – aged between 17 months and 15 years – is estimated at £1.5m, while legal fees, adoption costs and social workers’ time, bring the total to £2.5m.

John Hemming, woman’s MP in Birmingham Yardley and a campaigner for reform of the family courts, said the case illustrated the potential cost of removing children because parents often go on to have more offspring.

He said at least 500 of the 6,000-plus annual care applications involved mothers having more than one child taken away.

“You could not sit down and devise a more expensive and wasteful way of dealing with a family problem,” he said. “The legal costs involved can be almost as much as the care itself.

“In practice, if Rachael had been allowed to keep her children in a place where she was away from abusive men and where she could be supervised, it would have been much more beneficial in the long term.

“She is trying to cope and all the state is doing is hitting her over the head every time. This is a problem not just in Birmingham but throughout England.”

Rachael, who has never married, told a newspaper she intended to have her next child in Spain or Ireland to try to prevent the authorities from taking it.

“I want my kids back but I know it isn’t going to happen,” she said. “I will keep going until they let me keep one.”

Social services first placed her children on the protection register because her first partner was abusive while her second was revealed to be a sex offender.

She had further children with another partner but he left her and she was deemed unable to cope.

Birmingham City Council, which has about 2,000 children in its care, said it could not comment on individual cases or their costs but that it was spending £41m over five years on pilot programmes to offer early support to parents who are struggling to cope.

It hopes to reduce the number of children it takes into care by five per cent per year, saving the agencies involved £400m.

Cheryl Hopkins, Birmingham’s director of strategy and commissioning in children’s services, said: “Obviously we have to keep children safe, but what we know is that the outcomes for children who are in care are not good in terms of their life chances, and it costs us a fortune.”

Monday, March 1, 2010

FASD is a cause of Autism?

What Is Real Autism?
By Lisa Jo Rudy, About.com Guide
Updated January 08, 2010

About.com Health's Disease and Condition content is reviewed by the Medical Review Board

Question: What Is Real Autism?
There's plenty of controversy over the question, "What is real autism?" If a child once had symptoms, but now no longer has symptoms, was it "real" autism to begin with? What if the symptoms were caused by a known issue, or started after a child turned three? Here are answers from a top expert, Dr. Susan Levy of the Children's Hospital of Philadelphia.
Answer: While the definition of "real" autism may seem elusive, in fact it's much simpler than you might imagine. If a child under the age of three develops symptoms which meet the criteria for an autism spectrum disorder, then that child is appropriately diagnosable on the autism spectrum. Period.

To clarify this point, I asked Dr. Susan Levy, a top autism expert at Children's Hospital of Philadelphia:

If a person has "autism-like" symptoms, does he or she have an autism spectrum disorder? That is, if a person has, for example, fetal alcohol syndrome with "autism-like" symptoms, does that person have autism caused by FAS, or FAS with autism-like symptoms, or a dual diagnosis?

Here is how Dr. Levy answered the question:
If they meet the criteria, they have autism. Those medical issues are the underlying cause. Autism is the end-product of different biological entities. FAS [fetal alcohol syndrome] may be a cause of autism. The medical issue may cause the problem. There could also be confounding issues that make diagnosis difficult. [It's also critical that] onset must be before age 3. if there are cognitive impairments after age 3, it's not autism - it's brain injury with autism-like symptoms.
Dr. Levy says, while about 80% of autism is idiopathic (of unknown cause), there are at present many known causes of autism including FAS, rubella, Fragile X Syndrome, and more. In addition, according to a a report published in Pediatrics in 2009 entitled "Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007," as many as 40% of children who received an autism spectrum disorder at some point in their lives are no longer diagnosable on the autism spectrum.


Sources:

Interview with Dr. Susan E. Levy, MD, Director, Regional Autism Center, Childrens Hospital of Philadelphia, December 2009.

Rice, Catherine. "Prevalence of Autism Spectrum Disorders." Autism and Developmental Disabilities Monitoring Network, United States, 2006.

__._,_.___
New Normative Data Will Improve Diagnosis of Fetal Alcohol Syndrome

TORONTO, Feb. 17 /CNW/
- Fetal Alcohol Research, the official journal of FACE (Fetal Alcohol Canadian Expertise), has published breakthrough research by Dr. Sterling Clarren, CEO and Chief Scientific Officer of Canada Northwest FASD Research Network and colleagues, establishing Canadian norms which will allow more accurate diagnosis of Fetal Alcohol Spectrum Disorder (FASD). Normal Distribution of Palpebral Fissure Lengths in Canadian School Age Children, by S. Clarren, A.E. Chudley, L. Wong, J.Friesen, R. Brant @ http://www.cjcp.ca/pubmed.php?articleId=253

FASD is the most prevalent cause of mental handicap among Canadian children. Caused by maternal drinking during pregnancy, FASD poses difficult diagnostic challenges. One of the hallmark physical features of FASD is the horizontal length of the eye slit opening (palpebral fissure). Affected children often have smaller eye slits for their age. To be able to define the relative size of the eye, it is crucial to have normative values from the population of healthy children. Till now these definitions were based on old data that did not include all racial and ethnic groups as represented in Canada. There was concern that some populations might have smaller eye size genetically.

Dr. Clarren said, "We found that eye size is similar enough in all racial groups that they can be evaluated through the same normal sample. We also found that the normal values are much smaller than in those presented in the literature. This finding is important because as many as 40% of children with normal eye size would have been diagnosed with have small eyes slits on the older charts regardless of their genetic background. These new data are critical if FAS prevalence is to be accurately measured in our country or anywhere else."

To interview Dr. Clarren, e-mail sclarren@cw.

bc.ca or call (604) 875-2996

For further information: Contact S. Santiago, FACE Research Network Coordinator, Tel: (416) 813-8084, journal.fas@sickkids.ca, www.motherisk.org/FAR