"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!
Showing posts with label FASD. Show all posts
Showing posts with label FASD. Show all posts

Friday, April 9, 2010

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)

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

Sunday, February 28, 2010

Map of 40 Margaret Street Guelph, Ontario by MapQuest

Map of 40 Margaret Street Guelph, Ontario by MapQuest

I'm new to this whole Blogging thing!

I am hoping that this Blog will ultimately offer information on items in the news on FASD, notice of upcoming conferences, workshops of relevance, links to other sites on the web and occasionally the ravings of a tired mother! Of course, all this presupposes I will have enough spare time and energy. Hopefully, there will be some humour along the way. Laughter is the key to renewing the vital spark, and it's what keeps us all sane.