Edmonton and area Fetal Alcohol Network Society

New research suggests the reason fetal exposure to alcohol increases the risk of drug addiction later in life may be related to endocannibinoids, cannabis-like chemicals that the brain itself produces.

“The end result is that the dopamine neurons in the brain become more sensitive…”

“By understanding the role endocannibinoids play in increasing the brain’s susceptibility to addiction, we can start developing drug therapies or other interventions to combat that effect and, perhaps, other negative consequences of prenatal alcohol exposure,” says senior research scientist Roh-Yu Shen of the University at Buffalo.

His work focuses on how prenatal alcohol exposure alters the reward system in the brain and how this change continues through adulthood.

Prenatal alcohol exposure is the leading preventable cause of birth defects and neurodevelopmental abnormalities in the United States.

Fetal Alcohol Spectrum Disorders (FASD) cause cognitive and behavioral problems.

In addition to increased vulnerability of alcohol and other substance use disorders, FASD can lead to other mental health issues including Attention Deficit Hyperactivity Disorder (ADHD), depression, anxiety, and problems with impulse control.

“After the prenatal brain is exposed to alcohol, the endocannibinoids have a different effect on certain dopamine neurons which are involved in addicted behaviors than when brain is not exposed to alcohol,” Shen says.

“The end result is that the dopamine neurons in the brain become more sensitive to a drug of abuse’s effect. So, later in life, a person needs much less drug use to become addicted,” Shen explains.

Specifically, in the ventral tegmental area (VTA) of the brain, endocannibinoids play a significant role in weakening the excitatory synapses onto dopamine neurons. The VTA is the part of the brain implicated in addiction, attention, and reward processes.

In a brain prenatally exposed to alcohol, however, the effect of the endocannabinoids is reduced due to a decreased function of endocannabinoid receptors.

As a result, the excitatory synapses lose the ability to be weakened and continue to strengthen, which Shen believes is a critical brain mechanism for increased addiction risk.

Shen’s research appears in the latest issue of the Journal of Neuroscience.

A research grant from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) of the National Institutes of Health (NIH) supported this research.

Retrieved from:  https://knowridge.com/2017/10/how-alcohol-drinking-in-pregnancy-increase-babys-addiction-risk/

Written by: Martin Butcher adoptee, and adoptive father of a child with FAS

This week is National Adoption Week 2017 with the hashtag #SupportAdoption. It’s one of the biggest adoption awareness raising initiatives in the UK. So yes, the over-riding aim is to find families for some of the most vulnerable children in the UK. But there’s also a hope that those whose lives and hearts have been touched by adoption will share their individual stories to #SupportAdoption.

Maybe you’d like to hear mine.

#SupportAdoption

Sixteen years ago, I received a phone call out of the blue. I was sitting at my kitchen table with a group of friends, chatting and laughing over coffee and cake. The kids were all at school. I’d adopted the little girl I’d been fostering nearly a year before and made it clear to Social Services that that was us done. With three kids, our family was complete. But this was urgent, they said. They wouldn’t be calling if they weren’t desperate, they said. It will only be for six weeks, they said.

I went back to the table and told my friends. They all thought it was so exciting. The idea of a newborn baby coming to us the next day straight from hospital… You can do it, they said. We’ll support you, they said. We’ll be there for you, they said.

Sixteen years on and that tiny baby is our beloved son. He never moved on. He’s our challenging yet wonderful son with FASD and a learning disability who’s never going to live independently. And those friends are still in our world, still supporting the best they can. Not in hugely practical ways, but just by sticking with us. They have my back. They believe in me. They stand by me even when they can’t understand. They’ve never lost faith in me, even when I’ve lost faith in myself. They let me talk when I want to talk and stop asking questions when I don’t. They have supported our adoptions, in ways that most other people we’ve encountered have not.

#SupportAdoption

Most ‘normal’ people with ‘normal’ families don’t understand adoption. They don’t understand how you can love someone else’s child as much as your own birth children. They don’t understand when you say it’s different (because how can it not be different when you grew your birth children inside you for nine months and gave birth to them and breast fed them?) but it’s equal in intensity. They ask how ‘your own children’ are coping with these other children in their world, as if these other children are not your own. They describe your adoptive children’s birth mother as their real mother or natural mother, as if you are in some way fake or unnatural (I choose to go with ‘supernatural mother’!).

The kids hear all this too. They know they are different. They’re treated differently. They’re not invited to the parties. They’re looked at with suspicion. They get asked if their mum dumped them in a dustbin. They’re told they weren’t wanted and that their birth families were ‘skanky’.

As an adoptive parent, you have to be thick-skinned and strong for your kids: a veritable love warrior. You have to fight to keep their self-esteem and sense of identity intact. You have to support adoption, be an advocate for adoption. You have to tell your kids a different story to the story the world is telling them – in a louder, more confident voice that drowns out all the negative voices.

#SupportAdoption

We all go through life believing that the help and support will be there when we really need it. Like the panic button you’re given to hold when you’re in that MRI machine, which you can push if you need help. Which my husband pushed and no one came. He shouted and no one came (he ended up throwing his wedding ring across the room because he was panicked it might interfere with the MRI scan).

One afternoon when my daughter was in Year 10, we got a phone call from school saying that she was telling everyone that she was going to meet her birth family after school. They thought we should know. That’s as far as the support from school went. This revelation rocked our world. We had no idea how to react. We turned to Adoption Services for help. We pushed the panic button. No one helped. They told us to look online for advice, to order a book form Amazon. We shouted louder for help. No one came. No one helped. It appeared this wasn’t a big issue for anyone but ourselves. These services are so stretched that only the emergency cases get a chance of receiving help. We didn’t count as important enough.

We got this from school too – ‘She’s not on our radar.’ And psychological services – ‘She presents as a delightful child’. No one had the resources to help us or the understanding to see what was going on.

And then it was too late.

#SupportAdoption

The support you receive when you adopt may not come from the places you expect. It can be a lonely journey – isolating, terrifying, undermining. You have to create your own support structure – a local support group, a Facebook group, a close friendship with another adopter – places where you can be heard and understood and supported.

Adopters need to know that they are not alone. Adopters need to support each other.

We are the experts on adoption. We’re living it. We are the only ones who can ever really understand. We have been there before.

I choose every single day to #SupportAdoption.

For this is my family. This is my life. This is my reality.

I have the most incredible children in my life.

They’re the most forgiving, resilient, determined, funny, generous kids I know.

And I have the privilege to call them mine.

Retrieved from:  http://www.huffingtonpost.co.uk/helen-redfern1/supportadoption_b_18255524.html?utm_hp_ref=uk

With the recent federal commitment to increase mental health funding across Canada, we need to turn our attention to people with developmental disabilities – individuals who are currently invisible within Canada’s mental health system. This group has some of the greatest needs for mental health services and supports, yet is rarely acknowledged or targeted in mental health efforts.

Those with developmental disabilities, which includes Down syndrome, fetal alcohol syndrome and autism, are rarely recognized in mental health statistics, policy priorities, education and training or even clinical practice.

There was a time when this population was not “seen” within mainstream mental health initiatives, because they received their care in a separate system, primarily through institutional care. But with the closure of institutions and an emphasis on community inclusion in Canada over the last several decades, those with developmental disabilities are expected, like everyone else, to access physical and mental health care in their home communities.

Unfortunately, their health needs are often not adequately addressed. And our inability to see this population is costing the health system enormously.

Perhaps because of the complexity of their health needs (physical and mental), this group is more likely to have repeat emergency department visits and to be re-hospitalized than other individuals, a sign that the connection between community and hospital-based care for those with developmental disabilities is not what it should be. And the Ontario Ombudsman released in August 2016, “Nowhere to Turn,” a disturbing report based on a four-year investigation into the care and treatment of adults with developmental disabilities, which found that this population was also very likely to experienced homelessness, incarceration, abuse and neglect. As well, it reported, the families of these adults were often subject themselves to burnout.

Moreover, recent research from the Centre for Addiction and Mental Health and Institute for Clinical Evaluative Sciences in Toronto shows that 45 percent of Ontario adults with developmental disabilities are diagnosed with a psychiatric disorder and at least 6 percent have an addiction.

A national study of hospitalizations, published in the Canadian Journal of Psychiatry, found that almost half of developmental disability hospital admissions were psychiatric hospitalizations. And, the majority of those were youth and young adults. This is in stark contrast to people without developmental disabilities, among whom hospitalization for psychiatric disorders tended to be later in life.

Sadly the members of this this population, complex and vulnerable as they are, are frequently treated by mental health and general health providers who are not familiar with their disabilities and do not feel comfortable working with them. Indeed, training for health care providers on the mental health needs of this group is very limited in Canada.

So, what needs to be done to help policy-makers finally see this invisible population, so they can better support the mental health system to address its needs?

As a start, our mental health promotion must include adults with developmental disabilities, since we know they are prone to mental illness and addictions.

We should invest in screening for mental health issues and early intervention in this population, and we should be taking active measures to help those with developmental disabilities get accurate diagnoses and receive accessible evidence-informed treatments and supports. This means that all mental health care providers should receive the basic skills and knowledge required to support people with developmental disabilities.

In order to reduce or avoid repeated emergency visits and lengthy hospitalizations, we need to invest in more outpatient-based mental health care. Mental health and social service sectors across the country must work together with each individual in this population who is hospitalized, to ensure they are safely discharged and receive the mental health support they need.

Finally, we should always keep in mind the phrase “nothing about us without us.” If there is to be a good, patient oriented solution, people with developmental disabilities and their families need to be at the table, alongside the other mental health or addiction groups with expertise. It makes good policy and good economic sense to ensure individuals with developmental disabilities are included in mental health plans, strategies and funding.

It’s time the needs of those with developmental disabilities and their families are seen and met.

Retrieved from:  http://policyoptions.irpp.org/magazines/april-2017/the-invisibility-of-people-with-developmental-disabilities/

October 3 2017 Supports and Services meeting-minutes

October 3 2017 Society-meeting-minutes

The welcome news that the Local Drug Action Team (LDAT) led by Tony Brown has been successful in securing funding to Make FASD History provides much-needed opportunity for public education about the devastating effects of foetal alcohol spectrum disorder (FASD) in our community.

However, it raises two questions.

First, why does the health-conscious Newcastle public know so little about the burden of morbidity from FASD: that is, the emotional cost to families with affected children and the lifetime cost to the community of the person with intellectual disability from FASD which is estimated to be in the order of several million dollars.

The effects of alcohol use during pregnancy on the embryo and foetus were first recognised in the 1960s and I recall making the diagnosis of FASD in the mid-1970s. After I retired from the Newcastle medical school in 2005, I worked for almost 10 years in the remote Kimberley region. In my clinics in Fitzroy Crossing and Halls Creek I saw many cases of children with FASD, and, from a headcount of these cases among the known population of children under the age of five, I estimated that the prevalence was at least one quarter. Several years later, the Lililwan Study conducted by Dr James Fitzpatrick confirmed the extent of intellectual disability.

This evidence for an epidemic of brain damage to unborn children was a key plank in the advocacy for alcohol restrictions that were implemented in 2007 in Fitzroy Crossing. The courage of the Aboriginal cultural leaders in their fight against the river of grog was the event that precipitated the federal government’s action for this problem, with Newcastle LDAT now a beneficiary. We should be inspired by the example of the brave women of Fitzroy Crossing who confronted the shame of the effects on their grandchildren of their relatives’ drinking in pregnancy.

In the wider community, silence from shame and guilt are but part of the reason why FASD is so little recognised: previous reluctance of midwives to ask about alcohol abuse, and ignorance among young doctors as to the possibility of FASD being a cause of behavioural and developmental problems, have conspired with this silence.

Second, why is there absence of outrage over this entirely preventable condition? This  is in contrast to the justifiable public outrage about the health effects of groundwater pollution around Williamtown; from residual lead contamination of soil at Boolaroo; and from the effects on lung disease from air pollution from coal dust along railway lines and downwind from the huge open-cut mines of the valley.

Outrage reflects the degree of personal choice to exposure to the risk, given that the risk is known. It is, therefore, maximal when the water we drink or the air we breathe is polluted or poisoned. In contrast, having a drink with friends is a personal choice for us all, yet for young women who may not be aware of the risk, it can have a devastating effect on their embryo.

This, therefore, presents an ethical conundrum, for if my outrage is the cause of your shame or guilt, is it morally justified? To resolve this we have to sublimate our concern in a constructive way through community awareness so that young women are supported by their peer group in choosing to avoid alcohol when planning a family, and in avoiding an unanticipated conception when drinking.

Retrieved from: http://www.theherald.com.au/story/4975500/why-silence-is-hiding-fasds-devastating-impact/