Developmental Language Disorder and Mental Health

Will every person diagnosed with Developmental Language Disorder (DLD) struggle with their mental health?

How do you support a loved one with mental health challenges?

What do health professionals and educators need to know about working with people with DLD who also have mental health issues?

In this very practical episode of The Talking DLD Podcast we are talking Developmental Language Disorder and mental health with Melanie Cross, speech and language therapist.

Melanie Cross is a speech and language therapist. She has worked with children and young people with mental health needs for many years. She is the author of ‘Children with Social, Emotional and Behavioural Difficulties and Communication Problems’ , 2nd edition. She is also an Advisor on child mental health, and she was lead author of the Royal College of Speech and Language Therapist’s Clinical Guidelines on Social Emotional and Mental Health. Melanie graduated from Reading University in 1984 and gained an MPhil in undetected communication problems in children looked after by the local authority in 2001. In 2017 she became a Fellow of the Higher Education Teaching Academy. She is also a trainer, supervisor and a Video Interaction Guider.

Continue reading….

Depression Causes Inflammation and Metabolic Imbalances

For those in the community who find themselves piling on weight with or without of exogenous sex hormones, could this be a more probably cause?

Scientists have discovered that depressed individuals show higher levels of inflammation as well as elevated fat concentrations in their bloodstreams. They also demonstrated that people with anxiety don’t have the same biochemical effects, despite the two psychological conditions being regarded as very similar.

More than half of people living with depression have a history of anxiety, and the two conditions have strong parallels in terms of symptoms, risk factors, and therapeutic interventions. However, the physiological effects of these disorders have yet to be fully mapped. Researchers from the Netherlands obtained samples from over 300 patients with depression and another 500 with anxiety, as well as those who have been diagnosed with both conditions and healthy controls. They used a powerful medical imaging technique known as nuclear magnetic resonance to identify links between metabolites in the blood samples and symptoms of either depression or anxiety.

Hilde de Kluiver, one of the study’s senior authors said: “Firstly we found that the depressed group showed evidence of greater inflammation which was not seen in the anxious group. We also found that the depressed group had very different amounts and types of lipids in their blood.”

“For example, depressed people had high levels of triglycerides, but lower levels of omega-3-fatty acids. In contrast, those people who had anxiety disorder had a lipid composition very similar to the healthy control group.”

Depression is a common mental disorder, affecting an estimated 264 million people worldwide. Chronic and severe depression is a serious health condition, reducing the sufferer’s quality of life significantly and can lead to suicidal thoughts. This study shows how depression has a unique and direct impact on the immune system as well as how lipid metabolism is altered in these patients.

This finding is a breakthrough in finding more effective clinical interventions to support patients with depression. “Our group is now planning to test whether depressed people with altered inflammation might respond to treatment with anti-inflammatory drugs”, said de Kluiver.

Continue reading……..

Children with ADHD can now be prescribed a video game

The American Food and Drug Administration (FDA) permitted marketing of the first game-based digital therapeutic device to improve attention function in children with attention deficit hyperactivity disorder (ADHD). The prescription-only game-based device, called EndeavorRx, is indicated for paediatric patients ages 8 to 12 years old with primarily inattentive or combined-type ADHD who have demonstrated an attention issue.

EndeavorRx is indicated to improve attention function as measured by computer-based testing and is the first digital therapeutic intended to improve symptoms associated with ADHD, as well as the first game-based therapeutic granted marketing authorisation by the FDA for any type of condition. The device is intended for use as part of a therapeutic program that may include clinician-directed therapy, medication, and/or educational programs, which further address symptoms of the disorder.

The EndeavorRx device offers a non-drug option for improving symptoms associated with ADHD in children and is an important example of the growing field of digital therapy and digital therapeutics. The FDA is committed to providing regulatory pathways that enable patients timely access to safe and effective innovative digital therapeutics.”

Jeffrey Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health

ADHD is a common disorder that begins in childhood, affecting approximately 4 million children ages 6-11. Symptoms include difficulty staying focused and paying attention, difficulty controlling behaviour, and very high levels of activity. According to the Centers for Disease Control and Prevention, diagnosis of ADHD should be conducted by a trained health care professional and follow an evaluation of symptoms or pattern of symptoms, such as inattention, hyperactivity, and impulsivity that interfere with functioning or development.

Continue reading……….

COVID19 Journals: The lived experience of the Genetic, Undiagnosed and Rare Disease Community

A collaborative research project between Australian Genomics,
Murdoch Children’s Research Institute (MCRI)
& Genetic Support Network of Victoria (GSNV)

  • Do you have a Genetic, Undiagnosed or Rare Disease?
  • Do you care for someone with a Genetic, Undiagnosed or Rare Disease?
  • Are you part of a Support Group for people with a Genetic, Undiagnosed or Rare Disease and their carers?

If you answered yes to any of these questions, we would like to hear from
you. As we shift our lives to accommodate for the restrictions placed on us due to Covid-19 people are responding in different ways ranging from concern & inaction to creatively developing workarounds as best we can.

We are looking for people, over 18 years old, to keep a journal of their
thoughts & experiences over the next year as we look forward to coming
out of the other side of this pandemic

We will contact you once a month for the next year to ask you to share any
journal extracts you are happy to send over . All documents will be stored
securely in password protected computers & anonymised.

If you would like to know more please contact:
C19Journals@mcri.edu.au
Ph: (03) 8341 6315
Dr. Stephanie Best, Senior Research Fellow, Murdoch Children’s Research Institute
Monica Ferrie, Chief Executive Officer, Genetic Support Network of Victoria

Have you got the Covid Blues?

Who doesn’t need someone to talk to during these stressful times and who better could that someone be but someone who’s travelled your road either before you, along side you, or following on behind. If you live in Australia and are a member of either Intersex Human Rights Australia or Intersex Peer Support Australia and you would like would like to participate in these weekly catch-ups with an Intersex community you can do so by clicking on the button and following the prompts. We are all in this together.


Intersex Peer Support Australia and Intersex Human Rights Australia are Not For Profit Organisations

A World Without Meaning.

Sadly the XXY community is awash with people like Callie where parents, siblings, loved ones and work colleagues complain about not “getting us” most within the community are medicated with anti depressive and /or amphetamines, resulting in our creativity being quenched. Those who are impacted struggle to fit in, to blend but, as her grandfather pointed out we live in an un-blendable society albeit mostly one with little time for people who are different to themselves.

The Lived Experience of 47XXY (Klinefelter Syndrome): A Narrative Review of the Literature

It’s really great when researchers show this kind of initiative, almost like filling in the blanks and stating more clearly what renowned researchers wish they could say but who feel compelled to stick within the guidelines of grants and other less obvious monetary interests of their work, which is sad, because we never get to understand the whole picture. and from an XXY perspective that means continually ignoring the whole Elephant and focusing only on the tail. An additional bonus here is the work is peer reviewed by two power-horses of XXY research both of whom are long time affiliates of The Arrhaus University Denmark, a world renowned centre for understanding the underpinnings not just of 47XXY but also of other sex chromosome variations.

As a community we owe it to ourselves to ask uncomfortable questions or questions abounding areas researchers might not otherwise have given any thought to. Intersex Human Rights Australia (previously known as OII Australia) was one organisation who asked the lead researcher Dr Amy Herlihy who was conducting research on behalf of Andrology Australia “Screening for Klinefelter’s Syndrome” if they were just looking for male identified XXY’s or were they also interested in females, this was the reply

So the moral of the story is, if you don’t ask the question, not only will you never know the answer but it will never be recorded as having been asked.

The XXY Project

Klinefelter syndrome (KS) or 47, XXY is a chromosomal disorder in males. Persons with KS have an additional X chromosome creating karyotype 47, XXY and 46, XY/47, XXY mosaics. According to existing epidemiological studies KS is one of the most common genetic disorders, affecting ~1 in 500 men. Whilst there can be phenotypic variation between individuals, physical traits associated with the syndrome can include small testes, a less muscular body, less facial and body hair, broader hips, and increased breast tissue. This physiological background and associated traits can generate questions relating to gender identity and a proportion of KS individuals will not identify as male, instead identifying as female, non-binary or intersex.

Learning difficulties, low self-confidence and issues relating to social interaction are also reported in relation to those with KS. Whilst a number of physical and developmental issues are therefore associated with KS, infertility is a common feature of the disorder. Estimates suggest that over 95% of those with KS are infertile, although some men with KS can seek to have biological children using advanced assisted reproductive technologies such as surgical sperm retrieval followed by intracytoplasmic sperm injection (ICSI). Such approaches are however high risk and uncertain, and those with KS may also be faced with decisions about the use of donor sperm, adoption, or remaining childless. This review examines the existing psychosocial evidence around the impact of KS, exploring what we know about KS and its relevance for health care for this group.

This narrative review suggests that a lack of or late diagnosis remains a critical problem in relation to KS. Whilst prenatal screening techniques may improve future diagnosis, current low levels of diagnosis remain problematic, particularly for the possibility of improving physical and mental health outcomes. This is particularly important as those with KS are reported to have poorer health outcomes than the general population across a range of measures, including quality of life and comorbidities result in a decreased life expectancy for those with the disorder. The perception that all persons with KS will demonstrate “textbook” signs is viewed as compromising the ability of patients to obtain a diagnosis. Early diagnosis allows for more extensive options for children and adolescents to preserve their fertility, which is seen as one of the key concerns for patients, although this remains an area in need of further research. Diagnosis itself can be a relief for patients, which is similar to other long-term health conditions although the literature details that uncertainty can also spring from a KS diagnosis, perhaps connected to the perceived lack of knowledge by HCPs reported within the literature.

The experience with healthcare for persons with KS is described as poor, ranging from a lack of information to misinformation, due to a perceived lack of expertise among HCPs around KS. There is a consensus in the literature around the importance and value of the multidisciplinary team as a means of providing care to KS patients. Coordinated approaches to care are currently seen to be lacking despite evidence of the effectiveness of such approaches being noted in relation to other illnesses. Questions of gender identity are noted within the literature but not extensively explored; how those with KS identify and how this then intersects with their experiences of healthcare remains an important area for future consideration.

Given the prevalence of KS within the population, greater research focus on the disorder in the future, particularly in relation to reproductive health and the psychosocial impact of KS, would have a significant impact for patients and their families. There are inevitably limitations to a short review of this nature, and not all papers which may be relevant to KS, particularly those which are more clinically focused appeared within our search, thereby illustrating a well-recognised limitation of literature keyword search based review algorithms. The voices of those with KS appear to be currently lacking from the literature, which could be further marginalising, so future research should attempt to capture the lived experience of those with KS and use participatory methods where possible to embed this lived experience centrally within research. Developing a priority setting partnership for those with KS to identify and rank key research areas for the future would be fruitful, and co-production of research agendas would help with inclusion of this otherwise hidden group. Attempts to move forward research and care for those with KS should then begin with a central focus on what matters to those with KS and seek to make positive improvements to their diagnosis, outcomes and encounters with healthcare professionals.

Footnotes

Whilst we refer to men within this paper, given that primarily those with KS will identify as male, we are aware that not all will identify as male, and have chosen this terminology for clarity and to reflect the medical literature on this topic.

Continues reading…….

What We Would Like Doctors To Know About XXY

If you are a Doctor

And consider yourself an expert in all things XXY, then you will never learn anything about us. Adult XXY’s often have adversarial relationships with physicians. If you have a patient like that, don’t take it personally, it’s probably because the medical community has treated us so badly for the last several decades. When we meet a doctor for the first time, we might be wary. We are assessing you as a potential doctor as you are assessing us as a potential patient.

Don’t assume that by having gone to Medical School you are more educated than those of us who are XXY. When you went to medical school research surrounding XXY was smaller than a paragraph and most all of it was negative.

I need my doctor to keep an open mind. Their main oath is to do no harm thus I expect them to be interested in new studies on XXY and to educate themselves about the latest research both in hard data and testimonials of XXY people. This means if I say testosterone is making me ill or ask for a trial on estrogen, then please explain to me why or why not without judgement and based on my medical tests. Please respect that I know my body better than you and I am in tune with how I feel.

Remember I am a human being first and not a condition, disease, anomaly, freak or abnormality of nature. I am so much more than my chromosomes and my physical body parts. Care for my body, keep it healthy but don’t try to manipulate it or change it with hormones or surgery to how you think it should be without asking me first.

Avoid assumptions. Just because I may also have a phallus, don’t assume that the best solution is to cut off my breasts. Maybe my breasts are an intricate part of maintaining my inner sense of well-being.

I need my doctor to show me how to give a self-breast exam for breast cancer and teach me how often I should do this.

Take the time to explain to me the effects of virilising that testosterone will have on my body and allow me to decide if I want to incorporate body and facial hair, male pattern baldness, and a hyper sex drive into my being. When you are considering any treatment or procedure, be sure to also tell me what will happen if I choose to do nothing.

Just because I choose to identify as male and take testosterone does not mean I am no longer XXY or that my actual gender identity is any less multifaceted than before. Testosterone does not change my genes. Allow me to talk about how I experience the XXY quality of my being in an open, non-judgemental place of safety.

Allow me to talk about how I experience the XXY quality of my being in an open, non-judgemental place of safety.

XXY’s identify in all genders, inclusive of Male, Female, Non-Binary, to everything in between and beyond. The most important care you can afford an XXY individual is one that’s appropriate for them.

Talk to me, not at me and not just about me with my parents. I can understand things if they are explained to me, and I can make decisions about my own body. Be honest with me. When examining me, first ask for my permission so I know that you recognise it is my body and my choice.

Don’t speak in absolutes or tell me how I am going to turn out

Always remember that my needs come before the needs of my parents, my doctors, or society. If you are unsure about my needs, proceed with caution, especially in areas that cannot be undone, such as with a mastectomy.

Ask to see me without my parents always being in the room.

Allow me or my family to disagree about a particular treatment you wish to try. Be willing to be a part of a respectful negotiation process about any disagreements of treatment.

Celebrate my successes with me. Ask me about my hopes, dreams, and plans.

Don’t try to fix me with hormones or surgical intervention before I am old enough to understand.

Don’t fix my gender without helping me to understand who I am.

Don’t try to fix me with hormones or surgical intervention before I am old enough to understand. Wait until I am old enough to make my own decisions about my body and my identity.

Things I look for in a doctor

  • Curiosity.
  • An ability to actively listen.
  • Provides cooperative healthcare as in co-relationship, not a doctor “doing” something to me, but a doctor working with me to help me achieve my optimum health.

 

 

Acceptance

An excerpt from a project by Barbi Gracner, reposted here with the kind permission of the author, someone whom we consider will one day shine a bright light on the rich diversity that is an XXY life.

Since childhood, we all learn to wear different masks. They grow with our skin. And it’s hard for us to determine who we are on the other side of the mask. What is mine in me, besides the expectations of others? And fear arises. What happens if I take off a mask?

I helped others, but I couldn’t help myself

I took off one of my masks when I knew that I am intersex. I was scared. I hated my androgynous body. I hated the world, which denied me, erased my non-binary identity, saying that there is only male and female. I tried to find another mask. Instead, I found the void.

And I decided to find other intersex people because I thought it could help me find my face through their faces. But it was a hoax.
Yes, I found the intersex community. I became an intersex activist. I helped others, but I couldn’t help myself. I didn’t find my face; I was disappointed. And I realized that I was always looking for it in the wrong place.

Love the beauty in yourself, and you can see this beauty in the world around you

Under the mask, there is always your own face. It takes courage to admit it, accept and love. Love the beauty in yourself, and you can see this beauty in the world around you. It is difficult to help others if you don’t have love in yourself.

So, I just started my journey …

Thanks to everyone who is in my heart, despite the distance separating us.