ReMed PANS & PANDAS Clinic

05/02/2020

*OUR PHONE LINE IS BACK*
We apologise for the technical issues we had earlier. Our phones were offline approximately between 3pm-7pm today. If you were unable to get through at this time, please contact our reception team now on 1300 173 633 so we can assist you :)

05/02/2020

*PHONE LINES ARE CURRENTLY DOWN*
If urgent, please e-mail us at admin@remed.com.au

14/12/2019

**RESEARCH STUDY**

OCCUPATIONAL PERFORMANCE IN CHILDREN WITH PANS/PANDAS*
Researchers in occupational therapy at the University of Newcastle, NSW, Australia, are exploring the impact that PANS/ PANDAS flares has on a child’s participation in daily life activities.

If you have a child with a PANS/ PANDAS diagnosis, and they are aged between 5 and 12 years, and you live in either Australia, UK, USA, Canada, Ireland or New Zealand, then you are invited to participate in this study.

If you are interested in finding out more about this study, please click on the following link: https://is.gd/PANS_Study

This research is being coordinated by:
Michelle Newby, PhD Candidate (michelle.newby@uon.edu.au)
Shelly J Lane, PhD, OTR (shelly.Lane@colostate.edu)
Kirsti Haracz, PhD (kirsti.haracz@newcastle.edu.au)
Janice Tona, PhD, OTR (tona@buffalo.edu)

*PANS stands for Paediatric Acute-Onset Neuropsychiatric Syndrome; PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Strep infections.

This project has been approved by the University’s Human Research Ethics Committee, Approval No. H-2019- 0284.

05/11/2019

[OBSESSIVE COMPULSIVE DISORDER]
By Samantha Bake, Nutritionist

I’ve just been watching an episode of Insight on SBS Australia that discussed Obsessive-compulsive disorder (OCD). It is a form of anxiety disorder where people have “recurring, unwanted thoughts, ideas or sensations (obsessions) that make them feel driven to do something repetitively (compulsions).” The difference between the focused thoughts or repetitive behaviours we might all occasionally experience and people with OCD is that for them the thoughts, routines, and behaviours are unwanted, disrupt their daily lives and if they aren’t able to complete them can cause major distress.

In Australia it is thought at least 2% of the population or more than 500,000 people have OCD and globally it is recognized as the "fourth most common psychiatric disorder, after phobias, substance abuse and major depression". Although I do see adults with OCD, I most often come across it in my paediatric patients in the ReMed PANS & PANDAS Clinic.

After taking a through case history we measure symptom severity by using the Children's Yale-Brown Obsessive-Compulsive Scale. Initial treatment relates to decreasing neuro-inflammation and supporting the nervous system to lessen the obsessions and compulsions. One of the ways I do this is with n-acetyl cysteine which has been shown to normalise glutamate transmission in the central nervous system. Abnormal glutamate metabolism has been shown to be associated with obsessive-compulsive disorder.

From there it is always an individualised process to determine any other contributing factors. If you would like to find out more about the use of N-AC in in OCD, PANS or PANDAS, book an appointment by phoning 1300 1REMED or visit www.remed.com.au.

https://www.beyondblue.org.au/the-facts/anxiety/types-of-anxiety/ocd

18/10/2019

[NOT BAD BEHAVIOUR]
By Samantha Bake, Nutritionist

For those of us that work with PANS/PANDAS patients we know it is a medical disorder, not “bad behaviour” or “poor parenting”. The American PANDAS Network suggests that 1 in 200 kids may in fact have PANS and that rather than being uncommon it is just under-diagnosed or mis-diagnosed as Tourette’s Syndrome for example.

This means I am always interested when I come across research such as this Danish population-based cohort study which looks at the prevalence of OCD and tics post streptococcus infection. The results analysed 17 years of data and concluded there was a statistically significant correlation between ANY infection but especially post streptococcus infection and increased risk of neuropsychiatric disorders.

“The study population consisted of all 1, 067, 743 individuals born in Denmark between January 1, 1996, and December 31, 2013, and followed up for up to 17 years, corresponding to 7.9 million person-years at risk. Of the 519, 821 girls and 547, 922 boys in the study, 349, 982 had positive test results at least once. Individuals with a positive streptococcal test result had an increased risk of any mental disorder, particularly of OCD and tic disorders, compared with individuals without a streptococcal test.

Furthermore, the risk of any mental disorder and OCD was more elevated after a streptococcal throat infection than after a nonstreptococcal infection. Nonetheless, individuals with a non-streptococcal throat infection also had an increased risk of any mental disorder, OCD, and tic disorders.”

https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2629065

15/10/2019

[NUTRIENTS FOR NEUROINFLAMMATION]
By Samantha Bake, Nutritionist.

N-acetyl cysteine
If you’ve been watching the news lately you would probably think that N-acetyl cysteine (N-AC) is a brand-new discovery, a wonder drug! For those families that are PANS (pediatric acute onset neuropsychiatric syndrome) or PANDAS patients at our clinic, you will know that N-AC (a variant of the amino acid L-cysteine) is a common supplement that we’ve been recommending for years. Why?

Not only is it a cost-effective therapy, N-AC has been shown to normalise glutamate transmission in the central nervous system. Abnormal glutamate metabolism is associated with obsessive-compulsive disorder; a common symptom for kids with PANS or PANDAS.

As well as in OCD, I use N-AC to support neurotransmitter production and liver function, in asthma, allergies, PCOS, to help people stop smoking, as a mucolytic and to breakdown bio-films in bacterial infections. N-AC also has the benefit of reducing oxidative stress and has antioxidant and anti-inflammatory actions. As the rate-limiting step in glutathione production it has particular benefit in this paediatric presentation.

If you would like to find out more about the use of N-AC in PANS or PANDAS, book an appointment at our ReMed PANS & PANDAS Clinic by phoning 1300 1REMED or www.remed.com.au.�https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4423164/

09/10/2019

Is it Tourettes Syndrome (TS), Tics or PANS?
Written by Samantha Bake, Nutritionist.

While we’ve all seen those stereo-typed movie portrayals of Tourettes, in real life it is a spectrum disorder where the severity and form of tics varies widely from annoying through to debilitating. The most severe form of tic disorder, while TS was first described in 1825, its pathogenesis isn’t really understood - there may be a genetic component, it may come from a physical or biochemical metabolism abnormality in the brain or post-Streptococcal infection.

TS is often one of the first diagnoses considered when PANS and PANDAS cases present to their doctor with severe tics. TS is characterized by both motor (physical) and vocal tics, is three to four times more likely to occur in boys than girls, begins between the ages of 2-21 (usually 2-12) and lasts a life time although symptoms may lessen in the late teens. Research suggests as many as 1 in 100 school children in Australia have TS. Mild forms may be mis-diagnosed with obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD).

When someone comes to see me with a TS diagnosis I take a full and complete case history and generally start treatment with the same focus as for my PANS patients - protecting the brain and decreasing neuroinflammation. In the case of TS I also want to make sure that they have all the cofactors for neurotransmitter production to help decrease the tics. From there it is an individualised process based on their specific health history and symptoms.

National Tourette Syndrome Awareness Week 6–12 May 2019 Click the tile below to view TSAA's TAC'TICS Program View to hear the story of TAC'TICS: Employable Me, series 2, premieres on Tuesday 9 April at 8.30pm on ABC & ABC iview The award-winning and critically acclaimed documentary series Employab...

30/09/2019

[DOES MY CHILD HAVE A TIC?]
By Samantha Bake Clinical Nutritionist

Tics are short-lasting sudden movements (motor tics) or sounds (vocal tics) that occur randomly during otherwise normal behaviour. They are often repetitive and may involve numerous repetitions of the same action eg eye blinking, nose twitching or throat clearing. Rather than involuntary actions they are considered to be unvoluntary– the individual can suppress their actions for a while, but it becomes increasing difficult and causes a discomfort that is only relieved by performing the tic.

While I commonly work with tics in my PANDAS patients people of all ages can experience tics and experts suggest around 25% of children in general may experience them. It tends to be more prevalent in boys than girls and stress, sleep deprivation, excitement and temperature extremes can affect their severity and occurrence.

The most common form, affecting between 5-25% of school-aged children is Transient tic disorder – one or more tics present (usually motor tics) for at least one month but less than a year. Kids will often experience more than one episode of transient tic disorder and the tics they experience may vary between episodes. Chronic motor or vocal tic disorder as the name suggests are tics that persist beyond 12 months without a tic free period, typically taking 4-6 years to resolve.

While it’s not really understood what causes tics physical and chemical abnormalities in the brain are the main suspects. So, in terms of treatment it is often very similar to how I treat tics in PANDAS patients – by decreasing neuro-inflammation and ensuring a regular supply of pre-cursor nutrients for neurotransmitter production.

I offer free 20-minute consultations if you would like to discuss how I may be able to help with you or your child’s symptoms. Call 1300 1 REMED or visit www.remed.com.auto make a booking.

25/09/2019

[FOOD RESTRICTION IN PANDAS and PANS]
By Samantha Bake Clinical Nutritionist

In PANs and PANDAS reduced or restricted food intake is a defining diagnostic symptom. It has a very sudden onset and is often severe – becoming increasingly restricted as time goes on. While it can be taste, texture or smell related just as often it is an obsessional fear of contamination or such an intense fixation on the possibility of choking/swallowing or vomiting that there are documented cases of kids who simply refused to eat.

Toufexis et al in their 2015 study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340640/) documented contamination fears that ranged from germs, poison, allergens, bleach, drugs, the personality of whomever had prepared it through to their own saliva causing them to refuse to swallow.

HOW DO I WORK WITH THESE PATIENTS?

After taking a through case history we measure symptom severity by using the Children's Yale-Brown Obsessive-Compulsive Scale. Initial treatment relates to decreasing neuro-inflammation and supporting the nervous system to lessen the obsessions and compulsions. From there it is always an individualised process, for example food intolerances may be involved or a zinc deficiency which affects taste and texture sensations.

I am happy to have a free 20-minute consultation if you would like to discuss your child’s concerns with food and how a Clinical Nutritionist can help. Call 1300 1 REMED or visit www.remed.com.auto make a booking

Objective: Sudden onset clinically significant eating restrictions are a defining feature of the clinical presentation of some of the cases of pediatric acute-onset neuropsychiatric syndrome (PANS). Restrictions in food intake are typically fueled by ...

17/09/2019

[GOING GLUTEN FREE]
Samantha Bake Clinical Nutritionist

What?! You want us to go Gluten Free?
Being told that you need to cut gluten out of your diet can be a bit nerve wracking for families. What will I/ we/my child eat? Everyone in the family isn’t going to want to do that, I don’t want to have to cook 2 meals! It’s not going to taste the same! I don’t like to cook, it’s going to be too hard. But what about our favourite meals? I don’t have time to spend all day in the kitchen.

I’ve heard all these comments and more, however, in my role as a Clinical Nutritionist I aim to help make the change as smooth as possible. The basis of your diet – vegetables, fresh meats, seafoods, eggs, milk, fruit, fats/oils, legumes, nuts, seeds, rice and corn are NATURALLY GLUTEN FREE and boosting your whole food intake, especially vegetables, is always a beneficial thing.

There will be more label reading involved, especially at the beginning. We’re lucky in Australia that gluten must be highlighted in the ingredients listings. Other things to look out for are rye, oats, barley, malt and brewer’s yeast while bulgar, couscous, farina and seitan are all made from wheat. Sites like https://www.glutenfreeeatingdirectory.com.au can also provide information on GF brands and restaurants.

Substitutions
- swap Milo for hot chocolate
- wheaten cornflour as a thickener for corn-based cornflour
- icing mix for 100% icing sugar
- regular flours for GF mixes
- instead of crackers with your hommus/guacamole have vegetable crudites or sakatas.

If you would like a one-on-one appointment to review your current diet and symptoms to see if swapping to gluten free may be beneficial you can book an appointment at ReMed Hawthorn by calling 1300 1 REMED or visit www.remed.com.au

Find gluten free eateries & products. Carefully selected, with write-ups for every business

11/09/2019

[GLUTEN FREE TO MANAGE PANS/PANDAS]
By Samantha Bake Clinical Nutritionist

When all humans eat gluten, the gaps between the cells lining your gastrointestinal tract briefly widen. This happens because in the presence of gliadin (from gluten) levels of the protein zonulin increase which opens the gaps between cells of our gut lining.

You are probably wondering how that relates to PANS. Well, the blood-brain-barrier was once thought to be impervious to pretty much everything - it is the main defence for the brain, protecting it from toxins and maintaining the necessary level of nutrients for normal function so maintaining its integrity is essential for optimal health.

Research has now shown that zonulin (and heavy metals) can also cause permeability of blood brain barrier which is a significant contributor to neuroinflammation, increased toxin load and development of brain disorders.

So, by excluding gluten containing foods from the diet it drops zonulin levels, which in turn decreases gut and blood brain barrier permeability, allowing our treatment a chance to decrease neuro-inflammation and normalise immune system reactions, managing common PANS/PANDAS symptoms.

I offer free 20-minute consultations if you would like more information on how I work with families. Call 1300 1 REMED or visit www.remed.com.auto make a booking.

03/09/2019

[BRAIN ON FIRE]
(otherwise known as neuroinflammation)
By Samantha Bake Clinical Nutritionist

The medical definition of neuroinflammation is an inflammatory response in the brain and/or spinal cord which may be caused by autoimmunity, infection, traumatic brain injury, traumatic/chronic stress or toxic metabolites.

With increased neuroinflammation comes increased blood-brain-barrier permeability which long term means the brain doesn’t have the same stable environment for optional brain function or the same level of protection from pathogens or chemicals which usually wouldn’t be able to cross that barrier.

Neuroinflammation and blood-brain-barrier permeability play a role in diseases like Alzheimer’s disease, multiple sclerosis, dementia, auto-immune encephalitis, PANS and PANDAS. Protecting the brain and decreasing systemic and neuroinflammation are major components of initial treatment. This is done through dietary changes and use of supplements taking into consideration each person’s individual health history.

I offer free 20-minute consultations if you would like more information on how I work to put on the fire of inflammation. Call 1300 1 REMED or visit www.remed.com.auto make a booking.