Researchers believe that PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep antibodies attack the brain and produce behaviours. The presence of a strep infection (and other infections) correlates with the presence of the behavioural disorder.

PANDAS was officially identified in the late 1990s, and in 2011, the NIMH proposed criteria for a related disorder known as PANS: Paediatric Acute-Onset Neuropsychiatric Syndrome. PANS propose that behavioural disorders can be triggered by a number of infections, not just strep. PANDAS is referred to more often than PANS because it is a more established diagnosis, but the principles of the two disorders are basically the same.

How to understand PANDAS

To get a grasp of how PANDAS affects behaviours, we can go back to say the 1950s and see how strep was linked to the movement disorder Sydenham’s Chorea (St. Vitus' dance): a characteristic series of rapid movements without purpose of the face and arms. This can occur very late in the disease for at least three months from the onset of infection.

So while we think of strep as giving our children sore throats and temperatures, being physically ill in the traditional sense; there are times however when a child’s concerning behaviours can be the symptoms of strep, or another infection.

For example, rheumatic fever, an inflammatory disease that can involve the heart, joints, skin, and brain mostly affects young people and is caused by a streptococcal infection, in which abnormal movements, sometimes called “choreiform movements” are seen. These are irregular, jerky, involuntary movements in both the upper and lower extremities. These symptoms are noticed usually after the strep infection appears to have cleared up – similar to the behaviours described in Sydenham’s Chorea.

What to look out for in PANDAS

It is usually the case that most children with PANDAS will go to bed one night and wake up the next morning and present with full-blown behavioural symptoms. It might be that there were early behavioural hints, known as micro-episodes, and so the appearance of such symptoms were likely not enough to spot that an underlying infection was at the root of this “sudden onset”. David Band, MD says: “There may be some minor behaviours in the background, perhaps even for years, which suddenly explode. It’s as if someone abruptly turns up the volume to an excruciating level.” So here you can see that behaviours following strep infection are probably brewing up, as described in other infections discussed above, and before full-blown PANDAS presents itself quite dramatically.

Trusting your instincts

As parents, we need to trust our instincts when it comes to PANDAS because nothing about it is black and white. Medicine is just at the beginning of recognising this disorder, so PANDAS is still in its infancy. There isn’t a checklist yet for whether your child has PANDAS, and there isn’t an established protocol or a series of easy diagnostic steps to follow. If your child’s behaviours are concerning, and you are not satisfied with the answers you have received to explain those behaviours, then you are right to wonder if an infection might be the root cause of what’s troubling your child. Basically, follow your instincts.

Behavioural changes

The following lists behavioural changes that could be the sign of PANDAS or PANS. If you are concerned that your child is experiencing any of these difficulties, and especially a combination of more than one, then these are things to note down, making a point to notice whether they are becoming more prominent.

- Obsessions

- Compulsions

- Tics

- Regressions

- Touching, hearing, sight, taste, and smell issues

- Refusal to eat

- Inability to concentrate

- Impulsivity/distraction

- Separation anxiety

- Bedtime fears

- Rapid mood swings

- Episodes of stuttering

- Raging, sobbing, screaming

- Threatening or worrying about harm

- Irritability

- Sleep disturbance

- Urination issues

- Changes in handwriting

- Joint paint – consider also rheumatic fever, or Lyme disease

- Personality changes at home and/or school

Three main concerns

Three main concerns are: (1) Separation Anxiety - this is more extreme than the norm, and worse during each episode, e.g. leaving the child at the school gates, bedtime etc. (2) Getting Stuck/Regression – each child is different, but it seems the simplest tasks, the ones taken for granted, have become difficult. The child also regresses, for example, they may start wetting the bed. (3) Tics – tics are four more times as likely to show up in boys. Some of the most common are: eye blinking, facial grimaces, coughing, snorting, tapping, neck rolling, head jerking and sneezing.

What OCD looks like in a PANDAS child

From the list above, two categories of behaviours that account for a large number of PANDAS children are obsessive compulsive disorder (OCD) and those with motor and verbal tics. OCD can include repetitive behaviours, excessive fear of germs, unwanted thoughts, hoarding, and can also include hair pulling, and eating disorders. For a PANDAS child there are often a set of “rules” that dictate the behaviours, and those rules may prohibit the child from discussing the behaviours. The “rules” are intrusive thoughts which accompany the fear of harm to oneself or others if those rules are broken. Basically the child is dominated by OCD.

More about what OCD might look like?

The child gets stuck and may continue to repeat the same phrase over and over, or become obsessed with particular numbers, colours, items, sounds, or symmetry. Eating patterns suddenly change, which include food preferences, appetite loss, chewing food a certain number of times. Fear of contamination which includes food, clothes, even the air, in which your child may only want to breathe in certain places, and will hold their breath in “non-breathable” places. The child may have cramped hands (piano fingers) or blow on his fingertips. He or she may fear contracting a fatal disease, especially blood-related such as AIDS. Overwhelming significance may be inexplicably given to nondescript objects or events. Door handles, faucets, utensils, and chairs may suddenly become untouchable items. Your child may become preoccupied with hygiene, washing his or her hands until they are raw. He or she may refuse to leave the house because they might get sick from the germs outside. They may have to walk in patterns or do things until they “feel right”; or jump lines endlessly to make certain they didn’t miss any of them. Your child may stand in one place and spin or may want you to participate in what seem to be senseless rituals – saying things a certain way, or doing things a certain way. If you go wrong, you have to do it again. He or she may start hair pulling: eyelashes, eyebrows, or hair (trichotillomania) or may scratch and pick at skin (dermotillomania).

Treatment

One of the downsides in treating PANDAS is that there is no consensus about the best way to treat it. There is, however, agreement on the four goals of a comprehensive treatment plan: (1) Manage the infection (2) Reduce inflammation and build up the immune system (3) Address the psychiatric symptoms (4) Help the child develop the skills needed to manage his behaviours during recovery.

 

  • Mange the infection - Antibiotics, tonsillectomies and blood procedures are three ways physicians target the infection.  Antibiotics for any serious bacterial infection will be the first line of treatment, and will be the simplest method of treating the infection causing PANDAS. This is not an ordinary strep infection that will respond well enough to the usual 10-day course of penicillin, amoxicillin or augmentin; rather treatment has to be aggressive. If the child is allergic to penicillin, then another antibiotic will be prescribed. Tanya Murphy says: “My first choice is augmentin when the presentation is tics. For acute, severe OCD presentations, I prescribe azithromycin, and I’ve found mycolplasma in many of those cases. I start with the standard dose.” Medication is weaned usually after a couple of months; however, some children must stay on antibiotics for years. Catherine Nicolaides, MD says: “I believe that for the purposes of this disorder, the antibiotic should be titrated (gradually increased) and withdrawn similarly to psychotropic medication.” 


  • Reduce the inflammation - Antibodies are known to cross the blood brain barrier (BBB) which causes inflammation. Medically, there are two possible approaches here, which are ibuprofen or steroids. As an anti-inflammatory, and while no means a cure, some parents have found that ibuprofen helps “take the edge off”. However, the theory behind the anti-inflammatory effect of the steroid (e.g. Prednisone or Cortisone) is that by helping to seal the BBB fewer antibodies are unable to reach the brain, resulting in less behaviours. Remember this is a short-term solution. Robert Sears, MD, FAAP (Dr Bob) says: “Steroids can only be prescribed short term. For a longterm natural anti-inflammatory, I recommend a high dose of fish oil–2000 mg to 3000 mg per day-of Omega 3 fats. Another natural anti-inflammatory is the Indian spice Turmeric. The active ingredient in Turmeric is Curcumin. For this I recommend a supplement called Enhansa to my patients.”


  • Tonsillectomy – Some parents believe the tonsillectomy is what caused their child to finally get better; although other parents report moderate improvement to none at all, and sometimes an exacerbation following the procedure. To date, there has not been any research that specifically studies tonsillectomies and PANDAS patients. Also, since other areas of the body can be affected by various types of infection, hence PANS, it’s not always the case that the virus belongs to an ordinary strep infection.


  • Blood procedures - With regards to blood procedures, Tanya Murphy MD urges caution about “Intravenous Immunoglobulin (IV Ig)”. She says: “Children relapse with only one treatment. I’ve observed that some children do better after three treatments, but they have no means remitted. My feeling is that IV Ig is not appropriate unless the children can be defined as immune deficient or there is otherwise biological evidence that warrants the treatment. I am more open to it, however, for children who do not respond to antibiotics.” The other blood procedure, Plasmapheresis, is a process whereby blood is removed from the body and essentially cleansed of antibodies before being returned to the body. This procedure is used to treat immune disorders such as lupus and is usually only used on PANDAS patients following a failure to respond to IV ig.


  • Addressing the psychiatric symptoms – Psychotropic medicine is prescribed to help change the chemistry of the brain so that behaviours are modified while the infection is addressed. The prescription always starts at a low dose and then gradually increases to the maximum recommended dose – until the desired behavioural effect is achieved. With regards to psychotropic medicine and antibiotics, Daniel Geller, MD says: “I will prescribe traditional psychotropic medication to address the psychiatric symptoms as needed, but generally not concurrently with antibiotics. I want to allow the antibiotics a chance to work before committing a child to a course of psychotropic medication.”


  • Help with Behavioural Skills – Children with PANDAS continue to live with the behaviours described earlier even after taking medication. As such, they require help to develop the skills that will conquer these behaviours. This is done trough cognitive behavioural therapy (CBT). It’s important however that the child is well enough to participate in the therapy; otherwise, it will not be effective. The extent of the therapy will usually depend upon how long the child has had PANDAS and how ingrained the behaviours have become. Some children who demonstrate that they are motivated and determined will likely work well with a psychologist once a week; whereas other children who are dominated by their behaviours may need to enter a residential programme.

This article is adapted from pieces of information taken from “Childhood Interrupted” by Beth Alison Malone, also the author of “Saving Sammy”. Beth Malone is the mother of three sons, and her story “Saving Sammy” describes the highs and lows of helping Sammy survive PANDAS. “Childhood Interrupted” focuses on the answers and treatment options for this often debilitating neuropsychiatric disorder. These are both excellent books that I highly recommend reading.  http://www.amazon.co.uk/Childhood-Interrupted-Complete-Guide-PANDAS/dp/1492974862


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