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Managing epilepsy during COVID-19

Epilepsy is the most common serious neurological disease affecting over 50 million people worldwide and an estimated 5 million plus people in India.

People with epilepsy have recurrent, unprovoked seizures and these have to be differentiated from provoked seizures that follow a tumour, stroke, infection, inflammation, metabolic disease (like very low or very high blood sugar) and so on. A seizure is an electrical storm in the brain; a short circuit in the brain’s normal electrochemical activity.

World Epilepsy Day or Purple Day just passed us on 26th March. In this time of COVID let’s ask ourselves what the implications are for people with epilepsy. Here are some common FAQs.

Can COVID-19 cause epilepsy?

According to the International League Against Epilepsy, there is no direct evidence that the coronavirus infection can directly cause epilepsy. However, like all infections that can cause high fever, breathing difficulties and other problems with normal functioning, being infected can result in a person who is susceptible to epilepsy, suffer breakthrough episodes.

Does epilepsy or its treatment make one more susceptible to COVID-19?

At present there is no information to suggest that either epilepsy or epilepsy treatment (anti-epileptic drugs, most commonly) will in any way make a person susceptible to COVID-19. Indeed, there is no suggestion that people with epilepsy have any special immune vulnerability either. However, the stress a pandemic of this nature can induce in people, the sleep deprivation and attendant lifestyle changes, can all make a person already vulnerable to seizures, express them more frequently.

What should I do if I have a seizure in this time of COVID-19?

If one has never had a seizure before in their lives, it is obviously imperative that they consult a neurologist, urgently and undergo relevant investigations as advised. As most routine clinics are cancelled, the emergency room of a hospital may be a better point of access at this time. However, for people with pre-existent epilepsy, a single seizure is no reason for panic. Call your usual doctor and discuss what you can do to manage your epilepsy better; follow your doctors advice.

Avoid visiting clinics and hospitals for single breakthrough seizures unless you feel it is absolutely necessary. However, if seizures cluster together, or indeed a person suffers continuous seizures with no recovery of consciousness in-between, what is called “status epilepticus”, it must be treated as an emergency.

What precautions should a person with epilepsy take at this time?

People with epilepsy are advised to stock up adequately on their anti-epileptic drugs, as even missing a single dose can cause a breakthrough seizure for some. Compliance with drug treatment is extremely important for people with epilepsy. Stress is inevitable and managing it with meditation, yoga, a healthy diet and lifestyle are all possible. Many good online tutorials exist on all the above. If one is very stressed out an online consultation with a psychiatrist or psychologist can be helpful. Sleep deprivation is another risk factor for people with epilepsy; adequate rest and sleep are therefore very important. Sleep can be disturbed due to stress or indeed due to excessive exposure to digital media — televisions, computers, tablets and smartphones.

Good sleep hygiene: making oneself clean and comfortable before going to bed, making the temperature and lighting in the room ambient and suitable to the extent possible, putting way all digital media and retiring to bed with either a book or gentle instrumental music (if one must have a distraction) are all encouraged.

Are there special precautions?

Unless one is a healthcare worker or otherwise at high risk of exposure, no special precautions are recommended. If a person with epilepsy belongs to this category, they are encouraged to speak with their usual doctor about drug prophylaxis and other precautions. For all other people with epilepsy, the principles of social distancing, avoiding unnecessary contact with people outside one’s immediate family, or indeed taking due care around anyone who is symptomatic of COVID, is adequate.

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Attention Deficit and Hyperactivity Disorder (ADHD) Autistic Spectrum Disorder (ASD) Buddhi Stories Children Featured Patient Stories

From Tasmanian Devil to Mathematical Whiz

From Tasmanian Devil to Mathematical Whiz
From Tasmanian Devil to Mathematical Whiz

Master S first met the Neurokrish team (later to become the Trimed-Neurokrish team) about 6 years ago. Aged three years at the time, he was brought to us by his grandfather who had recovered fully from a stroke, under our care. S demonstrated clearly to us the features of both Autistic Spectrum Disorder (ASD) and Attention Deficit and Hyperactivity Disorder (ADHD). He refused to maintain eye-contact, engaged in fleeting social contact which was very poorly sustained and was yet to develop any language skills of note. More disturbingly, S was profoundly hyperactive and disruptive, so much so, that he could in a few moments literally tear apart a consulting or therapy room, when left alone. Needless to say, his mother was distraught, and his extended family members were dismayed. In our minds, S bore a striking resemblance to “Taz” the adorable but disruptive “Tasmanian Devil”, then a beloved cartoon character, much loved by the kids.

Taz was offered a combination of behaviour therapy, Neurodevelopmental therapy and family counselling. He was also prescribed medication to improve attention, stabilise his volatile moods and cut down his very disruptive behaviours. Over a 3 year period, our therapeutic relationship with Taz’s family evolved; together we walked many a milestone; his first words, his play school, kindergarden, and primary school. Therapeutic holidays from drugs during summer and winter vacations; the role of extended families, maternal and paternal; expectations of the many stakeholders, parents, both sets of grandparents, uncles and aunts; teacher and school interactions; our therapeutic relationship weathered these many storms. His GI problems responded to our Naturotherapy approaches; his limbs became dexterous and his fine motor skills including handwriting skills improved with Neurodevelopmental therapy and Ayurvedic massages. Thanks to sustained behaviour

therapy and parental counselling he became less disruptive, could follow parental instructions and began to sit for longer periods of time. His attendance and participation at school improved dramatically; his intuitive mathematical abilities started to shine; he learned to interact better with peers and teachers. Indeed, not only did he survive primary school, he had even topped his class in mathematics. Clearly Taz was endowed with “mathematical intelligence” that outstripped other “emotional and social” domains (see A Vital & Alternative Perspective To Enabling Potential).

Taz, with a combination of ADHD and ASD, was one of our most challenging child clients ever! Recently we met our “Taz” one final time, before he migrated with his family abroad. His evolved parents had declared his condition in the immigration visa application form and sought special assistance for him aided by a detailed summary from Trimed-Neurokrish.

Taz is still a little disruptive and impulsive, butts into conversations, slightly stilted in his speech, but we know he has come a long way. Our Trimed-Neurokrish Integrated approach judiciously combined medication and behavioural and neurodevelopmental therapy, with Naturopathy and Ayurveda, empowered the family with counselling, and awakened his “mathematical intelligence”, with progressive increase in his self-esteem. With this, his social interactions exude warmth and willingness to communicate. His onward life’s journey while abroad must follow the same trajectory.

We must admit that S’s remarkable progress was made possible by the wonderful therapeutic relationship our team had with his family. From S and his family we have learnt the importance of looking beyond terminology and the diagnostic label. Sustained therapy with vigilant monitoring and family and special school support, carry their own reward and hold hope for children, affected just like S. Prof. Dr. Ennapadam S. Krishnamoorthy

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Autistic Spectrum Disorder (ASD) Buddhi Stories Children Epilepsy & Seizures Featured Patient Stories

Bharath – Emerging From The Shell

Bharath – Emerging From The Shell
Bharath – Emerging From The Shell

Biography

By 9 months of age the infant showed regression in eye-contact and response to call. By the time the child was 1 year old, the father left home, never to return, but provided financial support from afar. Was he shirking his paternal role towards his child with developmental disability? But the well-educated mother took matters in hand, moved in with her parents for logistical and emotional support for the whole family, and devoted her time to Bharath, to quell his hyperactivity at two years and to push his delayed language acquisition to the next level. Paediatric consultations for guidance, regular speech therapy and early Montessori schooling saw Bharath settle comfortably in a mainstream school, with

age-appropriate range of receptive and expressive language, with reading and writing in place by 6 years of age. He continued to be a slow learner.

Was he shirking his paternal role towards his child with developmental disability?

However, the challenge for the family has been the inevitable behaviour problem of ASD – (differently wired!) which is often traced to poor sensory integration, resultant poor holistic perception, hyperactive emotional network with weak frontal lobe inhibitory commands to suppress the eruptions of uncontrolled energy. Bharath’s unprovoked emotional outbursts, with violence directed mainly against his mother (or in destroying objects), is partly an expression of internal hurt, as he is not amnestic of the event, and shows remorse for the behaviour in recent times. He insists on his mother’s undivided attention and spares her little time to devote to his elder sister. These outbursts are fewer over the past 1.6 years since he joined Vidya Sagar, as he receives multimodal therapy, is on regular anticonvulsant, antipsychotic medication and SSRI, and his energies have been channelled, with the focus on academics. He has cleared the Open School Board Examinations in Home Science, English and Computer Data entry, without scribe assistance, and is preparing for the Business Studies examination in October 2017. He will complete all five subjects required for the Board’s 10th Std. Secondary School Certificate in April 2018, when he does the bakery/painting examination – truly a most commendable effort!

With his self-esteem and self-confidence rising, we find Bharath come out of his shell and mingle socially with his peer group at school and with relatives and friends who visit their home. He is Secretary of the local Interact Club, has joined NCC as a cadet and follows cricket and movies on TV with keen interest. He tends to talk excessively, lacks discrimination and even reveals close family concerns to outsiders. The client had seizure disorder which is moderately controlled on medication. Currently he is on the following medication: Syrup Sodium Valproate Extended Release, Zolpidem (Non Benzodiazepine hypnotic), Aripiprazole (Aripiprazole is an antipsychotic preparation and helps control irritable behavior such as aggression, temper tantrums, and frequent mood changes in ASD).

Assessment Reports

The Clinical Specialists Observations –

An intact systemic examination. Neuropsychiatric Inventory reveals intact Higher Mental Function (HMF), reactive affect, normal intelligence and no focal deficit.

EEG Report :

Awake and resting EEG conducted on a standard 10-20 system. Background activity is alpha at 9-10 Hz, with bilateral, generalized paroxysmal sharp wave activity. The EEG is suggestive of seizure disorder.

DST:

Age of 12 years was attained, based on parameters of functioning.

ISAA SCORE:

71- indicating mild autism

CBCL:

Mainly overeating and talking excessively and indiscriminately.

VSMS:

Obtained a social age of 8 years and 9 months, with a social quotient of 58, indicating mild deficits in social adaptive functioning.

ICF Neurodevelopmental Disability Assessment

No structural deficits observed and no limitation of function, minimal activity limitation. Mother and Institution proved to be facilitators.

Response To Therapy

As he developed chicken pox, a break in therapy had to be instituted. Improvement in sleep and behavioural problems were reported at the end of the sessions.

Reviewed One Month After The End Of Therapy

His aggressiveness which was already on the mend, was helped by the therapy to calm him down further. He was advised to continue the medication regimen as before.

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Autistic Spectrum Disorder (ASD) Buddhi Stories Children Epilepsy & Seizures Featured Obsessive Compulsive Disorder Patient Stories

Shanthi – The Time Keeper

Shanthi – The Time Keeper
Shanthi – The Time Keeper

Biography

The antenatal period was moderately smooth. Shanthi was born at full term by natural delivery with a birth weight of 3.45 kgs. The birth cry was delayed, with hypoxia and neonatal seizures, and the neonate required oxygen and ventilatory support for a week. By 21 days of birth, she was re-admitted with high fever and respiratory distress with a diagnosis of pneumonia. Bouts of diarrhoea continued till the third year. There was delay in cognitive, language and motor developmental milestones and she uttered the first meaningful word and walked unsupported only at the age of 4. To add to this, she showed autistic-like symptoms of bizarre behaviours and auditory hypersensitivity. Covering both ears, which she repeats often – even while watching a movie on TV – is in all probability a learned behavior linked to anxiety. Children with ASD are known to become fearful of potential unpleasant noises.

Shanthi’s anxiety repertoire extends to strong separation anxiety of a pathological nature, and that may account for her daily ritualistic morning tantrum when she has to attend school. She watches the clock every moment and believes in an obsessive-compulsive manner that her life and the life of her family members revolve around the ticking of the clock. OCD traits are not uncommon in adolescent females with ASD. She awaits her father and elder brother’s return from the day’s work at the expected hour. With even a 10 minute delay, she paces the floor and shortly after, all hell breaks loose! Curiously, she throws a lesser tantrum even if they return from work early, as this disturbs her need for ‘sameness’ and routine.

Shanthi is selectively aggressive and violent at home, beating her mother, the primary caregiver, even without provocation, pinching the elder brother if he switches on the TV without her permission, and breaking objects. While at home, she opposes the figure of authority with screams, when she does not wish to satisfy a demand, bordering on oppositional defiant behaviour but shows remorse when the mother cries.

Attention-seeking, access to preferred items/activities and elimination of demands may be the likely reasons for her to maintain this aberrant behaviour cluster. She has poor self-care skills and is partially dependent on the mother for ADL, especially in areas of personal hygiene.

At school she is a near gem, except for occasionally kicking a classmate for ‘not falling in line’. Then there is the familiar, prolonged holler between class sessions in which she indulges. Her expressive language is poor, but she receives, comprehends and has good retentive power. Immersed in academics, while at school, she has completed two subjects (Science and English) of the Open School Examination with scribe assistance.

With even a 10 minute delay, she paces the floor and shortly after, all hell breaks loose!

Buddhi Notes : Prodigiously Particular

There is little disposition to generalise from these particulars or to integrate them with each other, causally or historically, or with the self. In such a memory there tends to be an immovable connection of scene and time, of content and context (a so-called concrete-situational or episodic memory)-hence the astounding powers of literal recall so common in autistic savants, along with difficulty extracting the salient features from these particular memories, in order to build a general sense and memory. It is characteristic of the savant memory (in whatever spher-visual, musical, lexical) that it is prodigiously retentive of particulars.

Oliver Sacks, Neurologist & Writer on the Savant Brain

Assessment Reports

The Clinical Specialists Observations –

Intact systemic examination. Flaccid tone of all muscles, muscle power 4+, diminished deep tendon reflexes and plantars bilaterally flexor.

EEG Report :

The sleep EEG shows bilaterally symmetrical tall sharp waves in stage 2 sleep. This is an abnormal record.

DST:

Age of 7 years was attained based on parameters of functioning

ISAA SCORE:

73 – indicating mild autism

CBCL:

Externalizing syndrome – aggressive behaviours with co-morbid. Internalizing syndrome – withdrawn/depressed and anxious.

VSMS:

Social age of 8 years and 9 months, and a social quotient of 19, indicating profound deficit in social adaptive functioning.

ICF Neurodevelopmental Disability Assessment

Issues present in mental, neuromuscular and movement areas. No major structural deficits. Significant issues present in the subdomains of learning, applying knowledge, communication, general tasks and demands.

Response To Therapy

Shanthi co-operated for the therapy. Though there was no significant benefit, her mother was pleased with the procedure and requested a longer period of therapy.

Prof. Dr. ESK and the Vidya Sagar team felt that the physical disability status required review, and the Trimed-Neurokrish senior physiotherapist was called in to assess the client. The report reads as follows:

“Normal muscle tone, muscle power 4+, with low endurance. Flat feet with externally rotated lower limb while walking. Atypical gait. Decreased fine motor skills but good gross motor activity.”

The unacceptable behaviours may be explained by the biopsychosocial model of multifactorial risk factors. Structured behavioural modification sessions along with parental skill training may benefit Shanthi and reduce parental stress.

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Autistic Spectrum Disorder (ASD) Buddhi Stories Children Featured Patient Stories

David – Comfort in Monotony

David – Comfort In Monotony
David – Comfort In Monotony

Biography

At full term, uterine dystocia and prolonged labour were the indications for birth by caesarean section. The post-natal period was uneventful, except for mild physiological jaundice. It was around the end of the second year, that the parents’ mounting concern about their son not uttering even one meaningful word, took them to the specialist.

David did not respond when called by his name. However, even as a 2 year old, he would run to the TV to hear the familiar TV jingles, which he still seems to relate to every time with the same joy and zest. David was preoccupied with himself, muttered and showed poor eye contact. He was hyperactive and indulged in lone play. BERA (to rule out hearing deficit) and brain MRI (to look for any structural lesions) were done and reported normal. A diagnosis of ASD was arrived at by the specialists.

Special schooling was initiated right away, with emphasis on speech therapy and occupational therapy, and soon he could write numbers and solve basic-level jigsaw puzzles. He has been with Vidya Sagar for the past 2 years. Initially he kept moving around the classroom, with strong intolerance to sitting in one place. He showed no inclination towards academics, except scribbling on paper and favouring the letter ‘H’ and the digit ‘7’ in the letter/number picking exercise. With lack of meaningful words and phrases, David’s self-learning is mainly visual and through observation. He repeatedly grabs a Fevistick with its attractive yellow label or a crayon – preferably green in colour, objects to which he has an ‘inappropriate attachment’ (as tenned in ASD clinical jargon). ‘Sameness’ seems to be his comfort zone. When asked to return the object – being of easy and flexible temperament -he returns it without a whimper, only to grab it the next moment. Occasionally he has to resort to tantrums to get his way, when caregivers seem unreasonable!

With physical exertion in the dance class, his restlessness has been brought under a semblance of control and with this his attention span has shown improvement. Attention is the first step towards learning and the child shows some progress in activity-based learning, as he sits through longer sessions with undivided attention. His restlessness continues to manifest as hand flicking and whistling intermittently.

Assessment Reports

The Clinical Specialists Observations –

A general clinical examination showed an intact systemic examination. The Neuropsychiatric Inventory revealed increased motor activity in the classroom, unintelligible sounds by way of speech, grossly intact higher mental functions and no focal deficits.

EEG Report :

Bilateral Epileptiform Dysfunction

DST:

DST age of 3 years attained

ISAA SCORE:

94 – indicating mild autism

CBCL:

Internalising Syndrome Criteria for withdrawn/depressed, social problem and attention deficit.

VSMS:

Social age of 5 years, 4 months and 8 days obtained with a social quotient of 70, indicating borderline deficits in social adaptive functioning.

ICF Neurodevelopmental Disability Assessment shows minor problems in mental function, and no structural deficit. Under activity and limitation, significant problems in subdomains of learning and application of the gained knowledge, general tasks and demands, self-care, major life areas and community, social and civic life. Considering environmental factors, both parents and institution prove to be facilitators.

Buddhi Notes : A Curious Attachment

One of the most outstonding symptoms of the autism spectrum is a curious attachment to objects. Perhaps part of a tendency to over-invest in certain activities, at the expense of other “more normal” pursuits, such attachment can traverse the gamut of inanimate objects. On occasion, such attachment can be to a particular activity or even a particular person. I recall an interesting article by a doctor in the Journal of the American Medical Association titled “Phantom of the Opera” in which she described her son’s attachment to a particular piece of music and need to hear the same, over and over again. Curiously, attachment to certain objects (such as a teddy bear, even one that is moth eaten or mangled) is a transcultural childhood trait. Remember Mr. Bean and his companion bear, anyone?

Prof. Dr. Ennapadam S. Krishnamoorthy

Response To Therapy

David co-operated overall for the therapy except for some restlessness in the second session. At the end of therapy, the overall improvement was significant. His mother wished to continue therapy.

Reviewed one month after the end of therapy, his motor movement and co-ordination were better, and his repetitive movements reduced. His attention span has improved and he responds better to classroom activity. David has anger outbursts when pushed by his brother, which was considered a natural response to the provoking stimulus and was viewed as a positive sign, both by the Trimed-Neurokrish team and the senior faculty of the institution.

Prof. Dr. ESK suggested introducing AED medication with the consent of the parents.

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Attention Deficit and Hyperactivity Disorder (ADHD) Buddhi Stories Children Dystonia Featured Neurodevelopmental Disability (NDD) Patient Stories

Deepak – Precious Child

Deepak – Precious Child
Deepak – Precious Child

Biography

Everything seemed against the birth, growth and development of Deepak, as if nature and nurture were conspiring against his very survival at every stage. However, he got past the onslaught of the catastrophic events around his birth, was diagnosed with Neurodevelopmental Disability (NDD) in his infancy, and associated conditions, namely ADHD in his childhood and Seizure Disorder in the adolescent phase. As a young adult he developed Dystonia (involuntary muscle spasm).

Deepak’s mother was an elderly primi at 32 years of age and conceiving for the first time 7 years after marriage and he was ‘a precious baby’. She was hypothyroid, on thyroid supplements, and was on psychiatric medication for 4 years prior to the delivery. The child was delivered by elective Caesarian section, and the mother suffered Post-Partum Haemorrhage (PPH) while the newborn had an Apgar score of 9, with some breathing difficulty.

Exploring the Condition

It was a non-consanguineous marriage. The father had a chronic health condition and his career never took off. It was thus a dysfunctional family, with an overanxious mother coping with a hyperkinetic child with NDD, the father shirking the responsibilities of fatherhood. Deepak’s father died when he was barely 6 years of age and the mother moved in with her parents with the child. There was a history of dementia on Deepak’s maternal side but no family history of suggestive of neurological, psychiatric or other general medical (including liver) condition to indicate Wilson’s disease (see box).

Motor milestones were delayed, and the child walked at 2 years. Unthinking TV viewing by the family saw Deepak at the same age jumping and clapping hands at every violent scene on the screen as if to cheer the hero and villain along! Language was delayed and he started saying a few meaningful words around 2½ years.  At school at age 4 years, he had poor attention span, would not sit in one place, and his learning ability was average. He did not mingle with his peer group in school, and this awkwardness in social interaction continued, into adolescence and adulthood. It is around 5-6 years that Deepak started showing significant aggression, especially aimed at his mother.

He had fears and phobias, and was reluctant to board the public bus to school with his mother, resulting in frequent tantrums. The mother sought a psychiatric consultation for Deepak and he was prescribed a mild tranquiliser. He managed to get through mainstream school (with only one change of school in the 5th grade). While in middle school, he was seen by a Neurologist and diagnosed to have ADHD  and was prescribed Dicorate ER (Divalproex) 250 mg – 1-0-1 and Modafinil (a stimulant drug) 100 mg – 1-0-0. In the 9th grade, he had difficulty coping with studies but managed to pass the 10th grade Board examination.

Before completing 12th grade examination, in 2009, Deepak had seizures manifesting as momentary loss of consciousness and stare. He had memory deficit following the seizure onset and could not cope with his studies.  He dropped out of school as a consequence and subsequently developed frequent minor involuntary movements of the limbs, later dystonic turning of head/neck to the right, with facial grimacing.  Lifting the arm spontaneously, without voluntary control, also followed. At this stage a Neurology Consultant  put him on Tab.Trihexiphenidyl 2mg – 1-0-1.

Our Healing Approach

After comprehensive assessment at TriMed-Neurokrish, at the age of 22 years, a diagnosis was arrived at of Neurodevelopmental Disability with Neurobehavioural Syndrome, borderline intelligence and Movement Disorder (MD). The management of the patient was planned carefully taking into account the multiple challenges that had to be dealt with effectively. The patient was on polypharmacy, and the first step was modification of the drug regimen to optimize benefit. He was on Tab.Divalproex ER 250 mg – 1-0-1 and Lamotrigine 50mg – 0-0-1 was added to this regimen, as effective mood stabilizing combinations in such conditions. Along with this, a novel antipsychotic, Clozapine 25 mg – 0-0-1½ was prescribed; later Atomoxetine 25 mg – 1 -0-0 was started to control ADHD features; to improve attention and concentration and to reduce hyperkinetic behaviour. Modifinil was eventually tapered and stopped as was Dicorate.

The patient did well on this new drug regimen with no further seizures and reduction in the frequency of involuntary motor disturbances. Multivitamin, Calcium Piracetam were added on at various stages of treatment. Deepak had severe musculo-skeletal pain all over the body with spasm of the limb muscles, and the trapezius muuscles in particular, bilaterally. Tab.Trigabantin (Gabapentin 300mg + Methylcobalamin 0.5 mg), Alpha Lipoic Acid 100 mg was added to the drug regimen, and with physiotherapy aimed at relaxing the muscle groups involved there was relief of spasms and with it, pain relief. He also received Podikizhi, an Ayurvedic massage therapy technique with dry herbal powder which is efficacious in the treatment of complaints associated with joints, musculoskeletal and neuromuscular pains in addition to rejuvenating, relaxing and strengthening the joints, muscles and soft tissues and as a result providing remarkable pain relief.

The integrated therapies of Neurorehabilitation and Cognitive Retraining sessions, combined Yogasana, Pranayama, Meditation 22 sessions, Acupuncture 10 sessions, Reflexology 20 sessions, ran parallel to the physiotherapy exercises and TENS 22 sessions. Following a few sessions of therapy, there was improvement in gait, involuntary movements were significantly reduced and ADL performance was returning to normal. The beneficial response to cognitive retraining was noteworthy, as his power of concentration and with it his retentive power and memory had stepped up remarkably with goal-directed cognitive activity. Behavioural problems were brought under control.

The NDD at birth with neurobehavioural problems, exaggerated neuropsychiatric symptoms with onset of the movement disorders/dystonia, the raised Aminotransferase, on LFT testing (indicative of disturbed liver function), the chronic constipation, and a high serum copper (196.4 micrograms/dL), suggested to the Neurokrish Consultant a drug challenge with Penicillamine (a chelating agent), even though the clinical and lab findings were atypical for Wilson’s disease. There was no KF ring, and serum caeruloplasmin and 24 hour urinary copper were normal. Penicillamine (250mg) was slowly increased from one to 2 tablets and was successful over weeks in     reducing dystonia considerably. Subsequently serum copper levels improved and LFT became normal. At the end of 6 months, the Penicillamine was tapered over a month and then stopped, with no return of the dystonia at monthly follow up, even at the end of 7 months.

Wilson’s Disease

Wilson’s disease is an autosomal recessive disorder of copper metabolism, characterised by excessive accumulation of copper in the brain, liver, kidney, cornea and other organs. The clinical manifestation of WD is due to the toxic accumulation of copper in these organs.

Copper is an essential metal that is an important cofactor for many proteins. The average diet contains adequate amounts of copper. The absorbed copper from the duodenum and small intestines enters the portal circulation and reaches the liver.  The liver utilizes some copper for its metabolic needs, synthesizes and secretes the copper-containing protein Ceruloplasmin, and excretes the excess copper via bile secretion. Defective excretion of copper (Roberts 2008)1, results in its deposition especially in the liver and brain.

Ceruloplasmin is the major carrier for copper in the blood, accounting for 90% of the circulating copper in normal individuals. In one series (Steindl 1997)2, 12 of 55 patients with WD and mainly liver involvement, had normal ceruloplasmin and no Kayser-Fleischer rings, though subjects in the same study with predominantly  neurological manifestation had  lowered serum caeruloplasmin and the presence of KF ring.

The gene for Wilson’s Disease ATP 7B, has been mapped to chromosome 13. There are multiple disease mutations of the gene described in proband with the disorder. Further, there are significant Indian studies (Mukherjee, 2014)3 on the genetics of WD, highlighting that some of the more frequently occurring mutations in Indians are different from those reported by  the West.

First-degree relatives of any patient newly diagnosed with WD must be screened. Serum aminotransferase activities are generally abnormal in WD except at a very early age. In many individuals, the degree of elevation of aminotransferase activity may be mild and does not reflect the severity of the liver disease. D-penicillamine (demethylcysteine) is an effective chelator of copper, well absorbed when taken orally , and it promotes the  urinary excretion of copper.

D-penicillamine – induced status dystonicus (Paliwal, 2010)4 is a unique but serious drug related complication in a subset of patients with Wilson disease  with good response to Gabapentin, but failing to respond to other antidystonia drugs.

References

  • Roberts E.A., Schilsky M.L. Diagnosis and Treatment of Wilson’s Disease: An Update (AASLD Guidelines) Hepatology, June (2008),47,(6)  : 2089-2111
  • Steindl P., Ferenci P., Dienes H.P., Grimm G., Pabinger I., Madl C., et al. Wilson’s disease in patients presenting with liver disease: a diagnostic challenge. Gastroenterology 1997;113:
  • Mukherjee S., Dutta S., Majumdar S., Biswas T. et al Genetic defects in Indian Wilson disease patients and genotype- phenotype correlation. Parkinsonism Relat Disord. 2014 Jan;20(1):75-81.
  • Paliwal V.K., Gupta P.K., Pradhan S. Gabapentin as a rescue drug in D-penicillamine-induced status dystonicus in patients with Wilson disease. Neurol India 2010;58:761-3.

Looking Ahead

Deepak has progressed well all round, much to the delight of the TriMed-Neurokrish team. The mother is thankful and has no words to express it. Deepak continues his follow up at Trimed-Neurokrish, is regular with his medication, and is advised short course of therapies if indicated. He continues his exercise regimen at home. He went through a short three-month computer course and is now employed for a computer data entry job, which he carries out efficiently, with all the concentration required. The  occasional flicker of involuntary movement is almost negligible. Behaviour problems have receded to the background, and he is less awkward socially though he continues to be introverted. Above all, there is an inner calm and peace that Deepak radiates, which tells the long story of pain and hardship of the past, and of the future which he knows will offer better hope and cheer. Life is good!

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Buddhi Stories Children Featured Patient Stories Tourette’s Syndrome

Ramdas – The Changeling

Ramdas – The Changeling
Ramdas – The Changeling

Biography

Ramdas had multiple tics of the shoulders and lower limbs and occasional vocal tics simulating clearing of the throat or a grunt. The more he tried to suppress them, the more stressed he became and almost like a rebound phenomenon, the build up of the tension would subsequently produce tics and grunts which were explosive in character. He walked the 1 km to school as before. He also ate and slept moderately well. How did these abnormal movements, over which he had no control, come about? He became irritable, lost his temper and exhibited a tendency towards defiance aimed particularly at parental control. He became socially withdrawn and stopped participating in extramural activities. He always had difficulty focusing in class, but now he was unable to pay attention even over short periods. Progressively, the knowledge gap in his studies widened and he lagged behind the class abysmally! Examinations became a nightmare! The tic disorder was unrelentingly eroding his self confidence and self esteem.

Ramdas’s parents, though in the middle range of middle class, with the mother a homemaker, decided in the early days that their only child must have the best education. From the 3rd grade, Ramdas was studying in one of the premier schools of the metropolis and would come rushing  home, with bated breath, to share the day’s events with his mother over the hot tea and snack which she lovingly laid out for him. What went wrong? Had she slipped up somewhere along the way in her nurture of the child? Had she not propitiated the gods to thank them for the birth of this lovely child, who had grown even more charming and closer to her as the years rolled by?

The father was more down to earth and practical in his approach. The Neurology Consultant had told him that the patient had a chronic movement disorder with motor and vocal tics and attention deficit as a comorbid condition could affect his studies. The parents approached TriMed-Neurokrish when the school authorities directed them  to avail of the holistic approach to treatment offered there. 

Exploring the Condition

The goal set for the TriMed-Neurokrish team was in improving mood, self-esteem, academic performance and social functioning through oral medication, a range of integrated therapies and family counseling. Ramdas was started on  Attentrol 10 mg – 1-0-0 (Amoxyteline Hcl) for ADHD and Sulpitac 50 mg – 0-0-1/2 (Amisulpride) – a neuroleptic, towards some control of vocal and motor tics and associated behaviors. Behaviour therapy was introduced with psychoeducation of the patient regarding the condition, (with parents participating in the dialogue with the team members). The first step was to build a foundation of self-esteem to help the child gain confidence to face his problems, and begin implementing skills. Our intensive therapy for Ramdas followed our protocol for children with Neurodevelopmental Disorders (NDD) and included a combination of two Ayurveda treatments (Shirodhara & Abhyangam), Play Yoga, Neurodevelopmental Therapy (NDT, a combination of physical and occupational therapies) and psychological therapy (behavioral and family). Sessions of NDT and BT often continue for months in regular periodicity, and include weekend opportunities to meet with peers (also in therapy), socialize, and develop skills of emotional expression.

Tourette’s Syndrome

A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization. Multiple motor tics involve several muscle groups, while a simple tic involves only one muscle group.

Gilles de la Tourette’s Syndrome or Tourette’s Syndrome is a neurodevelopmental condition characterised by multiple motor and vocal tics, which appear in childhood and are often accompanied by behavioural symptoms. For a diagnosis of Tourette’s syndrome

(DSM-V) the main criterion is that both multiple motor and 1 or more vocal tics have been present at some time during the illness, though not necessarily concurrently. It must stretch over a whole year, with tic-free period lasting less than three months at a stretch. The onset of the tics must be before the age of 18 years, and not due to other causes like substance abuse or secondary to other neurological  conditions. A more recent behavioural intervention, (John Piacentini, 2010) which has been found effective in TS is Comprehensive Behavioral Intervention for Tics (CBIT),  based on habit reversal training, for reducing tics and tic-related impairment in Tourette disorder. In CBIT, children with tics are trained to recognize the urge to tic, and to use a replacement or competing response instead of the tic.

References

  • DSM-V – Diagnostic criteria for Tourette Disorder
  • Andrea E. Cavana Tourette Syndrome – Clinical Review , BMJ, Aug 2013 ; 347 :1-6
  • John Piacentini, Woods; D W.,  Scahil, L  Behaviour Therapy for Children With Tourette Disorder-A Randomized Controlled Trial  JAMA, May 19, 2010, Vol 303, No. 19

Looking Ahead

Ramdas has done well with us, and a follow up after 3 months saw an exceptionally changed young lad, with his head held high and much of his self-esteem regained. The tics had waned and subsequently stopped for over months. His behaviour had become closer to his original level of calmness with the therapies and yoga. He was no longer defiant. He pleaded with his parents to let him continue in his mainstream school and the school was willing to retain him, provided there was an extra effort to make up in his studies.

Ramdas’s parents who considered shifting him from a mainstream school to a school offering special education and Open School examination system reconsidered the decision and waited for the team specialist’s opinion before finalizing their decision. At TriMed-Neurokrish it was decided that with Ramdas who was showing marked improvement all round, with the stress, tics, and behavioural problems being put aside, with the attention deficit being minimized and with the motivation being high, could be given a fair trial  of  continuing for one term in his mainstream school, with a special educator to handle the areas of LD after school hours. Ramdas was elated and the parents were willing to follow the advice.

Regular follow up once a month or more often to reinforce the therapies, (which he continued at home under the supervision of his mother) ensures that he continues to show remarkable progress.

Categories
Adolescents Buddhi Stories Children Epilepsy & Seizures Featured Patient Stories

Asma – Building Rapport

Asma – Building Rapport
Asma – Building Rapport

Biography

Asma was the second born of two daughters to parents who were both working professionals and of a middle class background. Since the mother had some minor complication in the first delivery and as there was an eight-year gap between the two pregnancies with maternal age at 30 years, a planned, elective Cesarean was carried out. The delivery was conducted at term and the developmental milestones of infancy and early childhood were normal.

The maternal grandparents lived close to Asma’s home and looked after the two grandchildren when the parents were at work. In the Indian grandparenting context, this was carried out diligently, with focus on every aspect of traditional child development, covering the spectra of nutritional requirements, discipline, academic performance and physical, mental and spiritual growth. Asma’s attention-seeking behavior, temper tantrums and need to win every event she took part in might have been influenced by the environmental situation, but it was distinctly excessive on any account.

Exploring the Condition

Premorbidly, Asma was described as being intelligent, cheerful, sociable, enthusiastic about participation in extracurricular events like dance and music, and though a slow learner at school, she was keen on overcoming her academic deficiencies with added effort, which the teachers recognized and were lenient when marking her.

Asma’s clinical problems manifested at the age of six years, with two types of bizarre episodes of a repetitive, stereotypic nature. The first involved jumping up and down 10-20 times, in a seated position, clapping hands and bursting into unprovoked laughter, which could not be described as totally mirthless. She was aware and able to answer questions during the episodes, which were associated with sweating and terminated, after a couple of minutes in a cough, as if she was choking. These episodes occurred frequently.

The second type, 15-20 episodes in 24 hours, occurred both while awake and in sleep initially, and later was confined to the sleep stage. The attack was of arousal, stare, movement of hips  up and down 5-10 times rhythmically (pelvic thrust), followed by a smile, hyperventilation and incomprehensible muttering for a few minutes and back to sleep. Initially she was responding to call during these episodes, but later she became unresponsive right through the episode. After basic seizure screening, in a city Epilepsy Clinic, which included neurological assessment, EEG and MRI neuroimaging, anticonvulsant therapy had been initiated, with some control of the frequency of seizures. Meanwhile, behavioural patterns, which were a clear departure from the norm for Asma had peaked, which caused great alarm to the family and school teachers at the mainstream school where she had studied from lower kindergarten class. The Principal of the school, who had known many childhood neuropsychiatric problems sorted out for them by the TriMed and Neurokrish team, referred the child to the medical facility, with a word of encouragement to the dispirited parents.

Our Healing Approach

When Asma presented to our service, accompanied by her parents, a month after the initial symptoms, she had clusters of 5-6 one-minute seizure episodes packed into 1 hour of daytime sleep and 3-4 two-minute nocturnal episodes. Bedwetting occurred once in two days, and only at night. The abnormal behaviours ranged from hyperactivity, aggression, abusive behaviour, biting, spitting, excessive and disorderly eating, to bullying other children, lying and employing overtly manipulative behaviours and defiant behaviour towards figures of authority. This was reported after detailed assessment by the Child Behaviour Therapist of Neurokrish.

The TriMed-Neurokrish team was alerted to gear up to fulfil their individual and collective roles in remedying the enormous challenge posed by Asma’s health problems. They had to bring into action (with mild variations, to suit the individual and the situation) the protocol for ‘Comprehensive Care for Epilepsy’- a best practice model for a resource-poor country like India, developed by Dr. E. S. Krishnamoorthy, to suit the sociocultural milieu and fine-tuned over the years of its use by him and his team members.

The basic requirement is a multidisciplinary team, which provides treatment, therapies, counselling and hand-holding for the patient and parents to get over the worst initial phase and to participate with hope even as they witness a palpable shift towards the positive phase of patient management.

Detailed medical and neurological examination of Asma revealed no overt clinical markers – neurological, endocrinal or genetic, suggesting a developmental disability or heritable trait. Repeated electroencephalograms (EEG’s) were abnormal with bilateral spike and wave dysfunction but failed to reveal any localization or lateralization of epileptiform activity. There was no suggestion of any syndromic epileptic disorder. Detailed testing of hematological, biochemical, endocrinal and metabolic, infectious and inflammatory parameters was non-contributory. Repeated MRI scans were taken, including  a 3 Tesla MRI scan, the last, to define even a minute lesion if present It failed to reveal any neurodevelopmental markers of significance. We looked for hippocampal sclerosis, cortical dysplasia and hypothalamic hamartomas in particular and these were eliminated.

It was the turn of the clinical psychologist to assess the patient using standard assessment scales; Binet-Kamat Test for general mental ability, screening test for specific learning disability, NIMHANS Neuropsychological Battery for Children for profiling the neuropsychological component and Raven’s Control Projection Test, to assess the child’s attitude towards parents, friends, likes, dislikes, fears and worries.  On these tests, she was found to have bright normal intellectual ability with an IQ of 119, mild difficulty in (the ‘three R’s’ as they were referred to in the colonial days! – ‘a’ being silent in arithmetic in its verbal rendering) reading, writing and arithmetic. She fell behind what was expected at her age. She also had problems in the areas of working or online memory, comprehension, attention (more frontal lobe related), visuospatial ability and mild memory deficit.

The projection test revealed “fighting with friends, problems at school and fear of ghosts”. While the child was cooperative and it was possible for the psychologist to establish rapport with her easily, she had a tendency to stray into phases of inattention, verbosity, playfulness and gnosis. This resulted in tests being incomplete. Given her general levels of comprehension, her ‘show of indifference’ to the overall predicament struck one as being altogether incongruous.  

“The basic requirement is a multidisciplinary team, which provides treatment, therapies, counselling and hand-holding for the patient and parents to get over the worst initial phase…”

The Diagnosis

Asma was diagnosed to have epilepsy with complex partial seizures originating from frontal lobe. Behavioural problems are known to occur in complex partial seizures of frontal origin, as are the selective areas of learning disability. Her inability to keep up with the class, further aggravated the abnormal behaviour, as she was obsessed with being a winner every time.

The child was started on Levetiracetam and Clobazam, two of the anticonvulsants in the list of drugs of choice for this type of seizure disorder, in a girl child of pre-pubescent age. Risperidone in small doses was introduced in an attempt to control difficult behaviours. Multidisciplinary interventions included behavioural therapy, neurodevelopmental and task-based occupational therapy (specifically with focus on attention, fine motor skills and handwriting) and remedial educational support after school for dysgraphia and dyscalculia. With family counselling, it was possible to persuade the family to cooperate even more, as they developed awareness of the child’s genuine health problem and the basis of the multidisciplinary approach. The management protocol was complimented by working with the school, counselling the Head and the teachers, developing a joint statement of special needs and building a therapeutic alliance with her concerned but informed and enthusiastic parents and grandparents. Developing a process of continued and consistent communication between the family, school and treatment team was well established, and continued over several years.

Over weeks, with titration of anticonvulsant drug dosage, her episodes remitted. With optimal use of risperidone and the therapies, her behavior pattern also became more manageable. Her problems with inattention, learning and academic performance did however continue. Although through the six-year period of comprehensive care, Asma had managed to remain in mainstream education, and continued to work with her behavioral therapist and special educator, she was advised by Dr. Krishnamoorthy to drop a year and to consider more flexible educational streams in order to cope and with less tension all round, as stress of studies, a board exam to face, failures etc., could exacerbate the seizures and the behavioural problems. Following this  advice and guidance, her parents sought admission for Asma in a city special school offering the National Open School stream. This stream allows choice of subjects with which the candidate is comfortable and he/she can take the school leaving examination, covering 2 or 3 subjects at a time at a hassle-free pace.

Epilepsy

The onset of any form of epilepsy can be devastating to the patient and family. It may repeat frequently or be moderate to severe, and persist through the lifespan, affecting education, employment, marriage and even independent living. Early diagnosis and treatment with anticonvulsants is essential. What is equally important is to have continued specialized and comprehensive epilepsy care to give the person with epilepsy a quality of life. Complex partial epilepsy of frontal origin are very uncommon, and can pose a diagnostic dilemma, unless the clinician has a clear knowledge of the condition. This is where a health care provider can draw from literature on the subject and know what others have said about it. A much cited author Williamson (1985), described “the complex partial attacks of frontal origin as brief, frequent attacks, complex motor automatisms, kicking, thrashing, pelvic thrusting, vocalization, while consciousness is maintained”, pretty much what our patient presented with.

Braakman (2012) undertook a comprehensive neuropsychological study of 71 children with cryptogenic (with no detectable lesion) frontal lobe epilepsy  (FLE) to report that,  “Across measures, the patients demonstrated a host of cognitive and behavioral impairments”, which again goes with Asma’s clinical picture and further confirmed by the presence of gelastic epilepsy.  Gelastic epilepsy (‘laughing epilepsy’- Gelastikos in Greek meaning laughter) is a very rare epilepsy form, and is most frequently due to a benign tumour in the hypothalamus, but may also originate from the frontal or temporal lobe. Unnwongse (2010) recorded the symptomatic zone of laughter in the frontal lobe of a patient with gelastic epilepsy, employing intracranial video EEG. Benge (2014) observed that Executive Functioning, which is the ability to initiate volitional responses, plan, decide, and monitor performance is one of the most frequently impaired cognitive constructs in FLE. The frontal lobes have a critical role to play in memory functions as well, including organization and encoding of information to be learned, memory retrieval, and prospective memory. Attention and working memory difficulties may add to the cognitive deficit.

With all these areas of deficit, it is not surprising that the patient manifest learning disability. The clinical psychological assessment at baseline with performance score recording, when the patient started the treatment regimen, followed once in 3-6 months, will give a clinical evaluation of the progress, status quo or even regressive tendency, correlating with the real world patient’s all round performance, and carry with it projection and prognostication value. 

  • Braakman HM, Ijff DM, Vaessen MJ, Debeij-van Hall MH, Hofman PA, Backes WH, et al. Cognitive and behavioural findings in children with frontal lobe epilepsy. Eur J Paediatr Neurol. 2012; 16: 707-715.
  • Williamson PD, Spencer DD Complex partial seizures of frontal origin Ann Neurol 1985 Oct.; 18,(4), 497-504
  • K. Unnwongse,  Wehner T,  Singaman W Gelastic Epilepsy and the anteromesial superior frontal gyrus Epilepsia Vol 51, issue 10, 19th March 2010
  • Jared F Benge, J Michael Therwhanger, Batool Kirmani The Neuropsychology of Frontal Lobe Epilepsy: A Selective Review of 5 Years of Progress. J. of Neurological Disorders and Stroke, Special issue on Epilepsy, May 2014, 2 (3), 1057

Our Focus:

Comprehensive Epilepsy Care

Comprehensive Epilepsy Care is about targeting patients, caregivers, healthcare professionals and society at large with focus on helping the person with epilepsy minimize stigma, achieve optimal activities of daily living (ADL), health related quality of life (HRQoL); social, educational and occupational milestones. It enquires into the goal of each treatment or therapy employed within a time frame, while including the patient’s (and their relatives) subjective evaluations and perspectives. There is considerable evidence to suggest that information, education and understanding help people deal with their condition better, as ‘knowledge is power’. There is also evidence in epilepsy that psychosocial interventions improve outcome. For the team to plan the intervention effectively, it is imperative that the problems diagnosed in the clinical or lab setting is converted to understanding their real world correlates and this derived knowledge is applied towards holistic and individualized patient care.

Looking Ahead

Asma has remained seizure free, has not shown any further behavioral decompensation and remains aligned with the therapeutic team and school. The parents express their heartfelt thanks everytime they come to TriMed for follow up. The Child Behaviour Therapist, in her inimitable way says that she will take Asma’s self confidence and self esteem to the next level as she enjoys total rapport with Asma (as with other children), teases and chides her and in turn hugs her to show appreciation. The Trimed-Neurokrish team is happy to deliver patient-centred, holistic healthcare with patience and diligence as a team in the midst of a modern consumerist healthcare environment.

Categories
Adolescents Anxiety Autistic Spectrum Disorder (ASD) Buddhi Stories Children Featured Neurodevelopmental Disability (NDD) Patient Stories

Surya – Conquering Anxiety

Surya – Conquering Anxiety
Surya – Conquering Anxiety

Biography

Surya was the first born, delivered full term by lower segment Caesarian section, the indication being a big baby weighing 3.4 kg with a large head and cephalo-pelvic disproportion. The Apgar score was 9/10 (excellent). There was no neonatal seizure or any other health-related event of significance in the neonatal period or in infancy. With the passage of a few months the parents noted that the infant’s response to familiar people, even to them, lacked spontaneity, and eye contact was sparing. He was preoccupied with repetitively examining one favourite toy over a long period of time and this form of restricted play continued into childhood. He did not walk till almost 2 years, and even when he did, he was awkward and had frequent falls in the early phase. It was, however, the delay in the speech/language milestones with the first few meaningful words expressed at 2 years, that caused greatest parental concern.

At this stage, a diagnosis under the broader umbrella of Autism Spectrum Disorder (ASD) – Pervasive Developmental Disability – not otherwise specified (PDD-NOS) was arrived at by the specialist in USA and early therapies were started. The parents stuck to the specialist advice to confine the child’s exposure to a single language and English served the school and home front. On joining school at three years, there was some improvement in his verbal expression, but by 4 years, with the family back in India, from abroad, he had achieved wider language and communication capability. This is the magic gift that Indian children born abroad receive on exposure to the Indian milieu, even short-term, where grandparents, aunts, uncles and cousins, chatter incessantly, not necessarily in English, but also in their child-focused affection, rally round to address the child face-to-face!

Exploring the Condition

Surya’s speech, which lacked clear enunciation, accent and prosody, and had a nasal quality, required special attention and the child had regular speech therapy from the age of 4 years, aside from occupational therapy and special education outside mainstream schooling. Surya manifested restlessness, easy distractibility, poor motivation, social anxiety and on occasions, impulsivity, which also required correction. When he was brought by his parents to TriMed-Neurokrish two years back, at age 9 years, they appeared as stressed as Surya himself. As a high performing ASD, he had managed to barely cope with mainstream schooling upto the primary grades (ICSE Board syllabus), with poor math skills and dyslexia. Anxiety was mounting as he progressed to high school level with its academic demands. To add to the displeasure at school, he was bullied by the other children, who did not let him join them in the ball games offered, as he was slow and clumsy. When this awkwardness was analyzed by the specialist, it pointed to poor hand-eye co-ordination as a main cause. School refusal started to set in and the parents recognized the red flag signal which called for more intensive professional attention. A close friend suggested TriMed-Neurokrish as a possible solution to the child’s learning disability and emotional  problems.

Surya had got this far academically, without major behavioural problems, as all along, the mother had dynamically participated in fulfilling his study requirements and emotional needs and the school had been supportive. His mother, a well educated, perceptive lady, continued to follow the special education methods at home, which she observed during the child’s sessions with the special educator. His spelling skills took a big leap forward when he was taught by the phonetic method. The mother spent long hours with Surya over his homework, partly by following rote learning methods, though by elaborating on the topics’ ramifications, she managed to bring in some conceptual learning, which ensured better retention and recall in him. Math skills were just picking up at a basic level, but Surya was happy to run up to the corner store to purchase some small items of grocery the mother requested, and managed every time to bring back the correct change.

Our Healing Approach

At TriMed-Neurokrish, a comprehensive assessment, by the team members was carried out with meticulous care. The child was thin built, with dysmorphic features, with a narrow face, low set ears, close set eyes, and a tendency to keep the lips parted slightly, the last due to a chronic sinusitis and nose block. No other abnormal systemic signs were observed and laboratory tests were unremarkable, except for low D3 levels, which was corrected with oral medication. We had a team meeting to formulate a list of priority moves to gain effective control in the management of Surya’s educational and psychosocial problems. A diagnosis under High functioning Autism Spectrum disorder – Pervasive Developmental disorder not otherwise specified (PDD-NOS)/Asperger’s syndrome (based on the Sohn Grayson Rating Scale) with Learning Disability (LD) was arrived at, and the broad management plan was discussed.

The immediate goal was:

  • To reduce Surya’s anxiety levels and get him to attend school regularly, a few hours initially, progressing to full day attendance
  • To overcome separation anxiety when the mother dropped him at school and left
  • To motivate him to engage in other activities than studies
  • To work on his fears and phobias of ‘robbed’, ‘kidnapped’, ‘killed’ which disturbed him
  • To offer caregiver support to the mother who was highly stressed

By way of medication, Surya was given Attentrol – (Atemoxitine) to improve his attention on tasks along with a anxiolytic.

The Clinical Psychologist found his academic performance adequate, based on the NIMHANS Battery (Specific Learning Disability Index). Regarding his special academic needs, with long term coaching outside school, Surya was able to cope with reading, writing (including spelling), at his 8th grade levels, with math ability at 5th grade levels. His handwriting skills were poor due partially to defective fine motor control and his focusing power on tasks required reinforcing with repetition. All these deficits put together made him very anxious regarding coping with studies.

Our intensive therapy for Surya followed our protocol for children with Neurodevelopmental Disorders (NDD) and included a combination of two Ayurveda treatments (Shirodhara & Abhyangam), Play Yoga, Neurodevelopmental Therapy (NDT, a combination of physical and occupational therapies, in his case with a handwriting focus) and psychological therapy (behavioral and family). Sessions of NDT and BT often continue for months in regular periodicity, and include weekend opportunities to meet with peers (also in therapy), socialize, and develop skills of emotional expression. Later, understanding his fondness for ‘gadgets’ we involved him in a cognitive enhancement program using structured computer based gaming to enhance specific cognitive skills.

Our team, after much deliberation, suggested to the parents, special education for Surya at a school of excellence, and with the Open School Examination system offered there, he settled to a comfortable pace of school work.

The special educators of the school, in dialogue with Surya’s parents, chose subjects for him that he would be able to comprehend and work out in a relaxed manner, and which would lead him to a future career as a high performing ASD. In this more relaxed school environment, the child overcame his fears and the separation anxiety was no longer a problem. Day-to-day, moment-to-moment caregiver stress was significantly reduced in the mother, who decided to expose Surya to other activities than studies as suggested by the TriMed-Neurokrish team. Coaching in swimming and keyboard playing were chosen as two diverse activities (with the mother joining the coaching sessions as well) which would benefit physical fitness, cognitive ability, concentration, fine motor activity, musical sensitivity, sensory integration and many other finer aspects of development in the child.

Surya’s motivation and empathy to go with the mother did not last for long and the ASD trait of preference for routine and repetitive activity prevailed. He preferred to unobtrusively sit watching his mother, as she completed the courses successfully and went on to the next level of training with the hope that perhaps Surya would get back to these activities some day with gentle persuasion and the slow but sure outcome of goal-directed CBT! She brushed aside this wishful thought and got back to the present with its encouraging progress in Surya.

He was however, enjoying his Behaviour Therapy and Cognitive Enhancement sessions at Trimed-Neurokrish and the team members gave of their best to sustain Surya’s interest through the sessions. He continued to listen to music, most often a favourite tune and beat repeatedly. He responded positively to engage in a short-term novel activity for which he was rewarded. In a BT session to learn how to tie his shoe-lace, his motivation was that he would get new shoes, and sure enough he mastered the skill in two days! What worked towards motivating Surya without fail was the reward in the form of a car ride, to undergo any new learning process. So the team went through BT for activities of daily living, interaction with strangers, mentoring and token economy, in a graded manner, to more advanced cognitive enhancement paradigms of arithmetic tasks, logical reasoning and critical thinking. Incorporating the subject’s areas of special interests in therapy, using visual aids and including parents in therapy sessions, the benefits of cognitive behavior therapy and cognitive enhancement became apparent.

“In this more relaxed school environment, the child overcame his fears and the separation anxiety was no longer a problem.”

Our Focus:

Autistic Spectrum Disorder

Autistic spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges. Autism represents an unusual pattern of development beginning in the infant and toddler years. Language  and communication, learning, thinking, problem solving, social interaction, stereotypy and other behavioural  patterns, lack of empathy and performance of activities of daily living may show varied levels of involvement. Neuropsychiatric and neuropsychological evaluations in Autism have revealed selective dysfunction of ‘social cognition’, with sparing of motor, perceptual and basic cognitive skills1. According to DSM IV the spectrum of autistic disorders comprise autistic disorder, Asperger’s syndrome, pervasive developmental disorder not otherwise specified, including atypical autism (PDD-NOS), Rett’s syndrome, and childhood disintegrative disorder. When full criteria of the five under this umbrella are not met, it falls under the category of PDD-NOS. High functioning Autism Spectrum disorder – Pervasive Developmental disorder not otherwise specified (PDD-NOS)/Asperger’s syndrome is diagnosed by employing an assessment questionnaire for the subject’s parents named the Sohn Grayson Rating Scale, a questionnaire for the subject’s parents, covering the academic, cognitive, psychosocial and other domains, which may indicate a higher performance and atypical pattern of the spectrum in the subject studied, as in our patient, Surya. Before this instrument is used, there are over seven diagnostic tools for ASD, including Autistic Behavioural Checklist, Autistic Spectrum Screening Questionnaire and observational tools which must be employed on subject to be tested.

Global prevalence of ASD is about 1.5 per 1000. There has been a 600% increase in prevalence over the last two decades. In a multinational study, the point prevalence of ASD was 7.6 per 1000 or 1 in 132 in 20102. In India more children with ASD are being identified, earlier than before and as a result, early intervention is possible with developmental disability institution being made available in the public sector as well. But these are few and far between. The average age at presentation to the clinic in India was 21.23 months (SD = 2.18)3. They present clinically in a manner similar to that reported internationally. Awareness among professionals and the public is increasing over less than a decade.4  As yet, there is no aetiology-based intervention for autistic spectrum disorders (ASD). However, symptomatic treatment and therapies with a cognitive-psychoeducational/behavioural approach  can be of value in moderate ASD5.   

References

  1. Vaghbatta. Shirodhara AshtangaMisra V. The social brain network and autism. Annals of neurosciences. 2014 Apr;21(2):69.Hridaya, Sutra Sasthana, Chapter 22
  2. Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG. The epidemiology and global burden of autism spectrum disorders. Psychological medicine. 2015 Feb 1;45(03):601-13.Ajanal Manjunath, Chougale Arun Action of Shirodhara– A Hypothetical Review J Res. Med. Plants & Indigen. Med. Sept. 2012 1;  9 : 457–463
  3. Malhi P, Singhi P. A retrospective study of toddlers with autism spectrum disorder: Clinical and developmental profile. Annals of Indian Academy of Neurology. 2014 Jan;17(1):25.
  4. Malhotra S, Vikas A. Pervasive developmental disorders: Indian scene. Journal of Indian Association for child and adolescent mental health. 2005;1(5).
  5. Francis K. Autism interventions: a critical update. Developmental Medicine & Child Neurology. 2005 Jul 1;47(07):493-9.

Looking Ahead

Surya is relaxed in his new school, and stress and anxiety of school work has left him. He is catching up with many ADL, and is even more motivated to do so with a reward at the end of each novel learning process. With improved performance and by dispelling his fears and phobias through logical thinking taught to him at the CBT sessions, Surya has conquered many of his fears and phobias and to a considerable extent his social anxiety.

He continues his CBT/CET and follow up at Trimed-Neurokrish, twice a week and the team is more than pleased to receive him for his sessions, as there is good compliance and palpable progress with each visit to the clinic.

The parents are at peace and are relieved to have found a centre which offers a holistic approach towards Surya’s all round development.

Categories
Adolescents Autistic Spectrum Disorder (ASD) Buddhi Stories Children Depression Featured Patient Stories

Ragini – Her Uphill Battle

Ragini – Her Uphill Battle
Ragini – Her Uphill Battle

Biography

It was a full term natural delivery. The newborn was small at 2.7 kgs. There was no complication of pregnancy and mother and infant were well. Motor milestones followed a normal curve, but language was delayed till the age of five years. Strangely, musical expression preceded language and by 2 years 6 months, Ragini lisped in melodic sequences, as melody with lyrics came with ease. She belonged to yet another traditional south Indian family where music occupies the whole day, from the TV devotional music broadcast at the break of dawn, the bathroom singing by the father relaxing through an evening lukewarm shower after the day’s work, till into the night, when the mother sings the infant to sleep – that ‘soporific lullaby’ which never fails! However, nurture alone cannot explain the child’s musical ability, which advantage she carried without losing ground, into adolescence and adult life with formal vocal classical music instruction. The family being resident in the West, she received higher grade training in Western classical music as well and got into the stride of it with no extra effort.

Exploring the Condition

Ragini had poor communication skills, sub-average intelligence on the Wechsler Intelligence Scale for Children (WISC), language processing difficulty, perceptual thinking deficit and social fears and phobias when examined in childhood. She became irritable and frustrated, as coping with routine stresses, given her condition, became increasingly difficult over the years, and she showed significant disruptive behaviour at about 10 years of age by way of aggression. Following a psychiatric assessment, she was started on Tab. Risperidone, an atypical antipsychotic to control the irritability of the Autistic Spectrum Disorder (ASD) and to reduce her depression. She continued Risperidone till the age of 19 years, went through mainstream schooling, as she was a high functioning ASD, and successfully completed a Certificate Course in Vocational training.

In 2013, Risperidone had to be withdrawn, due to tardive dyskinesia, and Clonazepam SOS was prescribed. Two years passed peacefully, off medication. With the support of her well educated, discerning parents empathetic to her needs, Ragini established her own space in her music studio,  where she could listen to music, catalogue the music videos in her collection  in the studio library, and even give musical training to groups. All this was encouraged by her parents, mindful of her problems as it also represented an attempt to organize herself into some self employed music-related career, in an area closest to her heart. However, largely alone in the studio also left her isolated and socially withdrawn. Perhaps due to this a feeling of helplessness, hopelessness and worthlessness descended upon her, and she had suicidal ideation. She was emotionally sensitive, eager to please, but did not have the ability to take criticism. Symptoms that started insidiously, reached a peak within 6 months, in mid-2015. She became severely depressed.

Escitalopram (antidepressant) and Quitiepine (an atypical antipsychotic) prescribed by the psychiatrist could not bring about any control. After a further 5 months of rapid mood swings, crying, shouting, explosive episodes of dyscontrol and threats of leaving home, the mother brought Ragini to India, hoping that a change of environment would help in some way to ease mounting family tensions. She had information about the multidisciplinary approach and integrated therapy offered by TriMed-Neurokrish and fixed an appointment for Ragini.

Our Healing Approach

It was not easy for the team at TriMed-Neurokrish to thaw the ice and make Ragini accept that the specialist team was there to help her. Once this was achieved even partially, with gentle persuasion, the flow of the assessments became smoother, with cooperation from the patient. The diagnosis and plan of management fell in place with the detailed clinical history of events that led up to the mental state at the time of assessments and clinical examination.

Her Rorschach Inkblot test produced 22 responses, meeting the perceptual thinking and coping deficit index. She had severe depression and a feeling of worthlessness. EEG showed significant epileptiform activity without localization or lateralisation. She had a past history of episodes of stare with momentary loss of consciousness. Blood test and MRI/MRA brain were unremarkable.

The Diagnosis was Autistic Spectrum Disorder (High Functioning) with Rapid Cycling Affective Disorder and Episodic Dyscontrol Syndrome. Arriving at a suitable drug regimen was more difficult and prolonged, with loss of precious time, as 2 anticonvulsants used as thymoleptic agents had to be rejected as Oxcabamazepine produced a moderate allergic response, and even worse, Lamotragine produced a Steven Johnson’s type adverse drug reaction. After allowing time for recovery from these drug reactions, the patient was stabilised on a drug regimen which she tolerated well, along with an extended program of therapies running parallel.

The regular medication was

  • Lithium (sustained release) 400mg – 1/2-0-1
  • Olanzapine 10mg – 1/2-0-1
  • Escitalopram 1-0-0
  • Lorazepam 2mg – 0-0-1
  • Vitamin supplements

The mood stabilising, antidepressant and anxiolytic effect of this drug combination was reinforced with 24 sessions of CBT, individual psychotherapy and family education, 11 of physiotherapy (grade 2), 34 of Acupuncture, 20 of Reflexology, 34 sessions of Shirodhara and whole body massage and 24 sessions of Yogasana, intensive and daily over the initial phase and then spaced out to 3-4 days a week.

“There is considerable evidence suggesting that a subset of Pervasive Developmental Disorder (PDD), youth with extreme disturbance of mood suffer from a symptom cluster that is phenomenologically consistent with the syndrome of Bipolar Disorder (BPD)”

Joshi, 20091

Longitudinal studies are essential for observing the onset and progression of co-morbid condition of Bipolar disorder in ASD.

“It is of importance to recognise both the psychiatric diagnoses of ASD and overlapping BPD in order to plan the drug regimen, therapies and set realistic treatment goals.”

Looking Ahead

Following the extended therapy program and after being stabilized on the drug regimen, there is a definite return of Ragini’s lost self esteem, which had been shattered during the downhill phase. Her mood swings are minimal, and there is no episodic dyscontrol. The mother admits that she came with the hope of some relief of Ragini’s symptoms of aggression and dyscontrol. She got much more from the team at TriMed-Neurokrish, she confessed, and feels that the situation is under control and has the hopes to settle her daughter’s future plans of home and career within reasonable goals.

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