Category Archives: epilepsy

Reboot Fate, Kanika Is Here!

Reboot Fate, Kanika Is Here!

© Dr. Rajas Deshpande.

At 12 years she was on the top, an athlete who also won the scholar badge for three consecutive years and special honors at her school. Just then, a rare neurological condition played havoc in her life. She had multiple tumors, suffered a paralysis, was wheelchair bound for over two years. Then she suffered from depression, suicidal thoughts, high blood pressure, and multiple health issues which sometimes threatened her life. She had to leave school. She suffered bullying by kids her age, she had severely painful muscle tears that made it impossible to move hand and leg. Many hundred blood tests, some invasive procedures like lumbar punctures, and even a biopsy were all inconclusive. She also went through medical horrors: rude doctors, huge expenses and uncertainty. Her diagnosis is still not fully established.

But her status as a winner in the battle with fate is well established. Meet Kanika Kesri. She walked again after two long years today.

In August 2015, Kanika started having fever and severe headaches, and started becoming weak. Lot of tests were done, and she was found to have a tumor in her abdomen. A surgery was planned in Delhi, she was taken there. The specialist decided to first biopsy her tumor. The biopsy revealed a possibility of tuberculosis, so anti tuberculous medicines were started. She developed paralysis of the face and eyes, nothing could be done as the only medicines that could improve her condition – steroids- could cause dangerous worsening of her tuberculosis. In December 2015 she developed weakness in the left leg and could not walk. An MRI done then showed that she had developed multiple tumors in the brain and spine. She was then diagnosed with the most dangerous and often fatal form of tuberculosis: MDR (Multi Drug Resistant) Tb.

She was started with additional medicines and her parents were told that nothing more could be done. Her condition worsened during one of the lumbar punctures and she became bedridden, almost completely dependent. Someone told her father one of the worst medical possibilities: that this could be some form of cancer.

One of my earlier patients, Mr. Rahul Agarwal, brought Kanika’s father Mr. Pankaj Kesri to me in a devastated frame of mind. Lost in uncertainty, extremely angry at the behavior of some doctors, and frustrated with the expenses while being away from the job for a few months, he was still very polite and humble.

Her case was indeed baffling. I went through all the details, involved my colleagues at Ruby Hall Clinic, and even some of my teachers in Mumbai. The answer was almost the same everywhere: don’t know what this exactly is, but don’t stop the anti-tuberculous medicines.

Something was wrong, the girl was deteriorating in spite of taking the tuberculosis treatment. In a discussion with her parents, when her father said he had complete trust in the way we were treating her, I put forth an option: to give Kanika steroids, and if she improved, to consider withdrawing the anti-tuberculous medicines. This involved a serious risk to her life if her presumed tuberculosis worsened. With a very heavy heart, her family consented.

We started steroids. Kanika improved. We stopped the tuberculosis medicines. She continued to improve. She could now stand with a walker. Unfortunately, twice during physiotherapy sessions, Kanika tore her muscles: once in the thigh, which made it impossible for her to walk. She was bedridden again.

Till this time, Kanika was all positive, vigorously working to recover. The long illness now started to affect her mind. She became depressed, her sweet smile vanished. She tried to join school, but isolation and bullying worsened her mental agony. She started having suicidal thoughts. Very mature for her age, Kanika decided even in that condition that she was going to defeat the situation. She confessed about her thoughts to her parents. We arranged a counsellor for her. Just as Kanika started to recover from depression, the side effects of steroids started to come up: weight gain and high blood pressure. New blood pressure medicines were added. There are some alternatives to steroids, but she did not tolerate them.

Kanika wanted to study further. She joined home schooling, an excellent option made available by the central government, through NIOS (National Institute of Home Schooling).

One of the most complicated cases I have seen in this young age group, Kanika suffers from a very rare autoimmune condition. Her immune system has some dysfunction that causes multiple tumors in her body, these tumors usually resolve with steroids as they suppress immune system. The closest condition that resembles this is known as Neuro-Sarcoidosis, but some of Kanika’s tests for this were negative too.

Kanika’s parents chose to always come across pleasant and polite. “I know my daughter’s health is above all my complaints. I have chosen to concentrate on the positives” Mr. Pankaj Kesri says. Kanika’s mother Mrs. Rajni had to face a double-edged problem: while adolescent Kanika developed many ups and downs in her moods, Mr. Pankaj Kesri was transferred out of Pune. Mrs. Rajni fought alone on many fronts, while also looking after Kanika and her elder sister Kritika, who they call their pillar of strength.

It all was rewarded today, when Kanika walked without support after almost two long years. I was so happy with the miraculous moment, that I called upon my CEO, Mr. Bomi Bhote, who has always encouraged highest standards of medical care, leaving no stone unturned to bring it under his roof. He was so happy to see Kanika walk again, that he recorded the moment himself. “My wish is to see you run” he told a smiling Kanika.

We learnt a lot: many a times, some patients tolerate a lot while facing medical issues: the worst being a rude doctor. We doctors must ourselves ensure that we offer the best compassionate counseling to each such patient before we demand their faith and trust. It is never automatic. The process of medical care is an ongoing one, and it must be guided by a single principle: decision making in the best interests of the patient. A lot of study and awareness of medical advances on a daily basis is essential.

Kanika to us is an example of exemplary courage, grit, maturity, positivity and patience. She is a role model for anyone who is going through a negative medical phase. May she get back to normalcy soonest possible, may she recover completely, may she achieve whatever she sets out to achieve. She has proven many times over till now that she is a born winner.

In the beautiful moment that Kanika walked again, I found the blessings of my parents and teachers.

© Dr. Rajas Deshpande

PS: Thank You, Ms. Kanika, Mr. Pankaj and Mrs. Rajni Kesri for permission to share this story of courage.

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The Most Precious Jewels Upon Earth

© Dr. Rajas Deshpande

“Sir, next is our old free patient” my receptionist announced on the phone.

Divya, the smart young girl of 8 years jumped into my cabin, and grabbed her chair with an authority. Confidently looking at me, she questioned, “how are you today?”

Her parents, embarrassed and charmed at the same time with her sense of ease in this big hospital, facing a doctor, hesitantly stood behind her. I requested them to sit down and went through the routine questions.

“She is all good now, no fits since last two years. She has been regular in her school and has started studying well too” her father reported.

I examined her and wrote her a renewed prescription. I noticed the mother wiping tears.

“What happened?” I asked.

Quickly smiling, she just gestured with her head “nothing” and looked at her husband.

“Do we need any tests, Sir?” Her husband asked, “We will do whatever is required”. I could feel his palpitations. They were scared that I may tell them tests, and that would mean financial disaster.

He works as a pantry boy and can barely pay the home rent with his salary. His wife somehow makes ends meet, looking after this sweet daughter and a younger son.

At the age of five, Divya had had her first convulsion. Her parents had rushed her to the government hospital. They did not have the money required for Divya’s tests and medicines even at the government hospital. So they resorted to something that hurt them worst: they had to sell little Divya’s silver jewelry, which was the most precious thing in their house. Even that was not enough, so they borrowed money and started her treatment, her father worked extra hours.

That was about three years ago. Divya’s fits continued, but her parents did not give up. Their whole life had but one aim: to stop her fits. Even after being less educated, Divya’s parents decided to go with scientific treatment, ignoring all pressures to take her to different weird people including magic healers. They did not give up hope, their will power was their boon.

Two years ago, a doctor friend sent Divya to me. With some changes in prescription, her fits completely stopped, she has now become just another normal child.

“No tests are required. Please make sure that she is regular with the medicines” I told them.

As I wrote this, I got a little emotional myself, this was the first time I had heard of any parents having to sell their daughter’s jewelry for her treatment. On one side, I was proud that even after being surrounded by perpetual pits of poverty, this girl child’s parents did not skimp upon her treatment just because she was a girl child (this often happens), but on the other I felt anger and shame that my country still lacks a basic healthcare infrastructure that can offer free quality treatment to at least children.

Yet, this had taught me my lesson. Willpower and hope are the mightiest and most precious jewels upon earth, far tougher and far more beautiful than any diamonds. For there are many who own diamonds but have neither willpower nor hope.

Meeting this rich family today was joy enough, but a greater bliss was when the kiddo put her arm upon my shoulder with the same confidence. The world is indeed hers!

© Dr. Rajas Deshpande

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“Alive Or Dead?”

(c) Dr. Rajas Deshpande

“I saw the news myself. The doctors declared her dead. They took her home. In a few hours, her son noticed her breathing, they immediately took her to another hospital, where she became conscious. Doctors are absolutely careless now a days. All doctors and hospitals work for only money..” the hefty dark man with a large moustache was telling this story loudly to a group of about eight people sitting around him, three of them quite pretty, young and attractive.

“Yes,”replied another, tall and fair, but with a shrill voice: “Doctors have become butchers now. My friend’s father suffered a head injury, and was dead on the spot. But the doctors told us he was alive and kept his dead body on the ventilator for five days, saying that his heart was beating. All for money”.

I was sitting in the cafetaria of our hospital, it was nearly ten at night. I had just attended a call for a patient of convulsion, in the recovery room , where patients are kept for a few hours after major surgeries. . The patient, who had had fits since childhood,had presented with heart failure due to a defective heart valve, and had undergone a major heart surgery to replace the valve just two days ago. He had had another fit. The cardiac surgeon Dr. Ramnath had personally called and requested me to rush and assess the patient. He was quite worried, like most surgeons are after major surgeries. After making some changes to the patient’s prescription, I called up and informed Dr. Ramnath. He was relieved “Thank you, Rajas. Will you please wait in the cafetaria? I would like to have a coffee with you” he had said. (c) Dr. Rajas Deshpande

That’s why I was waiting in the cafetaria, as usual my back towards the world. The group sitting behind me probably wasn’t aware that I was a doctor, or likely had chosen to ignore it.

In the next ten minutes, there followed many anecdotes by various members of that group: that allopathic treatment is costlly yet useless, all doctors are sold to the drug companies, that humanity has vanished from the medical profession, etc.

The most beautiful sign of growing up is not reacting to a certain type of people. I practised it, although rattled with all that I had heard.

Dr. Ramnath walked in. His trademark fast pace and smiling face brightened the small cafetaria.

“Hi, Rajas, sorry to keep you waiting. Much obliged that you could come. I have just seen him. Oh Hi..!” he said, noticing that two people from the group stood up.

“Namaskar doctor! How is our patient? ” asked a person with the moustacheo.

“He is quite stable now, all is well. I will shift him out tomorrow if everything is okay” Dr. Ramnath said.

“Then why did he have a fit? Why didn’t you tell us that could happen?”asked the moustacheo. He had found a gentleman, polite, highly educated doctor replying his questions courteously, this was his chance to misuse it to impress the three PYTs in the group. (c) Dr. Rajas Deshpande

Dr. Ramnath’s smile vanished. “I had explained to the patient’s family. May I know who you are?” he asked to the moustacheo. Even a surgeon has limits to the misuse of patience.

“I am patient’s father’s friend” he replied, his voice on an offended backfoot.

“Please see me in my office by making an appointment”Dr. Ramnath told him.

We went over to another corner of the cafe and ordered our mutual favourite Italian Roast black coffee. (c) Dr. Rajas Deshpande

Two weeks later, the patient came to my OPD for adjustment of the fits medicine. The moustacheo came too. The patient had recovered magically, now living a new life. I told the family so.

The moustacheo was not yet satisfied. He asked many questions. I had most answers. At the end of it, I asked him what he did.

“I work as a commission agent in property deals” he told me.

“If I may ask, how much are you educated, and in which field?” I asked him.

“Oh I left school after tenth standard. Why?” He was offended.

“Can you google?” I asked him.

“Yes” he said proudly.

“Please read about ‘Lazarus Syndrome’” I told him, writing it down on a piece of paper for him.

There are many examples all over the world, where a patient’s heart stops functioning, and doesn’t respond to the usual measures of CPR / resuscitation, but automatically starts beating again after a few minutes, and the patient becomes conscious later. This is called the ‘Lazarus phenomenon’. It happens because of a complicated combination of chemical, electrical and physical changes in the heart, even many minutes after it stops. This has been reported more than 38 times all over the world. However, it is only in India that doctors are beaten up, hospitals vandalised, and the media earns crores by shouting poisonous about this headline. One state government even shut close an entire superspecialty hospital because of such incidence! (c) Dr. Rajas Deshpande

On the other hand, if a doctor tries to keep the patient alive even when the brain has stopped functioning, or the heart is failing, then some of our less educated muscular bollywood heroes cry foul about the entire highly qualified medical profession, that “doctors are keeping dead bodies on the ventilator to extract money” and even slap doctors in the hospital on the screen, to impress their quality of box office. Maybe we must call these “Ëxperts of life and death” in media and bollywood to treat every patient, to perform operations, and even to certify every unfortunate death that may happen in some cases. It is because of this poison spread by these ‘pseudo heroes’ at the cost of the best doctors in the world, that even after the best outcomes at the cheapest rates, Indian doctors have to face the bitterness and wrath of our society.

Whether a patient is “Dead or Alive”? Everyone in India other than qualified doctors seems to know better!

(c) Dr. Rajas Deshpande

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The Tribe and The Ring

(c) Dr. Rajas Deshpande

“Before coming to India, I searched a lot and bought this holy stone for you, the same one I was given as blessing for a good future. I wear exactly the same ring. As a mark of my gratitude for the treatment my son Hathim received in India, we want to make you a part of us. Please wear this ring” said Mr. Jade from Yemen.

About a month ago, he had left for Saudi Arabia, leaving his children back in India, to continue treatment. His younger son suffered from a very rare type of epilepsy (Lennox-Gastaut Syndrome) of uncontrolled fits / convulsions and was not mentally growing up well. The 16 year old elder brother cared for the younger one, as they stayed at a rental house in Pune. The case was very difficult, and I had to seek help from my teacher Dr. Sangeeta Ravat in Mumbai, who suggested crucial inputs in managing the kid. Fortunately, the fits are now controlled well, and the father arrived in India to take back the kids to Yemen.

He not only gifted a bag of perfumes, dates and sweets from his country (most Arabic patients, however poor, usually bring gifts for the doctors they visit), but also personalised the bond by bringing for me the same ring that someone had given him for a good fortune. Superstitions apart, but wishing for someone the same that one wishes for oneself is the core of almost every religious text.

Of course the major credit here is that of my teacher Dr. Ravat. I did nothing extraordinary, many doctors treat their patients with their soul, and get excellent results. The reason for this post is the pride of belonging to that tribe called “Doctors” which breaks not only the boundaries between countries, but all the walls between cultures, languages, and societies. This “Doctor”tribe has the rarest opportunity in the world: a free entry in the heart of any human being anywhere upon earth!

This ring is dedicated to that tribe: all doctors who have gifted health and life to millions.

As the beautiful kid travels back to his country, we pray for the best health and happiness for him and his entire family!

(c) Dr. Rajas Deshpande

With Mr. Jade, Master Hatham, and a friend Ms. Arwa.