The inaugural episode of Patient Talks is with Mr. Manoj who is a real life hero. For the last eight years he is fighting one of the most challenging health issues of his son (epilepsy patient) but never ever he gave up. His philosophy in life is “Every problem has a Solution”. I am humbled and honored to bring the story of his family to all of you. It is a story which would inspire all of us to never give up.

Mr. Manoj takes us through his family’s journey. He shares with us:

  • How and when epilepsy of his son was diagnosed?
  • Impact of epilepsy on the social and family life.
  • The medicine based treatment, its duration and failure to cure epilepsy.
  • His exploration of epilepsy surgery as an option for his son.
  • How family arrived at a decision to go for epilepsy surgery for his son.
  • Epilepsy surgery outcome and post surgery recovery of his son.
  • Key learning from the experience which can be leveraged by other patients.

Language: Hindi
English transcript available at https://drstories.com/

#Epilepsy #Epilepsysurgery #drugresistantepilepsy

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Transcript

Patient Talks: A fight of a family with epilepsy. Every problem has a solution.

Discussion with Mr. Manoj

Speaker: Mr. Vivek

My guest today is Mr. Manoj who is a real life hero. For the last eight years he is fighting one of the most challenging health issues of his son but never ever he gave up. His philosophy in life is “Every problem has a Solution”. I am humbled and honored to bring the story of his family to all of you. It is a story which would inspire all of us to never give up. Mr. Manoj is a software professional. His family consists of his wife, a housewife, and two children. His elder son suffers from epilepsy by birth. It was kind of Manoj to agree to share with us his experience in managing the epilepsy of his son. Welcome Manoj.

Speaker: Mr. Vivek

When did you find out that your son has epilepsy?

Speaker: Mr. Manoj

On the seventh day of his birth my son had his first seizure. At that time myself and my wife did not know that it was an epilepsy seizure. We thought he shivered due to the cold. We took him to a doctor who suggested keeping him in the incubator. My son was in the incubator for 15 days. We still didn’t know he had epilepsy. For the next six months he was perfectly fine. Then one day when he was seven months old my son again started having seizures. We met a child neurologist. The neurologist told us that the symptoms are of epilepsy. The MRI and EEG was done. The doctor after studying the reports confirmed that my son has epilepsy. Doctor prescribed a medicine and advised that in some cases, with the help of medication, epilepsy gets cured by the time the baby is say around ten or 12 months old. But my son turned one year old and seizures continued. The medicine combination was changed by the doctor but even that did not help. We also met multiple doctors, different child specialists, tried all kinds of medicine but nothing helped. You would be surprised to know that we consulted nearly 20 different doctors and specialists. Nearly three years passed during this time and my son turned four years old.

Speaker: Mr. Vivek

How did you and your wife manage your son?

Speaker: Mr. Manoj

My wife has professional qualifications. She had planned to work once our son would have turned one or two years old. But we later dropped that plan. She had to take care of our son continuously. With regards to my son we were facing multiple challenges. Since his seizures were not stopping, it started impacting his cognitive and other developmental parameters. A normal child starts walking around one or one and a half years. My son started walking around three years of age. His speech did not develop till he turned five years. He walked barely for a minute. Overall his development was equivalent to a child which is half of his age.It was a very difficult time for our family. We were hoping continuously for our son to get better.

Speaker: Mr. Vivek

Did you meet a Neurosurgeon during this time to explore surgical options?

Speaker: Mr. Manoj

Yes, we met a top neurosurgeon in Mumbai when my son was around four years of age. He was considered among the best in epilepsy treatment. After conducting MRI and EEG investigations, he recommended surgery. He told us that out of ten children, seven to eight children recover from medicine. For the remaining two or three children, surgery is required. Hearing that we were nearly ready for the surgical option. But then the doctor added that it will be a radical brain surgery as he might need to disconnect parts of the brain. And in such cases, some part of the body function will be impacted. He also added that though surgery is the only option we can go for it now or later after a few years. This created a dilemma for us. We had heard about many cases where epilepsy got cured as age progressed when supported by medicine. We thought the same could happen with our child and we might not need surgery. We did not go for surgery because of three reasons: (1) With age it might go away (2) Medicine will help (3) Surgeon did not sound that convincing. Somehow we wanted to avoid surgery, more so a radical brain surgery, and these reasons gave us the supporting logic to wait more. But we were both wrong and unfortunate. My son turned eight but continued to suffer from epilepsy.

Speaker: Mr. Vivek

Can you share how this impacted the life of your family? Till four years of age, your son was still young but another four years passed and he did not get well. It must be a challenging period for you and your wife?

Speaker: Mr. Manoj

Yes, it was a very challenging time for us. Whenever we used to go outside to say a city mall or travel people would look at my son. They would enquire whether he is handicapped. Such questions used to hurt us. But we cared a lot about our child. We accepted him. I thought that I needed to find the best possible way out for my son. I had always believed that if there is a problem, there is a solution to it. So I always tried to find out what is the solution to my childs’ epilepsy problem and how can I make him as normal as other children. Many people told us that your kid is special. But then some told us that as parents we are special. It takes five to seven times extra effort to take care and nurture such a child. I am really grateful to my wife. She managed and supported my son a lot. It’s been ten years now but she hasn’t left the side of my son for even a day. My days go in the office but she is there the whole day at his side. More than me, it is she who helped us go through these difficult times. But being a mother she is also very emotional for our son. She is worried about his future. We have stopped going outside to public places and family events. We prefer to stay at home. When we used to go out with our child earlier, he wouldn’t sit in one place. He will run and throw things. Which was at times inconvenient in a social setting. So we cannot go out with him and we cannot go without him. As a result we don’t have a social life.Our biggest worry was that we can take care of our child now. But as parents we won’t live as long as he would. So what would happen to our child after us?

Speaker: Mr. Vivek

How did you make up your mind regarding surgery in eighth year?

Speaker: Mr. Manoj

By the time my son turned eight, we had tried all the possible options. We even tried a ketogenic diet and Ayurvedic options. Nothing helped. It enabled me to come to the conclusion that apart from epilepsy surgery we have no other option left. With the help of my friend, I got a reference to a Neurosurgeon who is an epilepsy specialist. This neurosurgeon is part of a hospital which is well equipped for epilepsy surgeries and is supported by a team of child neurologists, radiologists etc. It is one of the best treatment units for epilepsy surgeries in India. The team ran EEG, PET Scan and MRI tests on my son. Then they evaluated and analyzed his case and recommended functional hemispherectomy. Neurosurgeon also explained to me the potential positive and negative outcomes of the surgery very transparently.

As explained, there were two possible outcomes of the surgery. The positive outcome could be that the child will be epilepsy free and he will also be medicine free. The negative outcome could be that being a radical brain surgery, called functional Hemispherectomy, where his left damaged brain would be disconnected, the right side of my sons’ body could weaken, particularly his right hand, right leg and right eye. Another area of concern was the impact on speech. Generally left brain surgery can lead to deficit in speech. The final decision was then left to us.

Speaker: Mr. Vivek

How did you reach the final decision?

Speaker: Mr. Manoj

I was mostly mentally prepared after trying all options for eight years. But as we know brain surgery has around one percent risk to life. So my wife was still anxious and worried about surgery. She was not sure epilepsy would get cured after Hemispherectomy surgery. To further convince ourselves we reached out to a few patients who were treated by this centre. The feedback which we received from these patients was very encouraging. It helped resolve our dilemma and boosted our confidence to go for the surgery. To sum it up three things helped us decide to go for surgery: (1) We had tried all available options except surgery (2) The transparency and capability of the Neurosurgeon and specialized facility for epilepsy surgery and (3) Positive feedback from other parents. As you know we trust doctors but when other parents corroborate the same, it really helps.

Speaker: Mr. Vivek

Can you share about the period during and after the surgery?

Speaker: Mr. Manoj

The moment medical staff started taking my son to the Operation theatre, my wife started crying. I hardly cry but that day, I also cried. We were anxious and uncertain about the outcome. We hoped that everything would turn out to be good but still it was a period of extreme stress and anxiety. The surgery lasted for nearly seven to eight hours. I feel those seven to eight hours were the most difficult period of my life.

Once the surgery was completed, the surgeon informed us that it is successful as per their analysis. We were relieved to hear those words. I sent one of my acquaintances to get sweets for the medical team. Post surgery he was taken to the Intensive Care Unit (ICU) where he was kept for two days. By the third day my son was ok and there was no impact on his speech compared to what it was before the surgery. That was a huge relief for all of us. But his right hand and right leg were paralyzed. The Neurosurgeon told us that his right limbs would recover to some extent but it will require physiotherapy and occupational therapy.

After discharge we identified a good physiotherapist and started daily physiotherapy for my son. His epilepsy stopped immediately after the surgery and then over a period of time he became medicine free. Before surgery he used to take five or six medicines per day but after surgery over a period he became medicine free also. We are thankful that the positive outcomes of surgery are realized.

Speaker: Mr. Vivek

It is now nearly one and half years since epilepsy. It is really great that the outcome of surgery is positive. But then there was an impact on the functionality of right limbs. Did physiotherapy help?

Speaker: Mr. Manoj

After surgery his right leg and right hand were totally paralyzed. I was very disturbed about how to improve that. But physiotherapy really helped. His right leg is now seventy percent functional. Right hand has recovered around fifty percent. The shoulder and elbow movement has returned but wrist control and movement is not recovered yet. Surgeon had told us that gross movements will come back but recovery of fine movements, like writing from a pen, would be low probability.

Speaker: Mr. Vivek

How is the improvement in speech and cognition of your son?

Speaker: Mr. Manoj

Good thing is that his speech has improved by nearly fifteen to twenty percent. His cognition has also shown improvement. When we plan to go out he expresses his desire to accompany us. Now my next target is to improve him as much as possible over the next two years. He still cannot go to school but I am trying to improve him as much as possible. At least to the level where he can go and play a little bit with other children and talk to them about basic things. I am also researching some equipment/support for improving the wrist movement. I have joined a Facebook group where there is knowledge sharing about such equipment between parents. I am actively researching treatment (wrist fusion or tendon transfer) or methods which can improve the fine motor skills of the hand. I am talking to a few other doctors. They have told me that his age is now nearly ten years. Till fourteen years there is growth in the bones of children. If any wrist related operation is done now, his bone growth in that area might be impacted. So let him grow till fourteen years, then we will consider him for wrist related operations. That’s why I believe there is a solution to every problem. I had joined an epilepsy related parents group. There, post an epilepsy surgery, many parents don’t pursue further improvement in their children. But I believe we should not stop after surgery. We have moved past the epilepsy challenge. Next step is to work to improve his cognition and movement. He will never be hundred percent normal, but if he improves to the level of eighty or ninety percent, he can live independently. I know my child is not as good as other children of his age. But I am sure there must be something good for him in his later life. We are not giving up.

Speaker: Mr. Vivek

When you look back over the whole period and your experience, what advice will you give to parents?

Speaker: Mr. Manoj

I will suggest that in case of epilepsy one should try medicine based treatment first. Check whether medicine combinations are working. But if medicine is not showing results, even after changing them a few times, take opinion of a Neurosurgeon. If required, take a second opinion. But if all opinions are suggesting that surgery is the best option, go for it. Epilepsy causes cognitive regression with age. So the decision to go for surgery should not be delayed a lot. So by doing a surgery at a later age, you will lose cognitive development time. Neuroplasticity is there in the early age. But most importantly, I will say, never give up. You as a parent and your child are special.

Speaker: Mr. Vivek

Dear listeners. This was the story of Manoj and his family’s fight with Epilepsy. We learned a few very important lessons from Manoj today. First, try a medicine based approach but do not be afraid of surgery that you end up delaying it. Neuroplasticity, or the ability of the brain to regenerate impacted capabilities after surgery, is highest in early childhood. Second, take multiple doctor opinions and then make your decision. Third, talk to a few other patients and learn from their experience. And finally, never give up. Every problem has a solution.

In the end, I would request you all to share this talk with your contacts and spread awareness about epilepsy. Please subscribe to www.drstories.com to listen to our future talks. Cheers, till we meet next time.

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