This post is the story of my daughter’s diagnosis, which we received when she was 4 years and 2 months old. Till then we were clueless. My daughter Peu, has CDKL5 disorder, a rare genetic disorder marked by early onset of seizures.
The objective of writing the story is to reiterate my belief that when you want something very badly, or have your goals clear in your mind, the whole world around you comes together and helps you to make it happen. In this story, I describe how we could meet our goals with every one’s kind support. The key takeaway from this post is ‘set a goal, do not get stressed out about the goal , think about it and work on it consistently. It has to happen’.
It was over three years, we had been trying to control Peu’s seizures. That was the only focus for us and all doctors we met in India. We thought, we could kick in some development in her if and only if her seizures stopped. We relentlessly strove to achieve freedom from seizures. No medicine seemed to help and as a last resort, we started ketogenic diet continued it, hoping one day it would stop her seizures. Amidst this chaos, we were intrigued by not being able to solve the mystery: “why does she have the seizures”. All possible tests ( metabolic screening, skin biopsy, MRI and hundreds of other blood tests) available in India, came back normal. There were many speculations and the reasons which seemed plausible were her dipping heart beat during labor and any trauma resulting from the the umbilical cord wrapped three times around her neck. However none of these were conclusive and most doctors agreed that the consequence could not be so devastating. We desperately wanted an answer but un-willingly accepted the diagnosis of ‘Cryptogenic Infantile Spasm’ and assumed the cause will remain a mystery for ever.
Her EEGs never showed any specific focus, yet I wrote to Dr Harry Chugani, who specializes in surgery for Infantile Spasm cases, asking for help. He immediately responded and asked us to do a PET scan. My heart skips a beat each time I see the video. The PET scan report, clearly read ‘ hypometabolism in the left temporal lobe’, which meant there could be one specific problem area in her brain . My hopes raised, maybe we could stop her seizures surgically and I imagined, how after surgery she would start doing things that we were desperate to see her do. I read a lot about pediatric neuro surgery. This was when Peu was 18 months old and I set a goal of vising Dr Harry Chugani in Detroit, USA. Seemed like next to impossible but there is no harm setting it in your mind. Meanwhile, Dr Chugani, recommended us to visit, ‘Sree Chitra Tirunal Institute for Medical Sciences and Technology (SCTIMST), Kerala, India’ for surgical evaluation. After two days of EEG monitoring, the doctors at Sri Chitra Institute concluded that she was not a surgery case at present. All my imaginary scenes fell flat. We got back to our efforts to control her seizures.
When Peu was around 2.5 years in October 2012, I read about the Anat Baniel Method (ABM) from the Infantile Spasm Yahoo group,and how it was very effective for special needs children and that it was based on the principles of brain plasticity. I immediately bought her book ‘ Kids Beyond Limits ‘ and got her DVD ‘Children With Special Needs ‘ . My dream to apply ABM on Peu got recorded in my brain. Her book fascinated me. I tried to follow her suggestions from the book. Meanwhile I worked actively to figure out if an ABM practitioner could travel to India. We found a practitioner, Robin Peter Zander who willingly agreed to travel to India and see a small group of children. He was flexible and ever willing to make this trip happen. ABM was unheard in India and it is expensive. Convincing other parents for an intensive ABM program was a tough task, due to the huge cost involved, and I gradually stopped working on it aggressively. However my wish to apply ABM on Peu grew stronger.
I joined facebook groups of parents whose children received ABM therapy. They are informative and the discussions are useful. When I had posted a query in one such group, regarding Cortical Visual Impairment (CVI) . Michelle Turner messaged me with various techniques and shared with me several videos for free. Michelle is a movement integration specialist and educator. I saw an instant effect on applying the techniques shown in her videos. Her detailed videos are extremely useful. The advantage was that her sessions are not as expensive as ABM and she was always available to answer your queries. Thoughts about having her travel to India came up in my mind and I shared the idea with other parents in India. Incidentally, she has started making trips to India and her second visit is scheduled in August 2015.
In my response to a message to Anat Baniel, she wrote that the method would work best if her seizures are controlled. In September 2013, for the first time in three years of Peu’s life, her seizures stopped. This was the time when we had completely weaned her off all medicines and she was on ketogenic diet, for past one year. I realized it was the time to take action and apply ABM on Peu. This was when my goal became concrete and things started falling in place. We set a goal to move to US so that we could provide ABM sessions on Peu as soon as practically possible.
First and foremost, we needed a visa to move to USA and that would be possible if one of us got a job in USA. Peu’s father started his job search. It seemed like a coincidence or maybe because our goal had to be met. My husband got a job opportunity in San Antonio, Texas. It seemed our first pre-requisite was met. There were a series of tough interviews with his potential employer and Peu’s dad seamlessly cleared them and he had an offer to join in January 2014.
I found that San Antonio had an ABM practitioner, a physiotherapist named Cyndi Manes. I was overjoyed. She immediately responded to my email and helped me by hand holding me with the steps that needed to be completed beforehand, so that we could see her as soon as possible, after reaching San Antonio. She being a physiotherapist (PT) was an icing on the cake because medical insurance in US does not cover ABM sessions but it does cover PT sessions.
My husband had to travel earlier than us so that he could make all suitable arrangements before Peu landed in San Antonio. The next challenge was me travelling with Peu on a 30 hours flight. My brother, Dipangkar volunteered to come down to India and accompany me and Peu to San Antonio, while Peu’s father got things ready for us there. This issue also seemed to have got resolved.
My brother, mother and father in law (Bhowmik family), most willingly took up the responsibility of looking after our house and set up in Bangalore, India.
Our family friend, the Bharadwajs (Nishita and Shankar) unconditionally accepted to take care of my ailing father while I was away in another country for my daughter.
My school mate and dear friend Shyamlee, wholeheartedly agreed to visit and give company to my father.
My office colleagues and manager had always supported me for the last 3 years while I worked from home and then supported my decision to quit my job before traveling.
I conclude the first part of this post reinforcing my belief that when I have set a goal everyone around me will come together and support my efforts to make it happen.
In the second part of this post, I will describe how our goal of seeing some developments in Peu was met and how the mystery of her uncontrollable seizures was solved.