Nishka Hosangady’s parents have been running from pillar to post to identify and treat their daughter’s crippling cognitive and physical disability. Finally, after visiting a legion of doctors, therapists and healers, she was diagnosed with Benign Hereditary Chorea, a rare autosomal disorder. Read about the Hosangady’s agonizing and persistent battle to save their daughter.
When Nishka Hosangady started school at 3 years, she seemed perfectly normal. But, as she went into the primary section, her speed of working slowed down. Her teachers said that she was slow in her writing and was not able to finish her work on time.
She was described as a quiet, well-behaved, loving child but she was not participating enough in her class. Her class was filled with very aggressive boys and girls and we believe she may have been subjected to some amount of teasing. We also noticed that her pencil grip was not proper and, much as we tried to make her hold the pencil correctly with her thumb and forefinger, she was using only 3 fingers. We also noticed that she was not able to hold a ball thrown at her. In her tennis classes she was not able to hit the ball with her racquet at all. However, her social skills seemed OK and she had friends mainly in the building complex. She was not particularly close to her school mates.
Remedial Classes
When she turned 7, we took her to Umeed – Child Development Centre where founder and medical director Dr Vibha Krishnamurthy subjected her to various tests and found that she had soft neurological issues. She was not able to hop on one leg and had learning disabilities specifically in grasping and comprehending. Dr Vibha suggested some remedial classes.
However, her challenges in writing persisted and in school there was no appreciable improvement. In fact, with higher classes she found it more difficult to cope. She did not speak much, even though her speech was clear.
A year later we took her for cranio sacral therapy (CST) but that did not suit her at all. In fact, her problems seemed to worsen all of a sudden. She found it difficult to feed herself. She complained of tremors in her right hand. Her speech deteriorated. She was unable to express herself in full sentences and found it difficult to get the words. A few months later, somebody recommended that we meet Dr Vrajesh Udani, pediatric neurologist. He asked for a brain MRI along with tests for Wilson’s disease, but everything was clear.
Although Nishka was taking remedial classes, she found it increasingly difficult to write or to keep pace with the class. She was undergoing Occupational Therapy (OT) and also swimming classes. None of these exercises really helped her. The remedial classes if anything increased her stress levels appreciably. The teacher advised that we shift Nishka to JBCN Special School for children with learning disability.
Challenges Continue
At JBCN, her difficulties continued. She had trouble writing and her right hand seemed to become worse gradually. Her speech also showed a continuing deterioration and was not as clear as before. She seemed to say sentences very fast without any break in her words. JBCN made no special allowances for her writing and this stressed her. Socially, she seemed to be progressing fine. She made a friend at JBCN and, even went for outstation picnics with her school and enjoyed the trip.
We took Nishka to every possible doctor suggested. We subjected her to innumerous tests, drugs, trial doses, even a brief session of Physical Therapy. But there was no appreciable effect on her. Nishka gradually withdrew from her social circle in the building and though she participated in a few games, she was unable to keep up with running and was not able to cycle at all. However, she had two close friends since childhood with whom she would play.
Institute for Advancement of Human Potential
At around this time, we met Douglas Doman, director of Institutes for Advancement of Human Potential (IAHP) in Mumbai and immediately enrolled for the basic program in September 2011.
For a year Nishka followed the program (physical therapy especially for neurological impairment) consisting of 8 patternings and 80 maskings per day, crawling and creeping and hanging. She also followed a strict diet that had no salt or sugar, no tomatoes, no citrus fruits, no wheat products due to gluten. She also followed the intellectual program and also had flashes of light into her eyes for a second at a time to improve her pupil movements. Her physiological condition seemed to improve, she put on some weight, improved her appetite and her digestive system. She gradually began to use her left hand for eating and other functions, though her right hand was hardly operational.
At IAHP, she made significant progress. She did the intellectual program very well during this period and began to read books on her own that had much superior content than what she read previously. Her cognition, logic and reasoning ability improved quite a lot. She also did respiratory patterning with a jacket at night that helped her breathe deeper to increase the flow of air into her lungs. In August, she got her eyes tested and had good visual convergence although her 3D vision was only 15%. Her gait also improved. However, her hand did not get better. She switched completely to using her left hand for eating and seldom used her right hand for anything. We also found that if she exerted herself physically for crawling or walking she experienced heart palpitations and got tired easily.
Finally, her ability to continue with the program decreased sharply and came to a stop in January 2013.
Change of School
After IAHP, we enrolled her in Gateway School of Mumbai which is a school for special kids in collaboration with the Gateway School of New York. Nishka’s right hand got worse. She was not able to hold anything with it, and was unable to write at all. Her speech was still fast and unclear. Again we tried our luck with doctors. We took her to a Kerala therapist that helped reduce the tightness on her back. The homeopathy treatment stopped her from choking on water which troubled her in the past. The parapsychologist put on herbal medications that sharpened her concentration. She was mentally more alert now. It is difficult to say if her main challenges with speech and motor skills of her right hand have gotten better or not. However, her gait has improved and she does not choke while drinking water as she used to earlier.
Now, Nishka, 17, is managing reasonably well in school and has fairly good grasping and retention power. She has no social life, has low self esteem but maintains her sense of humour and asks intelligent questions. She feels very frustrated that she is not able to speak clearly and gets annoyed when her parents cannot understand her. She spends most of her time at home on the iPad or watching TV. She is undergoing PT and OT in school but seems to have low energy and stamina.
Visiting More Doctors
We visited a neurologist who indicated that she may have some form of dystonia (neurological movement disorder) as she has an awkward walk and her neck and back would get stiff and weak. He recommended us to a movement disorder specialist who suggested we try Pacitane. But her symptoms only got worse and we stopped the drug half way. Now, it has been advised that we take Botox injections that are scheduled for the year end.
She has been having homeopathy since April 2014 containing Nat.mur and Tub.IM and also Baryta.Mur. Occasionally, she has also been given Cuprimet for about 15 days. Recently, she has also been given Bach flower remedies.
Nishka seems a lot brighter and more cheerful than before and her gait seems to have improved. However, her main challenges of contractions and rigidity in her right hand has not improved and her speech is still unclear. However, there have been times when her speech is clearer and she tries to talk much more than before.
Final Report
Dr. Charulata Sankhla who is an adult movement disorder specialist met me after a long time since she had first seen her and asked me to have her tested for a new dystonia panel from a lab in Bangalore called Medgenome. They took Nishka’s blood sample and after 3 months came out with the diagnosis called Benign Hereditary Chorea which is a rare autosomal disorder.
Read how she is doing 7 years later and how her family support worked.
