Tanvi Masurkar
Tanvi Masurkar

Tanvi's History

Tanvi was born on 6th April 1996, a full term normal delivery.  She cried after birth.  From 6 p.m. onwards she started crying which the gynecologist concluded is normal.  However, my mother-in-law who came to see her brought to my notice that the child's skin is looking yellow and her crying also had not stopped.  We immediately called the doctor on duty to check but he also assured us everything is normal.

Second day went normal, but at night she stopped taking any feeds and was having high temperature.  The gynecologist came for visit; she noticed the yellow color of the child's skin and ordered blood test immediately. Tanvi was also started on phototherapy. The blood report indicated high levels of bilirubin in the blood and immediate blood transfer was advised.  Tanvi was shifted to Nanavati for the blood transfer.  First blood transfer was ordered on 8th April 1996.  Second blood transfer done on 10th April 1996 and a third blood transfer on 13th April and discharged was planned for 15th April.

On 14th April, 1996, after being bottle fed, she vomited and aspirated.  The senior pediatrician informed us that she is very critical and the chances of her survival are very low; she was shifted to ICU.  For next 3 days, the only information we got from the doctors was she is on ventilator as her lungs got damaged during aspiration. After one week's time the ventilator was removed, she was still in coma and was continuously getting seizures.  On 30th April 1996, she came out of coma and on 3rd May was discharged from the hospital.  Overall she was doing good except that she used to cry a lot.

 In July 1996, we took her to a pediatrician in Dombivali as she was suffering a lot from cough, cold and fever.  During check up after reading her history and asking few questions, he suspected her to have cerebral palsy and asked to keep an eye on her milestones.  In August 1996, Tanvi got a seizure and she was admitted to Nanavati Hospital again. The EEG report indicated a brain damage.  Dr. Joshi explained to us what cerebral palsy is and suggested to start with physiotherapy.

From September 1996 to May 1997, a therapist from Nanavati Hospital started taking sessions for thrice a week.  Her seizures continued but during this period she managed to begin to hold her neck and roll on one side.  Dr. Udani was consulted for her seizures; Valparin 5ml twice a day was started.

From June 1997 to December 2000 physiotherapy sessions were given under the guidance of Dr. Medhini in Hinduja Hospital. Improvement seen was that she was able to sit with support, neck control was better.   During this period, speech therapy was also started at Hinduja Hospital.

Following is the summary of treatments:

January -2001 – August 2012 ( Age of 6 years – 16 years)

In this period she was on regular physiotherapy, speech therapy and anticonvulsive medicines.

Doctor's  Name

Duration

Treatment

New Horizon (Dr. Dalwai)

6 years

Physiotherapy & Speech therapy

Dr. AshaChitnis

3 years

Physiotherapy

Dr.Priti Gala

9 years – one session per week

Physiotherapy

 

Neurologist Details:

Neurologist Name

Duration

Medication

Dr.Udani

7 years

Valparin 5ml twice a day

Dr. Anita Hegde

3 years

Frisium – 2.5 mg twice a day

Following additional treatments were also tried:

Doctor's Name 

Treatments

Duration of treatment

Remarks – Progress and Discontinuation

Dr. Gunwant Oswal

Homeopathic

For 6 months  at age 3 years

Sitting and standing with support improved. Seizures increased hence the medicine had to be stopped.

Ayushakti

Ayurveda

For 2.5 years at age 11 years

As 20 tablets were to be taken daily, Tanvi refused to take it after 2 years and would vomit out as soon as they were given. Also as she was not walking in right posture and her ankle joint were getting deformed. Hence the treatment was discontinued. After stopping the medication, her walking also stopped.

Dr.Johari

Botox (Twice for all four limbs).

Injections given over a  span of 2 years; at age 14years

No improvement seen after Botox.

Dr. PrafulVijaykar

Homeopathic

2 years

Her co-ordination had improved marginally, was now able to use her hand to hold the walker and stand erect.

Out of all the above mentioned therapies, nothing could work for my child; instead of improving, she went on further deteriorating.

During this period she started her schooling. She went to Punarvas for 7 years and for last 4 years has been with ADAPT. Her comprehension ability was always good in the school. Though she was not verbal, started recognizing words, reading small sentences, did basic mathematics.

August -2012: Age 16 years: Started treatment with Dr. Vasa

This month bought a major psychological change in our life. It was the first time I as a mother, was convinced that Tanvi can become independent.

Till the day I met Dr.Rajul Vasa, my focus was Tanvi should not deteriorate physically; I had accepted the bitter fact that my daughter will never become independent and had a constant fear of how she will be able to sustain later in life.

I read about the Vasa Concept in a Marathi newspaper in first week of August. As I had seen a major difference in one of Tanvi's classmate who was practicing Vasa Concept, I decided to meet Dr. Vasa.

On second Sunday of August 2012, I visited the center along with Tanvi. Dr. Rajul spoke to me for couple of minutes during which I asked her one question "Will it make a difference in Tanvi as she is now 16 years old?" Dr.Rajul's answer changed my entire mind set. Well, she said "It depends on how you work with Tanvi, I will guide."Dr. Vasa agreed to treat my child only if I was ready to follow all her instructions and was prepared to work with Tanvi myself instead of depending on anybody else. Some of her basic instructions were:  to stop unnecessary medications at once, not to force her to walk with AFOs or any support until she feels it is appropriate to do so, no wearing of splints at all.  Initially though I was hesitant to do so, seeing the progress of other children at the center I decided to go with Dr. Vasa's advice.When Dr. Rajul said 'You have to work on her', I knew that yes, I can bring some change in Tanvi as I will be personally handling her do those exercises.Never in 16 years I had heard this, it was always "We are the experts we will work on her, at home you can do some simple exercise" 

For past 16 years during all the sessions, I was handling over my daughter in the hands of therapists and just watching. I had tried all my very best to help my child so that at least she can be made independent but it is very painful to say that Tanvi kept deteriorating despite rigorous therapy that she went through on daily basis with physiotherapist and occupational therapists. She was so beautiful looking child and was not having stiffness and contracture when she was younger, but all these stiffness kept coming in despite treatment and therapists kept stretching her though painful and my child kept crying and I simply kept feeling pain seeing her crying to get contractures released with passive stretch. I asked doctors and therapist why is she getting so stiff when she gets treatment every single day and reply came that contractures happen to these children and they are commonly seen in all CP children, we can give Botox to reduce stiffness.

After completing the joining formalities from 7thAugust2012, Tanvi started practicing the Vasa Concept.

Within 7 months the following improvements were seen in Tanvi. Details of the progress are in the progress report file

Physical:

  • Started moving in the house in crawling position.
  • Her all four limbs have become very loose which has given her a confidence to do more activities on her own like trying to brush her teeth, holding the glass, voluntary becoming co-operative while dressing.
  • She even walked once in the month of January 2013, that too without any external aid or any kind of support.
  • Sitting erect, cross-legged on floor and on table without back support.
  • Keeping her feet flat on the ground.
  • She can now wear bangles on her own.

Intellectual:

  • Became more inquisitive, started asking questions.
  • Memory has improved.
  • Focusing on activity has increased.
  • She now understands tastes of different foods, sour, bitter, etc.

Speech:

  • Babbling has increased, even people other than the family members are able to comprehend few words she is speaking.

General Health:

  • Tanvi is more lively and energetic as all medicines have been stopped.
  • Constipation has reduced.
  • Color of the skin has improved.
  • I would genuinely like to thank Dr. Rajul for changing the parent's views, giving them positive strength and attitude to work and helping the kids in improving their health and become independent.

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