Pragati was diagnosed to be a case of encephalomalacia and gliosis seen involving bilateral posterior parieto-occipital lobes affecting the grey and white matter with sulcal accentuation, ex-vacuo enlargement of the posterior horns of the bilateral lateral ventricles (R>L); perinatal insult; Bilateral optic nerve atrophy.Pragati was 12 years old when she started with Vasa Therapy.
Pragati Pangekar before Vasa Concept
Pragati had delayed milestones. Parents said she is blind and cannot see.She had bilateral optic nerve atrophy and had total of 30% vision in both eyes. She had a tendency to tilt her neck towards left and hence she couldn’t maintain eye contact with any object. She had torsional dystonic neck rotation to the left andkept mouth open and drooled and had unsteady eyeballs. She needed support to walk and had h/o frequent falls
Following is an account of observation made by Pragati’s parents over the years while being treated with VASA CONCEPT
Before - After Video
Videos - After Vasa Concept (playlist)
Pragati Pangekar History
Pragati was born on 8th August 1997. Her weight at the time of birth was mere 1.25 k.g. It was advised to keep her in incubator, but the hospital did not have that facility. So she was shifted to Bhabha Hospital where she was kept for 10 days. She was given injection on the fifth day which costed Rs 135/-. Suddenly her voice got choked up. We could see her crying but could not hear the voice of her cry. Her voice was released after two days but when the same injection was repeated, her eyeballs rolled upwards. She was transferred to general ward after ten days. Misfortune followed her and there she turned blue and became stiff like a statue. When we called nurse, she immediately moved oxygen tube on her entire body. After some time she made some movements. She was discharged after 15 days. Though she was weak, she appeared to be otherwise normal to us and we did not suspect of anything untoward. When she was 3 months old, we noticed that she never gazed at us while we were around talking to her. Neither did she respond to the noise of the toy nor paid attention to it. Suspecting something abnormal we were worried.
It was by now confirmed in the fourth month that Pragati is visually impaired. We took her to the pediatrician for check up and advice. He perceived some problem related to brain and thus advised us to consult Brain specialist. He referred us to Dr. Udani in Hinduja Hospital.
We were a joint family and I was loaded with household responsibilities. My mother-in-law remained sick and three siblings of elder sister-in-law were also staying with us since they had lost their parents. As such I could not pay proper attention to Pragati as I remained busy in cooking, attending mother-in-law, her medicines, taking her to doctor for regular check up etc. and many top priorities. Under these circumstances our family doctor advised us to pay proper attention to Pragati and help her improving her health so that she would be able to walk.
Pragati’s father decided to take her to Dr. Udani. We took her to Dr. Udani when Pragati was 5 months old. He advised number of tests like ECG, EEG, MRI etc. He advised that she was born normal but she developed some problem in the form of brain damage subsequently on 4th or 5th day. We were to face stark reality. She was put under his treatment for one year but with very little success. In the meanwhile, Pragati’s father lost his job as he had had to take lots of leave during Pragati’s treatment. There was no end to our woes. It was now extremely difficult to meet two ends, lest expenses on Pragati’s treatment.
We met doctor and explained him the situation seeking some guidance from him as to what will be the course of action in her case and how far it will be successful. Non sensitive to our pathetic condition, doctor just said he could not say anything about success of the treatment. It was impossible for us to continue treatment due to dirth of funds and we decided to stop it in absence of profound assurance.
Helpless, pragati’s father sent me to my mother in hope of some remedy. My mother made regular massage to Pragati and took special care to give her nutritional food like apple, carrot etc. It improved Pragati’s health to a large extent. She could sit within 2 to 3 months period and was able to stand when 1 year old. When Pragati was 1 ½ years old, she even started walking. She used to drag her left leg while walking. My brother brought three wheel baby walker for her. Pragati was enthusiastic to attempt walking with the help of baby walker. When she was 2 to 2 ½ years old she could utter some words like ‘Mummy, Papa, Kaka’. We used to be very sad seeing the slow progress in Pragati and together decided not to have second issue for 6 years, with the fear of having deformity in second issue. The neighbours and relatives started criticizing Pragati for no fault of us and declared us as unfortunate couple. Keeping trust on God, we took second chance and we were blessed with healthy baby boy. The same critics now showered praises on Pragati for bringing baby boy in the family.
I had to continue to stay with my mother because Pragati’s father’s earnings were not sustainable, brother-in-law had to bear the expenses and he used to torment my husband for that. We were frustrated as there seemed to be no way out. In the meanwhile my brother-in-law purchased some land in our village to plant mangoes and asked Pragati’s father to undertake responsibility of maintenance on monthly salary. We agreed to it because anyway doctor had advised us to take Pragati to some countryside near nature envisaging change in her. We took this opportunity thinking that I might take proper care for Pragati when being ourselves. Unfortunately brother-in- law also lost the job very soon putting an end to our monthly income and to make things more difficult for us.
When Pragati became 5 years old, we put her in nursery school. She liked school but was unable to see; she could not make much progress in reading and writing. Her memory was sharp and she had grasped figures 1 to 20 and nursey rhymes. It appeared that she is not 100% blind. We consulted Dr. Bhide at Ratnagiri in whose opinion she had 35% vision. He prescribed V Syranal syrup continuously for 2 years.
It was a series of misfortune with Pragati. When she was 8 years old, she started drooling and had hard stools. We took Dr. Shide’s treatment at Ratnagiri. When Pragati was 8 years old, we admitted her to normal school, where she was very regular, she attended classes from 10 to 5.
When she was 9 years old, she had epileptic fit in sleep and the entire track changed. Her one side hand and leg got paralyzed and her body became very loose. The fits repeated every two months. We were very sad for her but helpless to control the situation. We took her to ayurvedic doctor in Mumbai which continued for one year with not much results. When she was 10 years old we again took her to Dr. Shinde at Ratnagiri. After taking EEG, she was put on Valparin, which brought improvement in her condition. Now the frequency of her fits came at the interval of 6 months.
Dr. Patil came for check up in Pragati’s school. Looking at her condition he advised for MRI. Her body became loose and she was unable to hold her neck, it fell back off and on; her body shaked a lot.
MRI costs Rs 7000/-, however we did not have any money. With the help of one sister working in Mumbai Hospital we got it done in Rs 2000/-. There was no money for consulting doctors with the reports. My sister-in-law called up to tell that she had talked to her cousin who is brain specialist and will not charge anything from us. We had reached the stage of near begging. We had to do all this at the cost of our self respect to save our child. With doctor’s advice medicines were started. Here too my sister bore the expenses of medicines and travel. Instead of improving, Pragati’s condition deteriorated. We again approached Dr. Shinde at Ratnagiri. We were very much worried and desperate to no avail.
In Ratnagiri Dr. Shinde sent us to Nachiket’s mother Vaishali Patwardhan. She not only helped and counseled us but referred us to Dr. Rajul Vasa.
At this juncture, Pragati’s condition was very tragic. She had lost all confidence which she showed while she was going to school. She used to get scared of any sound like horn. Ever since she started getting epileptic attacks, her looks are not normal. We felt bad that people look at her in strange way. She somehow managed on her home while at home but she could not walk few steps on the road without our assistance. She could have food on her own and could manage her daily routine on her own but now it was all gone.
With the exercises suggested by Rajul madam on 8th September 2009, Pragati’s condition improved a lot within a month’s time. She could walk without assistance and her vision also improved. She could see small things. She used to fall very often earlier but now it reduced drastically to once or twice in a day. Unfortunately there was a mishap at her school. Due to heavy rains, school wall collapsed and there were two fatalities. Pragati was a witness to it and she literally got a shock. Her progress reversed back to square one. The fear of unknown haunted her and she almost lost control over her body and actions. Her schooling stopped.
Pragati got periods when she was 13 years old. These 3 days used to be very difficult. She used to be at the peak of her cantankerous attitude; poor child, how much she suffered! And how much more was in store for her!
She got epileptic attack on 26.10.2010 and her control over limbs deteriorated. Dr Rajul had asked us to stop the medicine. Under the fresh stroke of fits, we had to consult Dr. Shinde who advised us not to stop medicine at once but reduce the dose gradually. We were to see Rajul Madam on 6 Feb 2011. When we told her about reduced dose of medicine, she ordered us to stop giving her medicines altogether and also to stop fish in food and asked us to come after 2 months.
Since we had a full trust on Dr Rajul, we obeyed her instructions. However it was a difficult period. Pragati’s epileptic attacks persisted and frequency increased. We were frightened with the thought of what will happen to Pragati. But this was indeed a miracle. Inspite of getting fits at least once in a week, she can now hold her neck, walks confidently, her speech improved.
She resumed school since June 2011. Her vision had improved and so much so her grasping. Now when she gets fit, her body loosens, she waives her hands and legs and vomits after two hours. The very thought of fit is like a bomb scare to us.
During these days once she got fit within the span of 8 hours. We were very much afraid. We thought it must be due to nervousness and strain she gets as she continually sits for 7 hours in the school. We kept her away from school since 2nd Jan 2012. Since then till date she has not got any epileptic attack.
Under Dr. Rajul’s supervision, Pragati is doing very simple exercises like hopping in the bed, taking one step up and down in staircase, horse and cobra position, to raise neck in sleeping position, walk on one leg, walk with bent knees, jump and sit and get up etc.
With a great difficulty and after spending a lot of money beyond our capacity Pragati’s condition could improve to a very small extent only to relapse when she started getting fits. We felt as if there is no space for a financially poor person in this world. Dr. Rajul as if gave her and us too a glimpse of peaceful life. We don’t keep big expectations from life, but sometimes we feel pushed to the four walls. Now I feel that we were stricken not only by money poverty but by the poverty of true empathy on the part of doctors towards patients also.
Now Pragati had regained her earlier status. She can walk independently, Watches me while I do household work, plays with the girls of her age, reminds me if I forget something, watch TV programmes, plays with younger brother.
Life is slowly coming to near normal.
We owe debt to Dr Rajul which she had never raised!