Diagnosed as MR, CP, severely quadriplegic, symptomatic generalized epilepsy secondary to prenatal encephalopathy, hyperbilirubinemia post birth, anoxic damage at age 2 weeks secondary to aspiration pneumonia. Her MRI suggested old insult (?Metabolic, ?Ischemic) Possibly during the perinatal period Tanvi started treatment with Dr. Vasa at age 16 years.
Tanvi Masurkar before Vasa Concept
Over a period of 16 years of her life, Tanvi had undergone rigorous physiotherapy, speech therapy, Botox to both upper and lower limbs at age 14 over span of 2 years; the mother got concerned when Tanvi could not walk for 6 months after administering Botox. She was made to walk wearing AFOs. Her feet were crooked shaped with severe ankle tightness; she had a very crooked toe walk with adductor tightness, kissing knees and was unable to walk without support. She had upper limb involuntary movements. She had bilateral hamstring spasticity, bilateral ankle tightness, right greater than left hind foot valgus+. The heels were not touching ground while walking even with use of AFOs. Tanvi started treatment in August 2012 with Dr. Vasa at age 16.
Following are the observations made by Tanvi’s parents within a time span of less than 8 months of treatment with VASA CONCEPT.
Before - After Video
Videos - After Vasa Concept (playlist)
Tanvi started treatment under Dr. Vasa on 19th August 2012 at age 16 yrs, when I had given up all hopes as every other doctor that I consulted told me she is too grown up and I should accept her condition of quadriplegic cerebral palsy; she is severely brain damaged.
- Within the first two weeks of starting treatment with Dr. Vasa, Tanvi was able to take weight on her hands in cobra posture and manage herself on her own in cobra posture with little external support at elbow to keep it extended by me. By doing so, she was able to keep her trunk lifted with arm support and she could have good visibility of the surroundings.
- She was so unstable always and used to shake her head, neck, and arms involuntarily. Tanvi’s neck always rotated to left side so much that she hardly could focus on anything without shaking and therefore she was not able to get the picture of what she saw enough long to know fully. We all know that there has to be eye-object contact for sufficient time in order to form an image on the retina; only then we can visualize any object.
- She soon became stable in dog posture and stopped falling sideways from Dog posture. This made me very happy; she kept her own balance in Dog posture for few seconds. Shaking reduced. No other doctor ever thought of doing anything to correct those involuntary movements or give any medicine to correct the condition. The therapists had already told me that Tanvi will have to manage with those involuntary movements for rest of the lifetime. I was so much worried because these movements looked so odd in my growing daughter besides hitting us if we came on her way.
- She has also now begun crawling forward on her knees from dog posture.
- She is still not opening her left palm completely. Her wrist still remains hooked.
- Tanvi is sitting more erect now. By doing dog to cobra her arms and trunk muscles have become stronger.
- She can now maintain in Namaz posture for 3 minutes without any support.
- From dog to cobra posture she is trying to take her legs back in extension, but not able to maintain weight on hands; we have to externally support her elbows in extension to remain straight manually.
- She is able to maintain dog posture for 2 minutes now.
- On 25th August 2012, suddenly at the center, she walked 3 -4 steps independently for the first time in her life without any splints, without any kind of external support, without any one of us holding her to walk. This was amazing to see. I got so confident now that my child is going to only progress hereafter. There is going to be no deterioration in her health any more.
- She is attempting to do Namaaz to knee stand exercise and reaching for toys (15 times).
- She jumps on the trampoline with me supporting (20 jumpsat a time).This is helping her with her foot getting in shape; she has right greater than left hind foot valgus+.
- By the end of September month, Tanvi had begun doing exercises for 3 hours per day (though it is less as compared to other children working with Dr. Vasa, it is much more as compared to the kind of passive exercises she had been doing till date with other therapists). In between she also does sit ups and hand extension by herself.
- In cobra posture, with her hands supported she is stretching her legs backward on her own now, which she was not able to do before.
- After 4 weeks of exercises, on the trampoline now she is able to jump holding the rod; though the jump is not too high. It was impossible for us to imagine her jumping at a spot and at the same time enjoying doing the same. She had always been forced to walk with support and forced to stand with support.
- Because of the adductor muscles tightness and hip flexion contracture and internal hip rotation contracture her knees used to touch each other while we forced to stand and walk. Now by doing dog to cobra, sit to stand, jumping on trampoline, etc, her adductor tightness has reduced and hitting of both knees to one another is not seen any longer.
- She is trying to move forward on her knees.
- Her sleep has improved.
- There were lot of skin impurities in the form of dark patches and skin eruptions on Tanvi’s back and legs; with improved blood circulation, this is getting cleared too.
- In the month of October, I could see that her elbows which would always remain bent and her arms constantly involved in doing involuntary movements have improved to a greater extent with all the exercises which were designed to keep her hands engaged in supporting the various postures given.
- Tanvi’s body which was very stiff earlier has become reasonably flexible now. Her trunk appears straighter now; earlier her trunk would remain bent with a C-shape on sitting.
- She seems more happy and relaxed now.
- Now she is able to maintain cobra posture for 5 minutes with little support at the elbow.
- She is able to wear bangle in her left hand by herself which she was not able to do earlier at all. I was shocked to see her do this. She is becoming conscious about her beauty which is quite age-appropriate.
- Now she also tries to open tap with right hand.
- Her response to any external stimulus is much quick than ever before.
- Now she is able to sit cross leg and have dinner. Earlier she was not able to sit in this posture as there was lot of stiffness at the knee. I feel for my child so bad in thinking that how much she suffered from stiffness and how painful it must have been for her to bear the stretch that previous therapists did to her which is why the moment I used to dress up Tanvi to take to the therapists, she would begin crying. As I am a working mother, I always depended on the therapists for her treatment.
- Now she is crawling faster.
- For the first time in her life, she was able to eat a banana with her hand; earlier we had to feed her. As involuntary movement is reducing, her hand-to-mouth coordination as well as hand movement has improved remarkably.
- Time limit for hanging on the rod has increased for both the hands; previously she was not using her left hand to hang on the rod.
- Previously she was keeping her left hand bent all the time, now she is able to keep it straight for much longer time even when is she is not doing anything. This change we have observed after starting with the exercise of loading left hand while she is lying sideways on the ball.
- Now she is able to sit much longer, at least for 5 minutes continuously in the Namaaz posture.
In the month of November, Tanvi managed to keep her leftarm straight while in dog posture. Though the hands get fisted frequently, she is trying to keep them open.
- In standing position, the left knee is getting internally rotated, but the degree of rotation has decreased and knees no longer hit one another.
- Our family members, who saw her after long time, commented that she looks fresh, happy and better than before and since her involuntary hand movements have decreased a lot, she looks more stable and calm in appearance. Everybody notices her improved complexion now; this is because of her improved blood circulation. Outside people also feel that Tanvi has become very vocal now; previously she was a very quiet person, not speaking at all. Now that she understands about beauty and presentation, she demands attention from everyone around.
- In so many years of her various types of treatments, I never noticed these many number of changes in such short duration.
- Tanvi’s babbling has also increased a lot. She tries to speak new words.
- If I ask her any question, she tries to recollect things before answering.
- Now she has started getting tickling sensation in her feet when she is sitting in one posture for long time.
- Now she also manages few times to bend from the chair and to stand. Not only this, she also manages to throw the ball in standing position.
- Now she tries to do cobra on her own.
- She has realized she looks good when standing erect. Crooked bent posture is a thing of the past for her.
- She is insisting on standing in front of mirror with the walker.
- Her appetite has increased and also the urine output has increased. Constipation is no more an issue; her constipation is gradually decreasing.
- In the last week of November, we focused more on cobra and sit-to- stand. Cobra she is able to maintain for quite long time. In sit-to-stand from the chair some improvement is seen as she is able to get up when trunk is kept bent forward.
- Now she can keep her feet flat on ground when standing with ball support, no more heels going up in standing.
- Tanvi can now stand straight for at least 10 minutes with little support at her pelvis.
- Tanvi vomited a hell of a lot one morning and it was all highly sticky like thick gum with foul smell, I got worried and called Trupti and to my surprise Trupti reacted very happily saying this is good, now Tanvi will see some more light in her life, there will be bigger physical and behavioral change in her and asked me not give her drug to stop vomits, rather make sure she gets more episodes of vomiting so as to get to new and higher development. This, to me was a bit scary but I followed their advice and tried to remain calm hoping for the best. Tanvi was normal after vomiting and slept well, ate well and was cheerful as well.
- One morning after doing exercise with Tanvi, I had left her alone on the floor to do crawling. Suddenly she put her hands on the bed and came into cobra posture and was also trying to get into camel and hanuman posture.
- I make her sit on chair and put some toys down on floor. Tanvi is able to get up from chair, extends her hands actively and picks up the things from ground and again sits in the chair. From this I know that her body which was very spastic before has become quite flexible now. While doing this her knees are quite apart.
- Tanvi is able to speak few words like Mama, Aaba, Uncle very clearly and with confidence. Even some of her friends can understand her speech to some extent. She also tries to communicate with gestures.
- Her interest and curiosity in knowing the surroundings has increased. She constantly keeps asking me questions about the surroundings. Earlier as if she was not part of all of us, her existence was simply for us to take care of her and she would lay passive and disinterested and drowsy and not one among us. It is an incredible change that now she is part of all what is going on in the home.
- Sleep is quite improved as compared to before. Now she can sleep peacefully for 5-6 days in a week, sleep still bothers her 1-2 days a week.
- Her tendency to pull her own hair has reduced to a great extent now.
- Now, the duration of sitting in Buddha posture has increased and she is able to sit at least for half-an-hour.
- Now we are in 2013 January, Tanvi appears more erect and in proper posture. Her back doesn’t appear scoliotic C-curved now.
- Now she tries to attempt exercises like cobra, sit-to-stand on her own.
- Whenever I am dressing her I get her into standing for a while, but now there is no more joining of knees as was seen before.
- Now, she is able to stand straight with one hand support.
- Now she tries to get into camel posture on her own.
- While standing and bending, she is able to keep her feet flat on the floor; now her tendency of standing and walking on toes has decreased to great extent.
- Now her memory has improved. For instance, when I return home from work and ask her about daily events, she would never answer without prompting; now she is able to describe her daily activities by herself.
- Namaaz to knee standing on the ball has improved and also her jumping on trampoline. Now she jumps on her own; we need not hold her hand, we just stand by her side to safeguard her.
- In the month of February, I noticed her questioning has increased now, like why some children are kept in hostel; how did you prepare this food; questions related to television shows.
- She is very keen to stand on her own from the chair.
- Now days she wants to do cobra, sit to stand on the ball without any support.
- She is trying on her own to get into cobra posture. She stops me from supporting her hand.
- Now she has become very interested in cooking and wants me to try new recipes and when I am cooking she sits and watches. She was trying to roll a roti the other day.
- In the month of February, I noticed that she is now able to sit in Buddha posture for more than an hour.
- She used to frequently get skin eruptions; this has almost stopped now without any medicines. Even her back has become clear of the dark patches.
- Her involuntary hand movements have totally stopped now. Last week in a restaurant she was sitting completely stable and I had no issues feeding her with spoon. She voluntarily brings her mouth forward while feeding. I had never even dreamt about stopping her involuntary hand movements. Dr. Vasa designed such postures and exercises for Tanvi that her hands got engaged into maintaining those postures and the dyskinetic movement got diverted to co-contraction to maintain dog and cobra posture.
- Her observation and choices about the food taste has improved. Now she tells me if the food is bitter or salty in taste; previously she never could make out the difference in taste.
- In the month of March, I see that during knee walking she is keeping both hands down by her side; previously her left hand used to always remain bent on to the chest.
- In cobra posture, her pelvis touches the floor without any external pressure.
- Now she even tries to get into camel posture from standing posture by putting her hands down on floor.
- Now when she is sleeping at least for one to two hours, she is keeping her hands and leg straight; previously while sleeping her posture would be like that of a baby in the mother’s womb, hands bent, knees bent and brought towards abdomen.
- Now she can stand for good amount of time with support of ball and that too with both feet flat, knees straight and not internally rotated; previously she used to stand on her toes with knees internally rotated and bent inwards.
- Her water intake has increased; previously she used to drink only 2 glasses of water a day, now she drinks 4 glasses of water.
- I am looking forwards to more development in my Tanvi.
Tanvi also is able to do sit to stand with little support at knees. Her wrist contracture has reduced a lot. Her skin has become very healthy. Squint of eyes looks reduced. Stiffness all over body has reduced. Most importantly, she had involuntary movement of her hands and head neck, that has reduced to a greater extent. She used to toe walk previously and that too with support. One time in January, she independently walked few steps at our center. Her heels can now touch the ground at least; though passively. She joined us in August 2012.
Tanvi Masurkar 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.
|New Horizon (Dr. Dalwai)||6 years||Physiotherapy & Speech therapy|
|Dr. AshaChitnis||3 years||Physiotherapy|
|Dr.Priti Gala||9 years – one session per week||Physiotherapy|
|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
- 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.
- Became more inquisitive, started asking questions.
- Memory has improved.
- Focusing on activity has increased.
- She now understands tastes of different foods, sour, bitter, etc.
- Babbling has increased, even people other than the family members are able to comprehend few words she is speaking.
- 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.