MRI showed evidence of hypomyelination. The amount of myelin deposited in the paraventricular cerebral white matter, internal capsules and corpus callosum is less than expected for the given gestational age of 7 months. He began his treatment with Vasa Concept at age 2; he had severe hypotonia then.
Vivan Ghadiali before Vasa Concept
Vivan had a delayed developmental milestones and a very hypotonic body. He was unable to recognize and remember any family members. He would turn blank frequently. He was not able to sit or do any activity at age of 2.
Before joining Dr. Vasa, Vivan was a mold of clay with no muscle tone at all. There was no firm shape and structure to the body; the spine was scoliosed; he was not able to identify family members including parents, his neck would constantly keep moving, he had difficulty concentrating at any object, had no bowel and bladder control, frightening upward rolling of his eyeballs very often. He could sit independently for few seconds, but would fall frequently so had to be kept under observation.
Following is an account of observation made by Vivan’s parents over the years while being treated with VASA CONCEPT
Before - After Video
Videos - After Vasa Concept (playlist)
- He keeps on laughing for no reason.
- The tone of his back muscles is better.
- He moved about one foot ahead in lying down position with the help of his belles.
- Vivan’s trunk control is much better. His body has become more symmetrical.
- Now, he shouts a lot when he passes urine.
- Hand movement has improved a lot.
- Babbling is also increased.
- He gets down from the bean bag if legs are touching the floors.
- He responses a lot to his mother.
- He has started throwing balls.
- He tries to get up from sleeping position. At times, he succeeds.
- While sleeping in prone position, he comes in frog position. Then with the support of his hands he comes to sitting position (Namaz).
- He has active interaction with us as compared to no reactions from him during our efforts to work with him.
- Drooling is little less.
- He shouts a lot nowadays.
- When we are doing something on the floor like taking the meal, chopping vegetable, fruits or leafy vegetables, somebody has to hold him; otherwise he pulls everything & doesn’t allow us to work.
- He moves fast in sitting position.
- He gets down from the bean bag on his own. He comes on his elbow in supine position.
While sleeping in prone position, he comes in frog position. Then with the support of his hands he comes to sitting position (Namaz).
- The shape of his leg muscles are better.
- There is improvement in his understanding. At times he gives proper answer when asked something.
- We had been to Bangalore. We saw Zoo, Science Center, Botanical Garden, Palace, Mini Train etc. During the whole trip Vivan was very cheerful with two other children. There were no ill effects on his health during the entire tour. He now babbles a lot and moves forward by lifting the buttocks. He was extremely cheerful when we had been to a 3D show lasting about 20 minute and he was shouting a lot with cheers as if he was in a fairyland or in ecstasy.
- He has become stronger than earlier.
- He is doing Namaz to Kneeling very well, though he needs little support. He tries to maintain his body in kneeling position near window. He takes support on the window pane.
He was extremely cheerful when we had been to a 3D show lasting about 20 minute and he was shouting a lot with cheers as if he was in a fairyland or in ecstasy
- He tries to converse a lot as if he wants to say so many things. He speaks pappa, pappa continuously. At time he looks at Janak and says pappa.
- In sitting position, he moves very fast now. He changes his direction by moving his legs.
- He tries to lift his body from sleeping to sitting position. He succeeds in doing so with somebody’s support.
- His understanding seems improved.
- Now he comes on the elbow and tries to move ahead. His sitting posture is improved. At times he makes his back straight.
He tries to lift his body from sleeping to sitting position. He succeeds in doing so with somebody’s support.
- Nowadays he starts crying suddenly as if he is having some pain. Earlier he used to forget very quickly if something goes wrong. (If he got hurt or something). Now he keeps on crying for longer duration of time.
- He keeps on thinking something.
- He has also developed the sense of ill feeling and does a particular face as if he has felt ill and shows that he feels like crying.
- He is moving in the whole house in sitting position.
- He babbles a lot.
- Vivan’s back is more straight than earlier.
- His thigh muscles and knees look stronger and developed.
- He screams a lot and has become mischievous.
- He moves around everywhere in the house. He opens the drawers and removes the things out.
- He can manage his legs to come into kneeling position. He has done the same thing on the grill of our main door. Some kids were playing outside and vivan wanted to see them. He went near the door hold the grill and he stood on his knees for 3-4 seconds.
- Now he never allows his head to bang on the floor. At times we feel that he is falling but he has good control on his head.
- While doing activities, he picked up the correct thing for about 60-65%. His understanding is improved.
- He claps his hands when we ask him to do that.
- When we ask him to give a hi-five, he smiles and bangs his hand on our hand.
- In exercise, he doesn’t stand for longer duration of time.
- He sits down slowly during standing.
- We had been to play park. Once there Vivan took a ride on the horse, on the merry-go-round. He tried 2-3 different types of rides over there.
- In standing, at times he is locking his left leg. So we have to tap on his knees. Standing capacity is increased. At times we can leave him alone on the walker, but we have to keep checking his position of legs (that he is not locking the feet).
- It seems his understanding is improved a lot. Though he cannot express but we feel that he understands better.
- His arms and shoulder muscles are improved. He takes good weight on his hands. At times, he stays independently while taking weight on the hands.
- He tries to communicate also. He tries to talk by using different sounds.
His arms and shoulder muscles are improved. He takes good weight on his hands. At times, he stays independently while taking weight on the hands.
- He is able to stand in the corner with support.
- He is now able to stand erect with little support at the pelvis.
- From Hanuman posture he gets up to reach to the toys.
- He can stand for longer duration holding any tube or cloth which is hanging.
- While sitting, the shape of his back is straighter.
- From Namaaz posture, he tries to come on the knee with the support of the window.
- He is screaming loudly to attract attention of family members.
- He has become more focused. Whatever he wants he tries hard to reach to the object.
- He remains active all the time doing something or the other.
- His understanding has improved a lot. Now when I get ready and pick up my purse, he makes gestures to let me know that he too wants to come along.
- Now he quickly picks up the ball while bending.
- Now he concentrates and looks down into the tablet to see the nursery rhymes.
- In Buddha posture on ball, he is performing very well.
- His thigh muscles have improved.
- He does drool a lot when exercising, but when he is sitting idle or watching TV, he doesn’t drool anymore.
- His concentration has improved and he now watches educational CDs with more interest.
- His eye contact has improved.
- In dog to cobra posture, when we tickle him to come into dog posture, we can see action happening at his gluteal muscles.
- He is making loud noise when he is happy.
- Now he is babbling meaningful small words like pa-pa, pi-pi and he speaks clear.
- He now stands for fraction of seconds by himself when he is unaware that we are not holding him.
- Vivan is holding grill of the door and comes on his knees faster than earlier.
- Nowadays he looks more upwards and tries to maintain his posture erect; previously he used to constantly look down at the floor.
- Vivan is very cheerful at school.
- Vivan had sports day in his school in the month of February. He won 1st prize in two competitions. Competition was to throw the ball, blast the balloon and water play. We were so delighted. Until last year, he could not concentrate at anything, be it game or studies. This year he won a prize for us. We are very happy.
- His body looks more muscular now. All his muscles are developing.
- He is trying to maintain erect posture while sitting and standing.
Vivan Ghadiali History
In around 4th month he fell down from the bed. He cried for some time and then he was fine. We were afraid that something was not normal. We had observed dullness in him.
The child was found particularly slow and showing less or no responce to the jestures from friends and relatives at Ahmedabad, when there was a family event in December 2006. We primarily thought that it might be due to travelling stress, cough and cold.
We consulted doctor (paediatrician) at Ahmedabad where he first pointed out that ‘there is something abnormal in this child. His mile stones are delayed. He wrote Seizure disorder, early CP or Epileptic behavior in his prescription with query. We all were shoked.
We immediately rushed to Mumbai and contacted our Pe. Dr. in mumbai. He said not to worry, he is a normal child. When we said that we do not want to take things lightly and if any tests are required, we are ready to do, he suggested EEG and found that the report was normal. Dr. wanted to wait till another 1 month as he was still of the thought and confidence that the child is normal. However, we were paniked and we consulted ped. neurologist, who told us to do MRI test as he felt something wrong with the child.
After MRI we found that there is a problem of hypomyelination in the brain.
The following tests were carried out.
1) EEG at H.N. Hospital
2) Bera Report at Jaslok Hospital
3) MRI at Jankhria Clinic
4) CBC, T3T4 TSH level, Serum Calcium, B12 level at Dr. Rele Clinic
All other reports were normal except MRI.
Our new Ped. Dr. told us to go for Physiotheraphy under Dr. Medini Padhye at NDTC. The child started showing signs of responding to the treatment. He started reaching to the object in first visit only. His head holding was also improved. The regular sittings and treatment were carried out for 4-
5 days a week.
We consulted Dr. Anaita Hegde for the guidance. She suggested a number of tests. We carried out all of them as follows.
1) Liver function test
2) SGOT and SGPT
6) Calcium, Phosphorous, Alk. phosphatase
8) Urine test for metabolic disorder. (It was sent to Japan)
In the test, Lactate level in blood was little high (3.2). It was excreted through urine also. Rest of the reports were normal.
We did Physiotheraphy for 3-4 months, but progress was very slow. Even while he was 10 months old, he could not sit or respond/recognise the things and people around him. He was calling his Pappa when he was 7
month old. But now he uttered it occasionally. We found that sometimes he was cheerfull and sometimes non-reactive. Consistency was not there. Though he became mentally alert than earlier, he started responding towards the direction of sound. However, his reactions were not strong enough. He used to shake his head and roll-up the eyeballs often.
We were not happy with the growth. We felt that the time given for physiotherapy by the therapist was not sufficient. Meanwhile, at the instance of a friend, we went to H. N. Hospital for physiotherapy. The therapy in H.N. hospital was quite satisfactory. Vivan’s relexes and reactions improved.
Side by side we were doing ayurvedic treatment also. We stayed at Jamnagar for one month for special type of aurvedic massage known as Shashtishali Pindswed. The treatment is a type of massage done with Til Oil and Shashti Rice (a type of rice like basmati, column etc.) which is mainly grown in Kerala. It is a specialised treatment given to the patients of slow milestone and in particular to those whose limbs need special attention. In Mumbai also we repeated the same treatment at MGMRC, Charni Road. Though all labour was not in vein, his progress was very slow. The best part of the treatment was that, that he stopped falling ill frequently.
We got very depressed when we thought about his future. Even today we are worried to think as to who will take care of him in our absence? How his elder sister will feel? Will she be ready to accept him? Who will take his care all the time? and so on…
By the time, our family friend suggested us to join COH. We joined COH in August 2007.That time Vivan was 16 months old. We were going
twice a week for the therapy. Both Physiotherapy and occupational therapy were given to him. Here again he showed some progress.
In between we tried homeopathic medicines also, but that didn’t work.
In COH we had to consult the Doctor after every three months to discuss about the progress of the child. The Doctor over there was very passimistic and about Vivan’s growth, he was not happy. Whenever we met him, we used to get depressed by his comments. He repeatedly said that to learn something we should understand it first; Vivan is not having that much understanding. He is still not even sitting independently, then how will he walk? But the therapist over there had a different idea. She was supporting Vivan very well. It was a pleasure and surprise to find that Vivan started sitting with the support. He was babbling a lot but he was not talking meaningfully.
As per the schedule we met Dr. Anaita Hegde again. She suggested us to increase one more day for the therapy. She also suggested to start speech therapy. She also referred `Pacitane and Revocon’ as Vivan was drooling a lot and was falling backwards in sitting position.
A neighbour countinusly visiting Prempuri told us about the Centre being run in the institution every Sunday for treating the Children like Vivan. Thus we came in contact with Dr. Rajul Vasa in september 2008. Here we found that the technique of physiotheray was totally different. We were amazed by the unique approach of Dr. Vasa. Her confidence regarding Vivan was very high, which ultimately boosted our confidance also about the possible wellbeing of the child. She said that the child has a potential to rise in life; but for her treatment, we will have to stop all other treatments, therapies and medicines being given to him. Initially we were little hesitent to stop other therapies, but when we talked to other parents of the co-patients over there, our mind changed. Now we feel that, it was the right decision and God had shown us the right direction.
At the time of our first visit, Vivan could sit independently but for a few seconds only. Someone had to be constantly present in front of him while he was sitting. Now he sits independently even for an hour or so. His understanding also has improved. Earlier he tried to communicate through his reactions, but they were neither clear nor sharp. Now he expressively conveys of what he wants by his jestures, starings and shoutings. Earlier he was not demanding type. He just showed his desire but after a while he use to forget about it. He is now trying to reach the object and demand with force. Now he modestly recognises the pictures of fruits, vegetables etc.in flashcards.
Before we met Dr. vasa : When Vivan was playing with the toy, and if someone takes it or drops down, he will not care. Now he literally shouts for the things he wants. He is not ready to give up. Earlier he used to forget in few seconds, now he will get it anyhow. His brain has started developing. Now he understands many of the things though he can not express them in proper way. But we can understand that he is making demand.
He plays with his dadi very well. When she says `radhe radhe’, he claps his hands. When she asks to show his hair, he touches his head. When she asks him to do `Je- Je’ he joins his hands.
When we arrange utensils for lunch or dinner, he immediately murmurs `mum-mum’, and starts clamouring till we serve a dish to him. He picks up chapati from the plate and often starts eating on his own. He likes mango very much. Watermelon is his favourite fruit. He always demands more icecream.
He likes to listen to music. He also starts singing while the tune is on. He watches comedy serial “tarak mehta ka ulta chashmah” and he laughs also along with us. He watches cartoon network with his sister. He becomes very happy and cheerful when all neighbouring children come to play in our house. When they play he also screems in pleasure with them.
It is gratifying to note that Madam treats not only the patients for their physical wellbeing but she positively changes their family members’ vision, moral and confidence too. Probably a type of depression is always found in the family members of such patients which needs to be addressed properly. Dr. Vasa has realised this psychological satback amongst them. Before we met Dr. Vasa, our mind set was not proper. We were swinging between positive and negative feelings and that affected Vivan’s progress also which let to inconsistancy in his progress.
She is so positive not only about Vivan but for all other kids coming here. While we were not confident about Vivan that whether he will be able to achieve his next step of ‘walking’ & how soon. While we are thinking about next or a step thereafter, Dr. Vasa is thinking & working in a direction which is many steps ahead of us. Her suggestions which are put in to practice by us on the nutritional angle of the food had given amazing results in child’s physical behavior & mental progress.
Her enthusiasm and forcefulness makes parents to stretch themselves to do lot more for their children which is not the case with many others. In a way she is a professional but at the same time she has another personality which compells people to do maximum, thus bringing best out of parents for their children. One wishes that there are many many more Dr. Vasas in this world to give hopes and happiness to mankind.