Vivan's History

Vivan, an infant baby boy, the son of Anjali and Janak Ghadiali, born on 28th May 2006 at H.N. Hospital, Mumbai. The delivery was planned scizarian. A paediatric physician was present during the delivery. The newly born child cried after birth and the delivery was declared normal according to the doctor. Birth time weight was 3.5. Kgs. The child and mother were discharged on 1st June 2006.

Nothing abnormal was detected till first 4 months after birth. He was turning on one side, but he was not holding his head properly. Responding casually to the sound and not playing with the toys. A regular check up with paediatric physician was done atleast once every month.

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

3) NH3

4) Bicarbonate

5) Lactate

6) Calcium, Phosphorous, Alk. phosphatase

7) Karyotype

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.

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