Maahi's History

I was very much depressed when Doctor talked about Rett syndrome.  My senses at once dismissed the diagnosis to be.  My beautiful little princess Mahiis having some problem and we were very much worried for her.  But only on the basis of her continuous flapping, it can not be termed Rett Syndrome.  We always used to surf through medical reports on internet related to Mahi like symptoms of slow progress and delayed milestones.  But Mahi’s physical growth was alright with her age.  Her height, weight was quite normal to her age.  In fact such diagnosis alerted us to act more cautiously for Mahi.

These were the days when we were almost pushed to the walls so much so that we were all the time obsessed with worries as far as Mahi’s condition was concerned.   Mahi is our first child.  Myself and Viral got married in 2002.  There were lot of hardships on family front and as such we were excited to know the news of my conception and were eagerly waiting for the baby. His or her entry was destined to bring blossom in our conjugal life.  Mahi was born on 15.12.2003.  In the ninth month of conception, suddenly due to drain of uterus water, I was admitted to hospital and forced delivery was made with doctor’s intervention.  How ecstatic we were to see little princess who was further named Mahi.  We have already started our plans with the baby, to shower her with parental love which Viral and myself were deprived of.

On the fifth day, Mahi was diagnosed with jaundice and was put in ultra violet rays cubicle.  Still we never anticipated what was going to happen.  Doctors took immediate steps to get out of the present situation and we came home with the newborn when the tide was over.  Apparently Mahi’s progress was up to the mark.  She gained weight.  Her feeding was regular.  And above all she was the most beautiful child! We were very happy.  We didn’t much notice that she was not showing progress in her childhood activities.  She was not turning to sides.  Her responses were not spontaneous. Her grandmother’s experienced eyes sensed something abnormal.  She indicated to us about this.  We showed Mahi to doctors from time to time, but nobody endorsed grandma’s opinion.  We had started to apprehend contrary to doctor’s opinion.  We consulted pediatrician Dr Dhiren Shah.  When Mahi was seven months old we took her to Dr P G Samdani.  This was the first time that doctor talked about some physical problem in Mahi and remedy he suggested was of physiotherapy.  We got her Bera test done which did not show any abnormal symptoms.

When Mahi was one year old, she caught very high fever and got febrile convulsion.  We were very much frightened.  Mahi was admitted to the hospital.  All sorts of tests were done which included CSF Lactate,Serum, Chromosomal test, FISH test. Thyroid test.   In her MRI test it was revealed that she had AGENESIS OF CORPUS COLLOSUM.  The result was rather shocking, as if the connection between two parts of the brain was absent.  Till now Mahi was considered to be slow learner, but the present diagnosis was in the category of Cerebral Palsy.  The fear expressed her grandmother was quite true!  Convulsions were adding to her and our misery.  She was put on Valporin. 

We consulted Dr MediniPadhye for therapy.  The exercises were scheduled for 40 minutes twice a day.  Mahi could not approve the kind of exercises which included pull ups.  She used to cry incessantly.  She used to chew whatever came handy, she had lot of drooling.  It was miserable to watch her giving no reaction, forget about interaction, she could not fix her gaze on any object, she was with us physically but our existence could hardly made any difference to her. The therapy could not bring much improvement in Mahi.  We were on the verge of collapse, in an attempt of search, we approached many doctorsall in vain.  Dr Udani was a well-known name who diagnosed her of Rett Syndrome!  We couldn’t approve this and even Dr Samdani turned it down.  We continued various kinds of speech and occupational therapies with one or the other doctor.  Ami Dharia was one of them and Mahi showed some progress in her language sense.  Doctor Ami suggested Mahi cannot concentrate her gaze due to poor eyesight and suggested to get her eyesight checked.  The doctor at Bomaby Hospital made specs for her and suggested that she will have to be operated to remove squint in her eyes preferably before she completes two years.  We consulted another doctor who fortunately dispensed with the idea of operation and specs he said are not required as she had little eye exercise. 

We took recourse to religious discourses too, worshipped the deities like Siddhi Vinayak, Ambamata.  All types of faiths were blind and had no direction.  Viral once met one saint who advised him to have faith in nature.  Viral never took resort to any religious rituals then on. 

The dose of medicines for convulsions was to be reduced gradually.   After 6 months she again got convulsions for a second.  She turned her eyes.  We were grappled with fear and this was a point from where we never dared to stop medicines though we felt she used to be under the spell of drowsiness all the time.  We were told there was no other alternative to this.  Of course life is always larger than anything and our priority was to save Mahi’s life first and then make her stand on her own.  Under the circumstances the number two priority remained like a untouched dream which was not to be!  Our quest for a healthy happy home walked away from us. 

Mahi, when she was one and half years old, we started neuropathy with Dr Lajpatrai Mehta.  We used to take her to him at Bandra from Girgaum.  It used to be difficult in rainy season.  We also put her in Tiny steps nursery school.  She liked the school.  Teachers were nice to her and allowed her to use paint and brushes.  We also tried to give her rice massage at Kerala Ayurvediccentre.  It was all like changing jobs.  One after the another.  Mahi was no less than a full time job for us.

When Mahi did not get any convulsions for a long time, we stopped the medicines after two years.  But this was to be a disaster!She got convulsions no less than 20 times in a day!  Again doctor Samdani, Bhatia hospital, increased medication. 

When Mahi was 2and 1/2 years old somebody suggested us to consult Dr HemalVora.  Again same passive and Bobathexecises.  Dr tried to straighten her legs to make Mahi stand and then make her walk few steps.  His sister TeenaVora took keen interest in Mahi.  We never knew how far such exercises were useful to her and how much the effect was to stay.   Dr Hemal was speech therapist.  She also worked on Mahi to teach her speaking abilities.  As a result Mahi started humming few words.  She started recognizing flash cards.  Her face reflected some acquaintance with words.  We thought soon Mahi will also stand and walk. 

In the meanwhile Dr Ami Dharia went out of India.  We consulted Sonali and Ayesha Mehta.  She was given some breathing exercises in addition to oral motor and Handle therapy.  Mahi’s drooling reduced.  We felt Mahi’s memory is sharp.  She likes and recognizes animals and birds.  She likes stories related to them.  She likes to make friends with alphabets, acronyms, movements, sequence stories.  She likes variety.  She likes soft music.  She likes to mess up paper and plastic.  May be because it makes sound.  Slowly her likings have openings.  She gets bored with stereotypes.  She gets bored fast with the toys. 

Mahi’s aunt, Viral’s sister was much concerned about Mahi.  She always tried to search from internet and other sources for the possible remedy for Mahi.  Thus we literally approached number of doctors like channel surfing! 

Mahi’s weight at the time of birth was 3 k.g.  I thought she will have to be fed nutritious foods which will boost her brain and she will improve.  I never realize that in absence of physical exercise, she is gaining weight. She was 30k.g when she was 5 years old.  It became difficult for us to carry her up and down from 3rd floor.  Incidently, we could seek one flat on ground floor nearby.  Days were passing by without remarkable improvement in Mahi.  She fell down when she was 4 and ½, her left leg got hurt.  Again she got burnt on the same leg.  Due to this her exercises discontinued and she lost whatever confidence she had gathered so far.  She was not ready to keep her foot on the floor.  We got the foot and hip x ray done and felt relieved when no problem noticed.  During this time she was doing exercises under the guidance of HemalVora. 

One day somebody talked about some doctor Rajul Vasa who had had a camp in Modern High school.  It was also heard somebody saying that she treats CP patients in totally different manner.  It was also said to be her treatment was effective.  One after the other doctors had become a part of our routine.  Viral thought of adding one more to it.  There was as such no harm to go and see.  Anyway Modern Highschool was Viral’s school and deep in his thoughts Viral reached that “different” doctor out of curiosity.

It was like a call of destiny which pushed Viral to Modern Highschool.  Dr Vasa was discussing with some patients and parents, Viral at once could not approach her but could meet Trupti Madam.  Trupti made discreet inquiry about Mahi, about her various treatments, her present condition and everything.  She advised to him to write her case history in detail separately by father and mother.  She handed over one form which included all the like ailments of children like Mahi.  And the declaration! It was like a bond, to stop all the therapies and medicines once Dr Rajul’s treatment starts.

Altogethernew doctor about whom we didn’t know anything, this was my first reaction when Hiral told me about all this.  What is the guarantee that it will work? How to take a risk that too to stop convulsion medicines altogether?  We were on the verge of dire difference of opinion.  Slow but some improvement was showing now after a long time.  We were accustomed to take her to doctors for therapy.  We fought whole night and did not speak to each other two days. Viral as impressed with the natural course of treatment adopted by Dr Rajul.  Inthat short passage of time he had sensed the zist of happenings with other children.  His mind’s pendulum had already turned to this new treatment.  He took me into confidence, persuaded me a lot and ultimately I gave up not very willingly.  The hard course had started….

Main pillar of Dr Rajul’s treatment rested on parental participation.  Everything said and done this was little new to us.  We had done everything possible for Mahi, we had never retreated, nor were we bothered about the expenses.  But it was our turn to get astonished.  Doctor Madam was not going to charge a single penny from us or from anybody!  We had to at once stop all the medicines.  Fullstopto all passive exercises and Bobathexercises.  Compulsive forced standing, walking with devices was not required for Mahi.  In her eyes, all compulsive exercises had done more harm to Mahi than any small benefit.  She was given sand exercise which was very exhaustive even for us.  Her diet was chalked out.  Simple food, simple and easy to digest.  Shedding her extra kilos was important.  She had cautioned that body may resist to such different treatment, the reaction may be in form of fever.  But not to worry.  Keep patience. In the initial days Mahi gave up food even water.  She had loose motions.  We couldn’t see her pale face, though all this had been anticipated by doctor madam. 

ON 23RD august Mahi got Fever, it got cured only with Sponging.  After that she got throat infectionimmediately which was cured with Gentle Massage with Castor Oil. But she had given up food and water intake.  We were panicked.  Without water and food how Mahi will live?  If convulsions repeated?On 28th she started vomiting.  We got her admitted to hospital at midnight.  She was discharged after four days.  How to approach Doctor Rajul when we have acted against her advice?  But there was no going back! 

We made Trupti Madam’s shield.  Our deliberate protest was forgiven as if nothing had happened.  Mahi’s travel to life started thus!

In the initial 3 moths Mahi’s restlessness was obvious.  Her food luxuries had been curtailed.  She had almost given up food in these 3 moths.  We were under the shadows of confusion whether to be or not to be with this!

But our patience started paying very soon.  No extra calories, no compulsory exercises, no hazardous medicines.  Mahi’s weight reduced by 9 kilos in just 5 months.  Our fear for convulsions was proved wrong.  In fact due to reduced weight Mahi appeared to be relaxed.  Her legs straightened in perfect shape.  She was unable to fold legs due to excess flab, now she could sit comfortably with folded legs.  This was the glimpse of paradigm shift.  She became active on her own, started murmuring as if her lips wore the blossom of words!  Her self motivated activities were really new to us!

With continuous sand therapy for 6 months, exercises on big ball yielded results which we had never anticipated.  We noticed that the exercises were best suited to her ability and were easy to adapt.  Not only her posture improved but she started holding her neck confidently like child’s attempt. Prior to this, her gaze used to be fixed in one direction, now she started glancing in all the directions.  Drooling reduced. Her flapping on the floor also reduced.  She started taking cognizance of the surrounding.  Her reactions stabilized and with this squint in the eyes also reduced.  The coordination in her limbs was visible.  Her actions while changing positions came quite easy.  The eye sight improved, EEG was normal which was miraculous.  She looks beautiful now with proper height, weight 21 kgs and proper posture.  

The rise in Mahi’s mental graph was perceptible.  Her actions speak of her willingness or else she protests.  As such, with Dr Rajul Vasa’s 360 degree monitoring and treatment, we could feel Mahi’sexistence as one of us and she was also drawn towards us.  It was as if we are witnessing her early childhood now! Better late than never.  Now she tries to draw our attention if we are busy with others, feels our absence, her eyes are expressive, she responds with an actions of her hands when she hears her favourite sound of paper or plastic. 

We were so engulfed in the endless circle of exercises that we never noticed that Mahi has her own personality.  Dr Rajul’s attendance gave her, her own personality.  Earlier we never thought of having second issue.  Our life had turned into a closet without any ventilation whatsoever.  With visible change in Mahi, we could breath fresh air. When we see glitter on Mahi’srosy cheeks, emotions on her face and starlets twinklingin her eyes, we shudder with the memory of those sulky icy days! 

Now we are blessed with a baby boy.  Mahi doesn’t react, but we sense she is thinking something in back of her mind.  Maahi’s present condition has brought rhythm in our life.  Credit goes to Dr Rajul Vasa.


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