Pratham Anil Goher, born on 15/05/2009 is a caesarian baby as he had umbilical cord entangled around his neck and mother became hypertensive at the time of delivery.At age 2 months, Pratham had persistent high grade fever and lethargy with refusal of feeds for 2 days.  At first he was taken to a private hospital and treated on OPD basis.  But fever still persisted; hence he was admitted in hospital.  Pratham was noted to have convulsions hence we shifted him to Jupiter Hospital.  Upon admission to Jupiter hospital, he developed septic shock with Disseminated Intravascular Coagulation (DIC).  He went into respiratory arrest and was put on ventilator on 17/7/2009.  After a lumbar puncture, he was diagnosed to have pyomeningitis with septic shock with status epilepticus.  He also had viral meningoencephalitis.  He also had convulsions, staring, multifocal gaze for which he was given Gardenal, Eptoin, Midazolam drip, and also Valparin; still convulsions persisted.  Then he was given Inj. Levipil (Levetiracetam) and then the convulsions were stopped.Upon admission, his physical examination noted he had stridor, hypotension and tachycardia.  CNS examination showed he was unconscious, flexion with painful stimuli.  Until 27/7/2009, he was on ventilator.  He was then started on chest P.T.  and nebulization as there were thin mucoid secretions seen orally and nasally upon suction.

When he was 6 months old, he was not active like other children.  People used to ask us and we too observed the he was not able to turn around his head to left or right.As per suggestion of our pediatrician we consulted a pediatric neurologist.  He suggested us to do an EEG.  The EEG turned out to be abnormal and therefore brain MRI was advised which confirmed that his left frontal lobe was damaged and because of that his motor functions were delayed.

My family members are very supportive.  They have backed me up morally as well as financially.  They want him to stand, walk, run, and go to school like other children of his age.  Sometimes they get depressed but then again become positive thinking that Pratham is a strong boy and will soon be alright.  We will not lose hopes and continue to try our level best until the last penny is left with us.

Pratham has been under allopathic treatment at Hinduja Hospital for last 2 ½ years.  In between we also tried a 2-month course of herbal medicines which was actually intended to be a 1-year course, but we discontinued in between as we found it to be very slow acting and not at all useful in my child’s case.  1 ½ years back before starting with allopathic drugs at Hinduja, Dr. Udani had suggested him a Ketogenic diet—included all fatty foods with weight measures with discontinuation of milk intake and put on soya milk. But we have now stopped it for last six months as we felt there was no improvement in his jerks though his ketone level always remained between 80-180.  We then continued only with the medicines prescribed by Dr. Udani and physiotherapy at Hope and neurotherapy exercises.

I really don’t care what the people think about my child, but yes I do keep on discussing my child’s case with number of people who are related to medicine faculty just to educate myself about such cases and hope to come across better treatment options.  It is very difficult for us as parents to concentrate on work when at back of our minds we are always worried about our child.  We cannot go anywhere with free minds and without any tension because his timetable might get disturbed which we don’t wish to do at any cost.  As a father I do not have any extraordinary expectations from my child, but at least he should be able to live a normal independent life as all other children around.

Here is the list of medications that he has been given since birth:

1. ACTH injection (60 units)—1 ½ months.
2. Sabril (500 mg)—4-6 months
3. Metrazepam (5 mg) —few days
4. Lobasam MD (5 mg) —few days.
5. Zonnegran (100 mg)—-3 months.
6. Topamac (25 and 50 mg) —1 year
7. Wakalert (50 mg)—3 months.
8. Baclof (10 mg)—3 months.
9. Ketogenic diet for 1 year then stopped.
10. Valparin (200 mg)—more than 6 months.
11. Lametac DT (25 mg)—more than 6 months.
12. Lobazam (5 mg)—more than 6 months.

Pratham had very poor general health, he used get frequent cough and cold attacks requiring antibiotics and nebulizations.

As on 21 April 2012, at around age 3 yrs, until we joined Dr. Rajul Vasa, my child was unable to sit by himself, unable to stand by himself, very less use of his left hand to pick up things, often hadcough and cold illness and needed to be taken to pediatrician, and for his age of 3 year-old, he is not able to speak and understand many things that children of his age group do. The only things he could do was push with his heels and move on back, roll on left side with great difficulty.

I would like to mention here that when we saw Dr. Vasa for the first time, she insisted that parents should work on their own child.  This was my main concern as I have to go to work to earn the bread; my wife took the responsibility to carry Pratham to the therapist.  And believe me, the therapy would actually happen for 30-40 minutes and she was losing almost 4-5 hours of time in travelling and in the waiting room of the therapists!! So my child received only 30-40 minutes of therapy in 24 hours, crying most of the time in the hands of therapists, and the rest of the time he would simply lay in his bed.  We didn’t know how we could help the child at home.  Dr. Vasa explained to us that we need to work with brain at least six hours per day. Lots of playful activities combined with special exercises are very important to mould the brain as we desire.

When my wife started working with Pratham, the bonding between the child and the mother improved, and Pratham’s reciprocation to mother’s call filled my eyes with tears. His brain chemistry I think became positive as he was in familiar hands and not crying during exercises as he did with therapists. Exercises became play for him as his mother would actively make it playful without forcing any exercises on him.

Today within a year of treatment under Dr. Vasa’s guidance, my son can sit independently, have food in sitting posture, he drinks water in sitting posture, he comes into kneeling posture independently, he has begun crawling in the whole house, now he lets us know about the nature’s calls, he is learning new words and babbles a lot, he has become so mischievous, moreover, he now gets hold of window or bed and tries to stand on his foot.  He gets no jerks any more, though he is on no medications.  He is learning many new things.  Now he needs to be fed only by his mother and sleeps only by her side.  Previously, though the mother cared for him and carried him all the time, he did not have that emotional bonding, and realization of the relationship.  Now he has become familiar with all family members.  I am very glad that over last 3 years that I have been carrying Pratham to various doctors, nowhere did I find such a therapy where progress of our child depends on our own hard work.  Thanks to Dr. Vasa, for changing the life of my child any many other cerebral palsy children and also their parents’.