Diagnosed as a case of neonatal thrombocytopenia; quadriplegic dystonic CP with delayed global milestones; Hast had dystonia++, monosyllable speech. He had been operated for squint at age of 2, had undergone Botox to the lower limb at age of 2, and another Botox to the upper limb as well as lower limb at the age of 5 years. He came to us at age 7, he had squint, he could not sit with or without support and was very stiff tight in limbs and at pelvis. He had severe lumbar lordosis in supine with hip- knee flexion contracture. At age 7, he started with Vasa Therapy.
Hast Shah
Hast Shah before Vasa Concept
With a severely spastic body Hast came to us in 2009. By this time, he had already undergone one surgery to correct his squint and had taken Botox twice; once to the upper limb and twice to the lower limb to reduce the spasticity. With both hands fisted, no speech, constant drooling, delayed milestones, poor head, neck, trunk control, he was unable to sit with or without support and could not do any activities of daily living.
Following is an account of observation made by Hast’s parents over the years while being treated with VASA CONCEPT
Videos
Before - After Video
Videos - After Vasa Concept (playlist)
Progress Timeline
2009 May - Dec
Visible Progress
- He got rid of medicines and splints.
- He has become more active than before.
- His legs log like which were relaxed to about 40% and hence he could sit in cross legged position, namaaz posture, dog posture, cobra posture.
- His inner body parts started developing. Skin turned pinkish from pale yellow color. His biceps started improving due to rod exercise given.
- His immunity has developed and now less frequently he gets any cough or cold.
- I find much more improvement in bladder reflexes. Now even if we go out for 7-8 hrs, I don’t wrap diaper. If he gets the urinating sensation and we tell him to hold, he controls himself and sometimes if it is out of control he tells us that he cannot hold it anymore and starts crying.
- His neck, arms, thighs have also developed.
- His waist has also increased by 1 inch after 2 years.
- His weight has also increased by 2 kg after almost a year.
- His concentration power has developed.
- He tries to pickup one piece of kismis from a plate with the help of a thumb and first finger of right hand.
- His weight bearing on his hands has improved to some extent.
- Earlier also he attended weddings, but this time I found the change in him was that mentally he was cool and watched the wedding nicely. During reception he played with all the kids whom he met for the first time. When we used to introduce him to someone new he used to shake hands with him or her. He was not cranky like before. Full day he was without diaper and told us whenever he wanted to visit the loo. Hast understands his responsibilities e.g. if I tell him to go and search where my mobile is, (moving on his paatla) he goes and searches for the cell and answers me. If I tell him to call the servant from one room to me, he goes and calls her and tells her “mamma!” means mamma is calling you. When the servant comes he reminds her to cut his papaya and go. His right hand gripping has improved a lot than before. He has become very mischievous and enjoys playing with his cousin who has come from abroad; shouting and calling him “BHAI!”
His inner body parts started developing. Skin turned pinkish from pale yellow color. His biceps started improving due to rod exercise given.
2010 Jan - Jun
Visible Progress
- His Speech, body parts and height started developing.
- For the first time he participated in his school sports.
- He sat for few seconds for first time.
- His hands and legs loosened than before now his hips are not flexed while sitting.
- Awareness of surrounding & natural scenery.
- He can somehow manage to move himself from one room to another room.
- He is more relaxed and spasticity has reduced to a greater extent.
- His left hand is more relaxed and opened up than before.
He is more relaxed and spasticity has reduced to a greater extent.
2010 Jul - Dec
Visible Progress
- His ankles are more relaxed so he does camel much better than before.
- He responds to us at one call and answers immediately and perfectly.
- If we insist he can pick up things even with his left hand, so now he is able to use both his hands.
- While wearing T-shirt he puts his right hand alone. While removing his T-shirt we can easily lift his both the hands and remove, which was difficult before.
- Now he speaks “Mumma papaya aapa” on his own.
- While watching the educational DVD he was alone and spoke 2-3 words as soon as he saw the picture on the screen for apple, mango, eye, ear, hands.
- Before we joined Hast used to tell us whenever he wanted to pass urine even if he was in diaper but outside the house he rarely used to tell for potty. At home he was completely out of diaper and mostly used to tell for urine and potty. Now after 7 months 95% he is out of diaper outside as well as inside the house. He passes his stool daily mostly in the morning and sometimes at night. When we had gone to see movie this time, he told us that he wants to go for potty and when we took him to the washroom he did also. So we are so happy that now we are relieved of this problem completely outside and inside the house also.
While wearing T-shirt he puts his right hand alone. While removing his T-shirt we can easily lift his both the hands and remove, which was difficult before.
2011 Jan - Jun
Visible Progress
- Now his thigh muscles have developed. He can do dog cobra on his own.
- While watching educational DVD, he also follows the teacher’s speech. Trying to join the words & make sentences.
- His chest circumference has increased by 1 inch.
- His hips and thigh muscles have developed a lot.
- Left hands fingers have opened.
- Facial muscles & skin has developed.
- He has started eating roti pieces on his own with his own hands.
- His waist, hips, thighs & forearms, spine & chest have improved than before. Earlier the shape of his chest was flat, which now we can see the chest cavity expansion.
His waist, hips, thighs & forearms, spine & chest have improved than before. Earlier the shape of his chest was flat, which now we can see the chest cavity expansion.
2011 Jul - Dec
Visible Progress
- His immunity power has improved & bronchitis attacks are almost nil.
- His vocal sac has opened & developed and he shouts like anything when he is happy or he has to call us if we are in another room.
- He became more active and cheerful.
- He can sit for longer duration in cross leg posture with support and good neck control.
- His pelvis has become quite loose and its movements have become more flexible.
- His thumb-finger gripping has improved a lot and he can pick up even small things as well as wooden blocks and keep in appropriate places.
- His hand to mouth coordination has improved a lot and he is trying to eat as well as drink by himself.
His thumb-finger gripping has improved a lot and he can pick up even small things as well as wooden blocks and keep in appropriate places.
2012 Jan - Jun
Visible Progress
- He is sitting for 1 minute alone.
- He has got better trunk control and can sit straight taking weight on his hands.
- His body is more flexible and relaxed upto 75% than before.
- His feet have developed and also the calf muscles.
- His knees were not at one level earlier, now they are almost leveled up.
- Once we took him to a function where he sat alone almost for half an hour watching everyone.
- He does attempt to get up alone from squat position.
- Tongue is also twisting more, chewing has improved and 5-6 permanent teeth have come.
- Immediately responds on calling.
- He had squinting of eyes which has also reduced remarkably.
- Stays stable in one position in dog, cobra, namaaz for few minutes.
- He is standing with ball support with his feet flat.
- He is trying to speak lot of new words like Cadbury, mobile, corner, etc. He also tries to repeat whatever we say.
- He has become more expressive and more inquisitive.
- Whenever he is having his meals, he sits in one corner all by himself and this time totals up to approximately 2 hours each day.
- He eats rolled paraatha, roti independently. If we make small pieces of the roti and keep it in a plate along with sabji, he picks up the piece of roti and dips into the sabji and eats alone. He eats items like banana chips, biscuits alone.
- We once took him for swimming and his body was completely relaxed, no dystonic movements at all and he enjoyed swimming a lot.
- If we hold newspaper or magazine in front of him, he is now able to turn single page and can notice even small pictures of car, bikes, etc. He recognizes few celebrities like Amitabh, Abhishek, Shahrukh Khan, Salmaan Khan etc. He also likes to see different types of watches. He now likes to watch family programs like Pavitra Rishta, Parvarish, DID and appreciates the good dance. While watching Indian Idol he starts singing with them (now that the spasticity of his buccal cavity has reduced a lot and vocal cords have opened up). While watching cricket, he is eager to play.
- About his studies, since he goes to school he knows all about school, friends, homework, exams and he can answer the questions asked when proper assistance is provided. In school he has learned and knows everything about environmental science for ex. water, food, daily cleanliness, body parts & their functions, seasons, water cycle etc. In mathematics he knows the clock, calendar, bigger and smaller digits, ascending and descending numbers, expansion of numbers, multiplication tables from 1 to 11. He can do addition subtraction of two digit numbers and for three digit numbers he is now trying to use calculator. In Hindi, he knows some alphabets. He reads in mind and points the right option and sometimes speaks also.
- He is well aware of happenings in his surroundings, what is going on, who is coming. He also knows all his relatives and identifies them even if they visit him after long time.
- He likes to stay neat and tidy.
- This year for the first time in his life he stayed without us as he was taken for one night stay picnic by his school. He enjoyed staying with his classmates and teachers a lot and told us that he wanted to go once again.
- He is trying to go from squat to standing posture on his own.
This year for the first time in his life he stayed without us as he was taken for one night stay picnic by his school. He enjoyed staying with his classmates and teachers a lot and told us that he wanted to go once again.
2012 June '12 — March '13
Visible Progress
- He is attempting to get up from squat to standing position.
- His pelvis is much more relaxed.
- Clumsiness in activities has improved.
- Now he does kneeling, bending and standing without crying.
- He can keep himself erect in standing posture with ball support.
- He can now stand with little support.
- He is very cheerful.
- His tongue twisting has improved a lot. He can now move his tongue more freely and chew his food more nicely.
- His calf muscles are more developed than before.
- His speech has improved a lot. He is trying to speak new words though they are not so clear.
- He responds immediately to verbal commands.
- In squat to stand he gets up on his own with very little support at pelvis. He keeps his trunk straight while doing this.
- He carries 85% of his body weight on his own.
- His legs are more relaxed while sitting.
- In December 2012, he started with cycling. Initially we needed to tie his legs and hips so that he doesn’t fall.
- In January 2013, while cycling he is able to keep his trunk erect even if he is not tied and fixed at hip level.
- He is doing squat to stand very well, smoothly, fast. Initially, it took a lot of time for him to get into standing posture from squat posture.
- He is even able to paddle on his own, about half a rotation and move the cycle backwards.
- His height and weight appears to be improved. Skin texture has improved a lot.
- His breathing capacity seems to be improved. He is now able to vomit out any excess cough in his body.
Hast Shah History
Hast is born on 12th July 2002. He is a premature baby by 26 days and was 1.75kg. He is an IVF baby. During pregnancy I had many complications like high blood sugar at the 3rd month and hypertension at 6th month, also pedal edema towards the end of the term. His NST count went down, so the doctor did C-section and saw that there was fecal matter inside and he was immediately admitted to Hinduja hospital in PICU for ten days. There his full body was examined and they treated his platelet count which was found to be low.
Hast got jaundice after 3 days. He was under Dr. Sonu Udani’s treatment. She told to come after a month but we couldn’t go as I was suffering from malaria then. At three months of age he got bronchitis attack with full day vomiting followed by fever of 102 degrees at night which was treated at the hospital. Every month we took him to pediatrician for vaccine and routine checkup. But she never mentioned us that something is wrong with him. Everything was age-appropriate except that he couldn’t sit and crawl.
After 8 months also he was not able to sit independently but because he was weak physically, everyone used to tell us he will learn little late. After 11 months we again went to Dr. Sonu Udani she diagnosed him and told that he is a CP child with dystonia. I started physiotherapy in Hinduja hospital regularly 2-3 times a week {but no one told us or explained us what exactly C.P. is and the seriousness of it). Nobody in our family was aware of any such thing and we were totally blank. Gradually after few months we were little bit aware but we actually got worried when he was 2 ½-year-old. At age of 2, he underwent surgery to correct the squint in his eye. Since even after 2 years of therapy he was not sitting, so we went for Botox to the lower limb as we were told that he would sit within 4 months after Botox was given. The doctor did give him Botox for sitting but didn’t cast him. After 4 months also he could not sit then I asked the physiotherapist why couldn’t he sit? She told that you are lucky that he has not tightened otherwise every six months Botox. Then I left the physiotherapy.
Then we went for Neurotherapy for 10 months. From this he benefited in terms of reduced bronchitis attacks and clear bowels, but again no improvement in terms of sitting was achieved.
Then we went for Kerala therapy for 18 months. In this he benefited in slight sitting posture and standing with full back support, but again while standing his toes touched the ground and not the sole of the foot.
Then I went to Dr. Ashok Johari for 2 years. He gave him Botox at the age of 5 years but Hast did not get vigorous physiotherapy because the person coming home was very irregular. Since the age of 4 he was going to nursery. He enjoyed going to nursery but had lack of awareness of bowel and bladder reflexes.
Again we went to Dr. Udhani for his medication treatment but it did not suit him. He was very uncomfortable. He called us again after 3 months and asked us about his improvement. Then he asked his age and told that if he is not sitting independently at the age of 5 ½ years then he will never sit in his life. We were shocked and depressed but we did not give up the hopes. Again he was given Botox injection to both his upper limb as well as lower limb at this time and was undergoing physiotherapy but there was no remarkable improvement. By this time he made us aware the seriousness of this problem. Due to lack of family support I could not devote full time to him. We also took him to speech therapist & gradually he started speaking few words. We also started sending him to a special school and he also got quite settled and adjusted to the school environment. Here I would also like to mention that at age of 2 years, ophthalmologist had given him spectacles which he didn’t wear anytime as he was very uncomfortable with it. Even then he has been seeing things quite well and has been appearing and doing well in his exams till date.
One fine day in May 2009, God sent his friend as an angel, Mr. Janakbhai who told us about Rajul madam creating miracles. Hast has been lucky enough to be selected by Dr. Vasa. From that day onwards till now, we have seen many changes in our child and we are completely satisfied with her treatment and dedicated nature towards the cerebral palsy children and we have tried to follow her instructions cent percent. Whereever and to whichever doctor I took my child to, nobody ever bothered to open his tight fist which is the most important thing for the child to do any activity. I was impressed when Dr. Vasa told us that first thing we have to do is work towards opening of his fist. Then there were many things that we found were unique in her treatment such as chest pumping, special diet for the children, exercises which were meant for weight bearing which would automatically help the muscles to develop rather than the passive exercises which we had been doing till now.We found tremendous change in our child’s development, which was impossible in other therapy. He is able to sit straight without support for some time, his muscles have developed, his hands have opened, no fisting any more, his immunity power has increased, his squint has almost disappeared, he is trying to speak sentences and that too loudly. He is also trying to stand and now his feet are not tip-toed like before, he keeps them flat on the floor. I would also like to mention that during the first 10 days of his life that he was hospitalized, the doctors did some tests for which they collected skin and other tissue from the sacral region. This wound never healed since then. Now, at the age of 10 years after starting with Rajul madam’s therapy since one year this wound is almost 80% healed now. Dr. Vasa’s therapy helps every system of the body.
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