Shivraj Rana
Shivraj Rana

Shivraj's History

Shivraj was born on 04/03/2003 at 38+ weeks by an emergency caesarean section because his heart rates were decelerating. Couple of times during my pregnancy I was sent to Emergency due to high blood pressure.  On the day of Shivraj’s birth, I was sent to the hospital due to very high blood pressure and presence of protein in the urine (obviously unaware of everything at that time).  I was kept on observation the whole day and the decision was taken close to midnight that Shivraj should be delivered via C-section. My pregnancy was considered as a case of Pre Eclampsia. After birth Shivraj kept on crying. As I was under medication from the C-section I was unable to move at the beginning, but as there was no assistance from any nurse during the night I managed myself to get Shivraj out of the crib and made him sleep next to me; he still continued to cry.  I tried calling the nurse several times but nobody came. That whole night Shivraj starved and the next morning he turned bluish–purple in color when he cried to the point where my husband had to call for assistance of a doctor passing by to observe Shivraj as he looked unwell.  The Doctor took urgent attention and took out the phlegm from his mouth and also checked his sugar which was diagnosed as very low. Then he was urgently taken away to the Special Unit where he was kept on drip and glucose. He had one epileptic attack that night (7 mins long) and 2nd attack followed early morning (4-5 mins long). The doctor still was unable to explain the cause of the epileptic attack as his sugar level was in control in the NICU. He was then also given sodium, which too had become low. The Doctors assumption regarding the seizures was “Low Sodium.”  Shivraj stayed at NICU for 10 days before he was discharged.

We were initially told by the doctors that everything is fine and normal. He was a very cranky baby; he would hardly sleep at night or during day.  He had had reflux problem as well for which he was kept on medication for some time.  He would vomit a lot as well.


VISIT TO INDIA:

I visited India when Shivraj was 8 months old and we consulted few doctors for an honest second opinion to the NHS. At this point when we were confronted with the truth as one doctor point blank told us NOTHING could be

done with your son even though you may pray to god or you go and see as many doctors, he is going to remain like this “HANDICAPED”. Needless to say it was a big shock to us; doctor  fromKashiba Children Hospital.  He saw Shivraj and told us to start the physiotherapy because he had the condition called CP.  We actually didn’t know at this point what CP meant and what the condition was to which we then investigated.

Shivraj at this age used to just lie on his back with eyes rolled over much of the time or would just stare at the ceiling. Feeding him was still the hardest task ever. He used to vomit a lot nearly after each and every feed.

Meanwhile my husband contacted Shivraj's pediatrician and asked them why they were unable to identify his condition. We had an appointment in place after I came back from India. When we saw the Doctor he said we don't tell the parents truth at this stage because some parents cannot handle the truth and will give away their kids for fostering.

Shivraj had his MRI Scan and the report showed some damage in his brain; something called "Periventricular Leucomalacia".  It was heart breaking however life has to go on. We persevered and followed the exercises shown in India and Shivraj showed some improvement.   He would sit with some support however each step was mountain to climb.

 

FURTHER VISITS TO INDIA:

I decided to go back to India and continue with the exercises being taught to me. On my second visit to India I had planned to stay longer and to get more experience in regards to the physio.  I had to do lot of hard work on Shivraj. We had daily a physiotherapist coming to my home in India who did exercises along with me on Shivraj which benefitted in myself learning many of the Physio exercises which I could perform independently on my return to the UK, hence in addition to the therapist we also did those exercise ourselves with him daily.  To the best of my efforts, Shivraj started to sit up; I think he was over 1 ½ -yr- old then. We did all the exercises with great commitment and effort and he started to bunny hop just when he was 2 yrs or over 2 yrs old. He also showed good improvement in his diet.  I also took him for speech therapy and occupational therapy at the children's hospital. Shivraj started to babble and also we found out that he would turn his head and would try to look for me. He would look around whenever we took him out.  During this time I was constantly back and forth between countries to do best for my son and increase the therapy we could offer him.  Before returning back to the UK, one day I saw the board of Krishna Centre, it had

everything- Physio, OT and Speech. It was lingering in my mind, however due to time constraints I didn't have enough time to visit and evaluate the services the centre provided.

Thereafter I came back to UK and carried out the exercises at home by myself.  Shivraj showed very little  improvement but still we took it positively.

It’s then we met our family friends and they recommended Doctor Vasa for Shivraj. I phoned Doctor Vasa’s assistant Trupti madam and tried to book an appointment. It wasn’t as easy as I thought to just phone and book an appointment.  I had to face tough questions from Trupti madam during my call as she suggested that we will have to stop all the other therapies because it will clash with Dr. Vasa’s therapy and that parents should be 100% committed towards the therapy. Once we confirmed eventually I was lucky enough to get an appointment and see Dr. Vasa. I had to send Shivraj’s history and all the current exercises in a DVD which I was doing with him. To be honest this was the first time somebody had asked anything like that from us before an appointment which we thought was fundamental to assisting this condition.


FIRST APPOINTMENT WITH Dr. RAJUL VASA ON AUG 2009:

When I went to the centre and spoke to the parent’s children who were undergoing Dr. Vasa’s treatment, I got the feeling of being in right hands (first time ever). I have seen many Doctors in UK but never met a doctor who had looked into Shivraj’s case before hand and discussed anything on how to resolve things. Every doctor will always ask us what happened and what’s wrong with him. We found Doctor Vasa to be very committed to each and every child and in return she expects 100% deliverance from the parents to follow the therapy and diet.  Obviously doctor Vasa found all the exercises I was doing with Shivraj to be wrong. I straightaway stopped everything and started from scratch. It was a big setback for us because after doing exercise for 6yrs finally Shivraj had started to walk and now they were telling him not to walk and stand up.  After starting Dr. Vasa’s therapy, we saw a big difference in Shivraj.  For instance, he lost quite a lot of weight after his pelvis got half loosened in July 2010. Also we stopped making him wear splints and he stopped using the walking frame. For not making him wear splints and not using walking frame I faced problems with school and the Physiotherapy Department. Eventually everything got sorted after the Physiotherapy Department made me sign a letter stating “that I am totally responsible for not making him wear the splints.”  Also the school was not still happy considering the health and safety reasons of the staff dealing with Shivraj on daily basis because we asked them to stop using the walking frame for Shivraj. So after consulting with Dr. Vasa we bought a powered wheelchair for Shivraj, so that he does not have to use the walking frame at school, which he is using even now.  Soon after that as per Dr. Vasa’s advice we took Shivraj out of the school anddid home schooling for 1 yr. It worked really well for Shivraj. I got more time to do exercise with him and also we provided him good education at home. He became more alert and his concentration span also improved a lot. He learned a lot in this 1 yr than he would have in school. He is able to read small books. He knows one digit addition and subtraction. He also knows 2, 3 and 5 multiplication tables.  In terms of the exercise he got really flexible all over. We found his legs muscles are more flexible now than when he was wearing the splints. Also there is a bigimprovement in his sitting posture. His trunk has started to be straighter and stronger than ever before. His pelvis got more relaxed but not completely relaxed yet.  We are currently working on it. His fine motor skills have also improved. His finger grip has improved.  He will eat by himself with fingers. Also he has started to dress himself. He will brush his teeth himself with very little help from me. He is also able to take bath after I have put soap on him with little help to put water on his back. He will go toilet himself for wee and is also able to sit on the toilet by himself now.  Shivraj has now started going to school again since September 2011. Everybody at school was very happy with his progress. They found that he is very happy in himself and also his concentration skills have improved along with his education level.  We are all very pleased with his progress and all the credit goes to Doctor Vasa.

She is Godsend to us. We would not have achieved all this without her help and advice. We are very thankful for her valuable time and advice.

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