Ground Zeroed??

With the hope that going to US may help us to understand Yatish’s condition better, we started exploring the options at US. My brother happens to be in Boston and without thinking twice he and his wife told us to come to US and made all arrangements for our visit. Sometimes when you feel you have reached the end of the road, God shows you some way. My brother and his wife were our saviours. They checked out the hospitals and we decided to visit Boston Children’s Hospital, which is attached to the Harvard Medical College.

http://www.childrenshospital.org/



http://www.childrenshospital.org/international/Site1396/mainpageS1396P1sublevel4.html

If you are an International patient, firstly you need to send the entire past medical records, scans, pathology reports etc. to the hospital. Then they will send you a rough estimate of the costs and you will have to make advance payments for the primary appointments and so they also check if you have enough financial resources.

We started the visa process. This was the aftermath of 9/11 attack and getting US visa was not very easy. We went to Chennai for our visa interview. If somebody had visited Chennai US Consulate in 2002, they would know that, the premise was getting renovated (courtesy the 9/11 attacks) and you had to wait in the queue for at least a couple of hours to get into the building, even if you had an appointment. Standing in a queue in hot Chennai sun is no joke and that too with a baby. After finally making it to the interview and for all this effort our visas got rejected promptly. They thought that my husband and I were potential immigrants.

Now we were stuck, while our travel plans and hospital appointments were all fixed, we had no visa. So we again contacted the Hospital, got payment receipts, a letter from the hospital, my brother had already given all the support documents and we re-applied, and we were rejected again. The Immigration official told us to take Yatish to Singapore as it was cheaper there, instead of spending so much money in taking him to US. Now he was the last person we wanted to hear from, thank God he was on the other side of the window and there was a bullet proof glass between us.

We were in a limbo, we had never expected that this would be a major hurdle, but here we were almost on the verge of cancelling our trip. Will we be lucky the third time??

I am not sure how it is now, but then there was no cafeteria in the consulate premises, you were not allowed to carry food and there was only a coke dispenser and few snacks, which you could get and was quite badly managed. I sometimes wonder, after travelling so much in other countries, that whether we are at the receiving end of such bad service, only because we are in India. I think it is high time we learnt to demand good service because nothing is free.

Finally after showing substantial bank balance, assets and also the appointment list and advance payment for the appointments and my hubby told the immigration officer to give us visa for 10 days, so we can consult and come back. we were finally granted visa in our third attempt. What would have been a 10 minute interview took us half a day. The other applicants, who were with us in this ordeal, gave us a standing ovation after our visas were granted. I had only one week to pack and move.

Is it the beginning of the END??

Yatish was about 2 years now and our search for answers continued. We met numerous doctors and specialists, some of whom were useful but most of them left us more confused. But then we also met quacks, astrologers and the sundry, which were not even remotely connected to this. We were trying everything and anything anybody told us, when I think back I feel like a complete nut case who had thrown all rationality out of the window. What was I thinking? Somebody suggested that we take Yatish to a quack lady, who gave some kind of herbal concoction mixed with milk early in the morning. Thanks to Yatish’s reflux, he promptly threw it out before we reached home. Thank God he had more sense. There is no miracle cure.


The state you are in, you start believing that there is a miracle cure, and imagine that one morning you wake up and your child is walking, talking like any other child. You begin to trust everything blindly. We continued the physiotherapy, but were completely clueless about where it was leading to. There was no great improvement in his condition physically but cognitively he was improving which was a great sign. We also ended up doing more CT scans; endoscopy etc. and nothing conclusive came out of it all. What should we do now? There was nobody who could tell us definitively what we should be doing and what kind of future awaited Yatish. I was reading a book called “Stumbling upon Happiness”, which says that when the frontal lobe of your brain is damaged for some reason, you lose the concept of future. You only have the concept of present and now. For once I really wished frontal lobe of my brain was damaged because thinking about future was scary and dark. My frontal lobe is intact and hence the future seemed bleak.

The frustration was really building up and since Yatish being the first child in our family, there was no legacy to fall back on and all of us were first time mom and dad, grandparents, uncles, aunts etc. Every time we got a phone call, the first question anybody asked me and my hubby was if there was any improvement in Yatish. We really did not know what to say. While we wanted answers now, the doctors knew nothing much could be done, so they just wanted us to take it easy. This kind of conflict created a volatile situation. In one such situation the Paediatric head at a leading hospital in Bangalore, suggested that if we had the resources we could take him to US or UK. Then we started thinking about it. Maybe this was what we should be doing we thought. During the course of this we also happened to meet an Oncologist who is close to our family and looking at the state we were in he suggested that it would be a good idea to take Yatish to US and we may get some answers there. He said we should check if we could get to Stanford Medical Centre.

This seemed like an answer to our question !!!

Looking back at the year gone by...

While Yatish started physiotherapy in his second month as soon as his paediatrician found stiffness in his legs, the massage lady Mehboobi sensed it on the 15th day of his birth. I am sure this illiterate lady would have handled hundreds of babies in her life time and instinctively knew something was not ok with him. In her own way she tried to tell me and also assure me in the same breath that everything would be alright with him. God has sent me so many angels to help me along the way and she definitely is one of them. A physiotherapist in my hometown gave me a home programme and she also recommended a splint for his neck, as he had no neck control and as his neck muscles were weak.

http://www.seriousinjurylaw.co.uk/cerebral-palsy-massage-treatment.php


http://www.healthoutsource.co.ke/articles/sci/uploads/SPLINTING.pdf


Yatish did not like to wear his splint and it took all my skills to make him wear for 15 minutes in a day. Moreover, it was done very crudely with whatever material was available and I am not really sure whether it was the best option. Once we returned to Bangalore after 4 months, Yatish had his naming ceremony. Beginning with his first train travel to Bangalore, in his 9 years of life Yatish has travelled so much that he can give any CEO a run for his money.

Once in Bangalore, we consulted a paediatrician and he asked us to get a CT scan. To take a CT scan, Yatish had to be completely still, when placed in the scanner and that is too much to ask of a 6 month old. So the lab technician suggested that I put him to sleep and when he is asleep we can take the scan. So we tightly wrapped Yatish in a sheet and placed him in the scanner. The AC was in full blast and just then Yatish decided that he needs to pee, throwing all our efforts to wind. It took us almost half a day to get the scan done. I am sure there must be an easier way to do this.

Yatish’s first flight was also very memorable. We were on our way to Mumbai to meet Dr. Johari and Asha Chitnis. I was sitting on the aisle seat with Yatish and the air hostess was standing just next to me and she was telling about the safety precautions and looking at her gesturing, Yatish burst out laughing and the poor airhostess was so distracted that she forgot what she was saying and had to start all over again.


Asha Chitins clinic was one more experience. It was actually a tailor shop converted to a physiotherapy centre. At any given point of time, there would be 10-15 kids crammed into that small hole and the hapless parents waiting on the footpath. The sight makes you cringe with anger and helplessness. Anger because these kids definitely deserve better facilities and helplessness because you cannot do much about it. It is like a sweat shop and the kids are put through a rigorous regime, without much thought for their comfort or their state of mind. It makes me wonder, why we always settle for less, when actually we should be demanding a better deal for our children.

During this trip we were also to make his first AFO (ankle foot orthosis). Taking the measurements is a process in itself. First the casting is done in plaster of paris bandage as in when you have a fracture and the mould is made and then the orthosis is made with polypropylene. This was a new experience for Yatish and absolutely did not like the feel of plaster on his legs and was wailing so much by the end of it all we were completely exhausted.

http://en.wikipedia.org/wiki/Ankle-foot_orthosis

Yatish had a quiet first birthday because we were not sure what to celebrate. We just had a pooja in the temple and just gave away some sweets at Sophia school.

You can never be prepared for life.....

In our case we also did not know what to prepare for.....Since taking care of Yatish was 24/7 and more effort, I had to quit my job. It was very difficult decision, since I was climbing the corporate ladder well and I loved my job. This was the worst nightmare of any career loving person. To give it all up and do something which you have no clue where it is going to lead you to...but then I had no choice.

It was a matter of priority and my priority was my son...But in between all this, there were many a time when we felt completely cornered and helpless. While my hubby had his job as an outlet to meet people and do something different, I was becoming a complete basket case...I had to do something to keep me senile. We had a talk and I decided to join an evening college to pursue a post graduate diploma. It did wonders to my state of mind. I felt a sense of achievement. We went about looking for options for Yatish with more gusto.

During this time, we met Dr. Bernard Brucker, Founder of the Biofeedback Laboratory at the University of Miami’s School of Medicine. He was in India on a visit. Dr. Brucker, developed an internationally recognized biofeedback method that uses precise techniques to restore lost functions in those with neural impairment, called the Brucker Method. According to Brucker, this method helps to improve the lives of those with neurological motor impairment by providing a bridge between neuroscience and rehabilitation.

Since in this method the patient has to work on commands, and since Yatish was too young, we had to wait for some time before we could use this method.

http://www.sci-therapies.info/biofeedback.htm

In India, Dr. Brucker has set up a centre at Asha Rehabilitation Centre.


http://www.ashafoundation.org/asharehab/index.htm

On the Disorient Express....

While Yatish progressed very well cognitively, his physical progress was very slow, which was a great concern to us. He was constantly having congestion, was not putting on weight and his reflux continued. He also had a condition called laryngomalacia, a condition in which the tissues in the larynx or voice box periodically block the airway, creating a noisy sound upon inhalation called stridor. Congenital larygomalacia affects children with neurological disorders, and particularly those who have low muscle tone (hypotonia) in the trunk or neck.

http://www.articles.complexchild.com/00011.pdf


As if this was not enough, he also had sternocleidomastoid tumour (a misnomer for muscle fibrosis in the neck) The possible cause of sternocleidomastoid tumour may be injury to the neck during delivery causing muscle injury and subsequent fibrosis. The result was that his neck was always turned to one side most of the times. As of then the only treatment was physiotherapy.


http://pedsurg.blogspot.com/2008/05/sternocleidomastoid-tumor-of-infancy.html


As a parent you intuitively know if something is not right about your child. By now we had done all the possible tests thyroid, Urine amino acidogram, CMV IgM, VDRL, BAER, Echo- cardiogram, X-rays of neck etc.. Nothing really came out of that. So we were back to square one. We continued with physiotherapy, but we always thought if we were missing something, have we done enough and if there is a possibility that there may be some cure for this and we were missing the boat.

We had heard about Botox treatment and headed to Mumbai to explore. We met Dr. Ashok Johari (http://www.thechildfoundation.org/aboutus.html)

We also met Dr.Asha Chitnis, a renowned physiotherapist ( Dr Asha Chitnis, +(91)-(22)-65042623 +(91)-(22)-65042623 +(91)-9821054309 +(91)-9821054309 , 9769989155 Mistry Building, Ground Floor, Shivaji Park, Near Dadar Catering College, Cadell Road, Dadar West, Mumbai – 400028)

While Dr. Johari advised us to wait for six months and then have a relook, Dr. Chitnis gave us a home programme, which meant we were back where we started. There were no easy answers and it was frustrating to say the least.