Taming the Spasticity Monster!

"I don't need easy. I just need possible." - Bethany Hamilton

Spasticity is truly a monster. Spastic Cerebral Palsy is one of the most common types of cerebral palsy. 

When people without cerebral palsy perform a movement, some groups of muscles turn on and some groups of muscles turn off. In people with spastic cerebral palsy, both groups of muscles may become turned on at the same time. In some instances, the wrong muscle groups may turn on. This makes movement difficult or even impossible.

Muscles appear stiff because the messages to the muscles are sent incorrectly through the damaged part of the brain. When a muscle is affected by spasticity, the faster the limb is moved, the stiffer it seems.

It is caused by damage to the motor cortex of the brain. Spasticity arises as a result of injury to bundles of neurons in the brain and spinal cord called the corticospinal tracts and corticobulbar tracts.

Spasticity in the upper arms can lead to difficulties with tasks involving the hands and the arms like getting dressed, washing and toileting oneself, eating or drinking, writing and manipulating objects. Spasticity in the legs may affect the person's ability to stand upright, sit upright, transfer from one position to another, move and reposition in bed, walk and run. It can also affect speech.

Although the brain damage will not deteriorate further through the person's life, the effect of spasticity itself is huge over time and can deteriorate the quality of life. Muscles affected with spasticity will not keep up with bone growth resulting in muscle contractures. Shortened and contracted muscles can also lead to scoliosis and hip dislocation. Pain is very much a part of a spastic person's life.

Early years......

We first noticed stiffness in Yatish's legs when he was a few months old. We did regular physiotherapy sessions. However, as the days went by the stiffness seemed to increase in both his limbs. It was an effort to carry him with his stiff little body coupled with no neck control. The easiest way to carry him we found was to face forward.

As expected Yatish did not achieve any of his physical milestones except for the social smile, which is a sight to behold even now. We continued his physical therapy and occupational therapy sessions at the early childhood Intervention centre with the hope that he might catch up. 

When Yatish was  2 years old we went to Mumbai to explore Botox treatment. We consulted Dr Ashok Johari, a very well-known Pediatric Orthopedic Surgeon, who was offering it. Once the Botox was given, it was to be followed with rigorous physiotherapy and it had to be repeated every 6 months as the effect of Botox would wear off. Since Yatish was too young, he told us to come back when he was older.

We also slowly realised the full impact of his spasticity. He had no speech, constantly drooled due to poor head control and poor control of the oral muscles. He could not sit nor stand, nor crawl or rollover. We had to constantly carry him as he could not sit in the conventional baby seats and also we had very few options 20 years back in India.

Between all this, we met quite a few specialists to get opinions on his treatment and how to manage his condition. While everyone mostly recommended physiotherapy and occupational therapy. no one had any clue as to how to gain significant improvements in Yatish's condition beyond conventional methods, which did not work.

Yatish by now had  AFOs (Ankle-Foot Orthosis) to help support or align the foot and ankle and prevent muscle contractures in the calf. 

During this time, we met an Emergency Pediatric doctor from Chicago Children's Hospital who was visiting his family in India. He took a look at Yatish's MRI scans and told us Yatish's cognitive ability was not compromised and that we should not give up on him. We should ensure that he gets an education and gets an opportunity to explore his cognitive abilities. This only reinforced our belief that Yatish was extremely smart, which we knew all along.

Now, this posed a bigger problem for us, we not only had to cater to his medical needs and management of his condition but also now had to look for a school. It also meant we needed to somehow make him sit so he could participate in the school activities. The wheelchairs at the time did not cater to his small body and it was extremely expensive to import them from other countries due to customs duty of 150%, which has been scrapped now thankfully.

We approached Mobility India which provides rehabilitation services and also make prosthetics, orthotics and wheelchair modifications. They built a small wooden chair with very basic materials and straps to hold him in place. Yatish was very uncomfortable in it and the foam material used in lining the chair made it extremely hot and he could not sit in it for a long time. However, we had no choice.

(This was the best pic I could find for his chair)

During this time it was noticed that he had a sternocleidomastoid tumour on the right side of his neck, which made him turn his face to the left. Although they say it goes away within 6 months, in Yatish's case it lingered on making it difficult to feed him and get his vision to the centre. As a result of this, it seems he has developed a strong peripheral vision 😊.

 

When we had visited Boston Children's hospital in 2002 they had suggested we use SWASH. It is a Walking and Sitting Hip orthosis for enhanced seating ability and upright posture.

Yatish was also doing horse riding as part of his rehabilitation during this time and the SWASH greatly helped him. Hippotherapy

Between the wooden chair and a stroller, we managed his early school at the Headstart Montessori.

Mid Years...(to be continued)

A ray of hope................

We were going through the net and found this school called Head start School of Montessori and also got to know that along with normal kids they also had a resource room for special kids. We met the Principal, a pleasant lady called Samina Mahmood. She put us on to the Administrator Geeta Nithyanand. They were apprehensive as they had never previously taken in any such child who was so severely involved. All the special children they had, fell into the categories of dyslexia, slow learners or autistic, but none of them with cerebral palsy. It took us three months and countless phone calls and visits before they finally agreed to admit Yatish. They told us that they would take him on a trial basis for two months and if they felt it was not working they would take him off. We were not sure too, as to how it would work. It was just not about going to school but we also had to find a way to make him sit in the school.


http://www.headstartmontessori.com/

We had heard about Mobility India, which made equipments for the disabled. So we fixed an appointment with the Occupational therapist there and got a wooden chair made for Yatish. To say that it was uncomfortable is an understatement. It was made with very basic materials. It had foam, which got really hot and Yatish was absolutely uncomfortable in it. But we had no choice and he had no choice too.

http://www.mobility-india.org/

Yatish was all set to go to school; we also took a house closer to the school, but then the resource room teacher who was in charge of Yatish quit. Again Yatish’s future was uncertain. The administrator told us that they could take in Yatish only if they found a new special educator or else they would not admit Yatish. Between all this we had met Dr. Pratibha Karanth, a Speech Language Pathologist, who runs a programme called Deall for autistic kids. She suggested an Occupational Therapist for Yatish and we met Bhaskaran, who had just started his practice. He is one of the most dedicated therapists I have met. He introduced me to one of his patient’s mother, who happened to be a special educator and she was looking for work. Thus I not only found a school for Yatish, but also a teacher for him.

Yatish started with 45 minutes classes. I would drop him at school and wait outside for him to finish his 45 minutes. This went on for 15 days and slowly increased his time to one hour and then slowly to 3 hours and I would go in between to feed Yatish as the teachers were not sure how to do it or you can say it was not part of their job. Anyways I did not mind it much. I was very happy that he was schooling and seemed to enjoy it. The two month trial period was over and Yatish had settled well and he went on to complete two academic years in this school.

This was one of the happiest periods for Yatish. He loved going to school and was part of most of the activities in school. He also had play dates with other kids and I made few friends as well. In his second year, two young teachers who were twins joined the school and one of the twins Dipti was in charge of Yatish. I have not seen so much commitment in such a young person. She worked with Yatish tirelessly to make his stay in school worthwhile. Yatish was the darling of most of the teachers who were predominantly women because Yatish never missed a chance to compliment them on their dress and jewellery.

The Montessori Method is quite suited for disabled kids. In fact it was developed by Dr. Maria Montessori, based on her research conducted on the disabled children.

http://en.wikipedia.org/wiki/Montessori_method

This whole experience resolved me to make a decision that I would strive to school Yatish in an inclusive environment.