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)

Healing with the horses.....

Hippotherapy or equine therapy means treatment with the horses. For the first time when I heard about equine or hippo therapy from a fellow parent, I was not sure whether I should take Yatish for this therapy and whether it would help him. I had doubts like how would he sit up on the horse, would he be scared etc. I got the contact of Pushpa Bopaiah, who is the one of the very few qualified Hippo therapists in India. She was having her sessions in the army campus and the horses were from the army stables. The sprawling army grounds were an ideal setting for horse riding. Pushpa is a rare individual who has combined her profession of special education and her passion for horses, into her mission to help special children. The Healing Horses, equine therapeutic training programme run by Pushpa, provides therapy to children with varied disabilities.


http://www.healinghorses.in/index.htm

Once I met Pushpa, all my fears were allayed. Yatish was ecstatic seeing the horses. Pushpa ensured that he was safe and secure with the trainer holding him. It was a 45 minute session and the children rode around the grounds doing different strides, plucking leaves, counting numbers and playing with rings. Yatish absolutely loved it and looked forward to it every weekend.

The three dimensional rhythmic gait of the horse is very similar to human gait. So when the person rides, his gait is stimulated by movement of the pelvis –rotation, backwards and forwards and side to side movements. Hence it helps in improving posture, balance, mobility and also motor functions. It is also believed to improve cognitive, behavioural and communication skills. There is also some kind of bond which develops between the horse and the rider, which cannot be quite explained. Whenever I saw these kids on these huge horses, it looked as if instinctively the horses knew that they had a sick child on their back and they took utmost care to make their strides gentle. It was an amazing sight to watch.

The hippotherapy continued for quite some time, because this was one therapy which Yatish would do 100 percent without much fuss. He loved the whole routine of driving to the grounds, doing the therapy and having his breakfast at the army canteen.

Pushpa worked closely with Dr. Deepak Sharan, who is a renowned Orthopaedic surgeon and has done some pioneering work in spasticity release surgeries for cerebral palsy patients. She suggested that it would be a good idea to consult him and see if we could do something about Yatish’s spasticity.

Until now we had never thought about surgery and considering how tiny and frail Yatish was, doing any kind of invasive surgery was something we were not sure how Yatish would take. But we had very few choices. We had checked on Botox, but the effect of Botox stays only for a short time, so we have to keep giving it at regular intervals and the follow-up therapy had to be really good, to get the real benefit. There is also a drug called Baclophen, which is a muscle relaxant and an anti spastic agent, but it has its side effects and is generally not suitable for younger children.

I fixed up an appointment with Dr. Sharan and this was the beginning of a new chapter in our lives..