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.