Story Of Pragdiswaran

Story Of Pragdiswaran

Pragdiswaran 10 year old boy from kuttalam, a small village in Mayiladuthurai district of Tamilnadu.
At the age of 30 months, he developed redness on the neck and taken to local doctor. As the local doctor referred him to Thanjavur town hospital .They suspected cancer and did biopsy. As part of treatment, he was given injection and developed swelling over the whole body.

Finally he was taken to Christians Medical College, Vellore and diagnosed to have Fop and it was confirmed with genetic test. Though it was explained to them about Fop by doctors in CMC, the parents were anxious about child’s condition and wanted try better treatment in Chennai. But there also they were given the same information about Fop.

As they experienced no progression in the child’s condition (Either with or without steroid) during the episodes of flare ups and also because of distance of treating hospital. So they stopped going for any treatment.

During the last one year period, he had flare ups 3 times and recent one is 2 months ago. But no treatment was given for the same.

Activities o f daily living (ADL)

  • Eating -partially independently (Food should be kept on the table)
  • Brushing up teeth – Partially Independently.
  • Bathing – Fully Dependent (With the help of mother)
  • Dressing – Dependent (With the help of mother)
  • Toileting -Dependant (Standing and passing. Cleaned by mother)
  • Getting up / down from floor – Dependant. (Parents)

The observation made during the home visit:

  • Able to use small cricket bat to put on and off light and fan switches
  • Playing with father and elder brother (hitting the ball with bat)
  • Able play the caroms in standing position using small writing table.

The following recommendation made based on observations and discussion:

  • Provide Low level cot which will make him ease in sitting down and getting up.
  • Give him standing table for dining /play carom board /colouring and painting.
  • Try with lighter bat to play cricket.

Both parents and the boy felt happy about home visit as caring attitude of Fop trust which made them feel good and willing to contact Fop India / IFOPA for further information especially about treatment.