Child Of The Month
By Barb Corol
Meet Ismael Uriel and his infectious smile. Ismael was born August 2002 and has been with Niños Incapacitados for twelve years.
Shortly after birth Ismael was diagnosed with West Syndrome which is an uncommon to rare epileptic disorder in infants, named after an English Physician. The spasms consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward (jackknife seizures).
Often times the head can be thrown back as the body and legs stiffen in a straight-out position. Each seizure lasts only a second or two but usually occur close together in a series.
West Syndrome is age related, generally occurring between the third and twelve month, generally manifesting around the fifth month. Statistically, boys are more affected than girls.
Compared with other forms of epilepsy, treatment of West Syndrome is relatively difficult and the results of therapy often dissatisfying. Statistically, 5 out of every 100 children with West Syndrome do not survive beyond five years of age; in some cases due to the cause of the syndrome, in others for reasons related to their medication. The outlook is brighter for those who were developing normally before the spasms started.
A large portion (up to 90%) of children will suffer severe physical and cognitive impairments even when treatment for the attacks is successful. This is not because of the epileptic fits, but rather because of the causes behind them. Severe frequent attacks can damage the brain.
For the first three years of his young life, Ismael would undergo numerous tests and studies including several MRI’s. The results of these tests confirmed neuro development disorder combined with the epilepsy.
He was prescribed a cocktail of medicines to include steroid therapy and anti-convulsives, combined with medications to help prevent inflammation for his respiratory problems. The family enrolled him in Fundacion Teleton (a government funded therapy program in Guadalajara) where he would begin aggressive therapies.
Ismael had been doing fairly well on his anti-convulsive medication, however in mid 2014 he started having some serious problems. He was losing weight prompting doctors to prescribe pediasure. His kidneys were not functioning normally so has been undergoing more tests. Sadly he is now wearing diapers.
To date, we have reimbursed the family approximately $180,000 pesos for his therapies, medications, consults, bloodwork, special tests, Botox treatments that he receives twice yearly, prescription glasses, food supplements and more recently, a customized wheelchair and diapers. The family is very grateful to Niños Incapacitados for all the help they receive.
As Director of the Jocotopec Clinic, thank you for the opportunity of presenting some of our children to you.
If you would like to learn more about Niños Incapacitados, please visit our website at www.programaninos.org or call Rich Petersen (376-765-5511) or Barb Corol (376-766-5452).