Child of the month
By Barb Corol
Joaquin, who will be three in December, was diagnosed with West Syndrome. This is an uncommon to rare epileptic disorder in infants named after an English Physician. The syndrome is age-related, generally occurring between the third and twelfth month, generally manifesting around the fifth month. There are various causes but often caused by an organic brain dysfunction whose origins may be prenatal, perinatal (caused during birth) or postnatal. Statistically, boys are more affected than girls.
Joaquin was diagnosed in his fifth month but Patricia (mom) says there were signs of problems several months before. Studies have shown that in some rarer cases, spasms may occur in the first two months. Following his diagnosis, Joaquin would need to spend more time in hospital than out. Doctors were trying to control his “jackknife convulsions.” Research indicates that spasms tend to occur upon awakening or after feeding and often occur in clusters of up to 100 spasms at a time. Infants with this diagnosis may have dozens of clusters and several hundred spasms per day. Sadly Joaquin falls into this category. Patricia brought Joaquin to Niños Incapacitados with a desperate plea for help in July of 2012.
During the initial intake, we learned that once the doctors were confident with their diagnosis and came up with a cocktail of anticonvulsive medicines, they decided it was time for Joaquin to go home. It was generally felt that the family could provide better care for Joaquin one on one. They were given a hospital bed and all the paraphernalia needed to care and feed Joaquin. Mom was instructed on proper feeding and medicating techniques. Due to the number of spasms Joaquin has throughout the day, at present these are occurring every fifteen minutes, all feeding and medicating is done through a drip bag hooked up to his bed.
Unfortunately Niños Incapacitados cannot reimburse the family for these treatments as the therapist does not issue valid invoices, which we require under Mexican Charity rules. Patricia says the family is happy to pay as it provides a much needed respite for her. To date, we have reimbursed the family $45,000 pesos covering Joaquin’s anticonvulsive medications, drip bags and supplies, diapers, medical wipes and gloves, food supplements, vitamins, as well as transportation to and from the hospital.
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.
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. This is a very sad case and one that we do not feel will have a positive outcome. 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.programaniños.org or call Rich Petersen (376-765-5511) or Barb Corol (376-766-5452).
Just a reminder that our Niños Incapacitados monthly general meetings will resume on Thursday, September 13th – same time and place: 10 a.m. in one of the meeting rooms of the Hotel Real de Chapala in Lower La Floresta.