You can find out more about infantile spasms
and the charity on their website:ukinfantilespasmstrust.org
(IS) is a distinctive disorder, which affects the individual during infancy and early childhood.1,2 It is one of the severe epilepsies of childhood and is indicative of a true Epileptic Encephalopathy.3 The incidence of infantile spasms
is one per 2000-6000 live births.4,5 Infantile spasms
usually develops before 12 months of age, with only 8% of cases occurring in children above one year of age.6 It is characterized by abrupt, symmetric flexion and/or extension of the neck, trunk and extremities.
Cosyntropin (Synthetic ACTH Depot) was granted orphan drug status in infantile spasms
by the FDA in August, 2017.
It is followed by, an intermediate stage with infantile spasms
, and a late stage with multifocal, myoclonic, and tonic seizures.6 The management involves copper histidine supplementation.7 Hence it is extremely important to identify and report as many cases of this disease as possible.
We extracted the following data from the patient files: sex, race, age of onset of infantile spasms
, age at diagnosis, number of clusters per day, number of seizures per cluster, perinatal events, mode of delivery, retroviral status, aetiology, relation to tuberous sclerosis, anthropometry and developmental assessment, neuroimaging with magnetic resonance imaging (MRI) and electrophysiological studies with EEG.
The Texas family moved to Colorado last November so Madelynn could get treatment for Aicardi Syndrome, a disease that causes infantile spasms
and made her legally blind.
JJ, who also suffers with global developmental delay, was only diagnosed in November last year but their difficult journey began when he was just seven months old and began suffering infantile spasms
"Parental suspicions that 'something was wrong' were often discounted by health care providers, and survey respondents frequently reported that health care providers (including neurologists) were unfamiliar with infantile spasms
[IS]," wrote Johnson Lay and his collaborators, in presenting results of the recently completed Assessment of Symptoms and Specialists in Infantile Spasms
(ASSIST) study at the annual meeting of the American Epilepsy Society.
In another survey of 117 parents of children with RE, due to Lennox-Gastaut and infantile spasms
, Hussain et al.
HOUSTON -- The types of diagnostic tests ordered and medication used for treatment of infantile spasms
vary considerably, a large study of children's hospitals showed.
(5) CMA is also an appropriate first line test for individuals presenting with infantile spasms
, with a diagnostic yield estimated at ~11 percent.
"We've confirmed roles for at least seven genes in the underlying causes of epilepsy and shown that these genes may contribute to a spectrum of conditions beyond Infantile Spasms
or Lennox-Casaut syndrome, in which they were first discovered," Myers said in a press release.
A British father of a one-year-old daughter with Infantile Spasms
(West Syndrome) - a severe form of epilepsy- is planning to run the Dubai Marathon next year to raise awareness of this rare disability.
For example, the seizure type of the West syndrome, which was considered a generalized epilepsy syndrome, was infantile spasms
and EEGs showed generalized spike and wave discharges; however; many infants had a causative focal lesion and their epilepsy had been cured by focal resections.
(West syndrome): update and resources for pediatricians and providers to share with parents James WBMC Pediatric 2012, 12:108.