This year’s theme: “ADHD, Get the Facts.”
To build awareness of the science, treatments, and consequences of untreated ADHD.
Read more at www.adhdawarenessweek.org
A long term goal of CNF is to raise awareness of the urgent need to correctly identify Infantile Spasms before it’s too late. With early diagnosis and treatment affected children may live a quality life without cognitive disabilities. To achieve this goal CNF has designated the week of October 23-29, 2011 as Infantile Spasms Awareness Week and will make educational brochures; video; FAQs; treatment information; and research developments available online on our websites at www.ChildNeurologyFoundation.org www.InfantileSpasmsInfo.org and at www.ChildNeuroNet.org
Once again, in conjunction with I.S. Awareness Week, CNF is proud to announce this year’s outstanding family who has helped raise I.S. awareness while also helping the Foundation recognize an outstanding child neurologist. The Kather family wishes to share their award with Dr. Harry Chugani.
My son Benjamin began having seizures at six months old. His prognosis was looking pretty grim considering he had already failed two meds and had been seizing relentlessly for almost three months.
I remember being so desperate to find a physician that would treat my sons condition appropriately. I discovered Dr. Harry Chugani at Children’s Hospital of Michigan. I sent an email and did not expect anything until after the weekend, but I received a reply an hour later. Dr. Chugani connected us with a nurse practitioner, arranged an appointment for us with his colleague, and made sure we had the correct information sent over from our son’s neurologist. He did all of this from the airport lounge on the weekend en route to a speaking engagement. This is just one small example of Dr. Chugani’s commitment to his patients.
We then moved onto ACTH injections once Ben was maxed out on Vigabatrin. Ever since, Benjamin has been seizure free. He runs, laughs, climbs on the kitchen counter, talks up a storm, plays with his older brother, and gives some of the best hugs and kisses. I owe this miracle to the dedication, devotion, and knowledge of Dr. Harry Chugani. He embodies all that an I.S. hero is and should be. Dr. Chugani is truly a champion for the cause, and my family will be forever grateful for the time, caring, and compassion he has shown us.
- Emily Kather
I am very humbled and honored to receive the IS Hero Award. Infantile spasms is such a devastating, but treatable disorder, that we (physicians) have to go that extra mile to make these children better. What drives me is the emotional despair of the parents once they have read up on the disorder.
I ask myself what I would do if I were in their situation. We know that we don’t always make the children better, but still, the parents know that we have tried, particularly if we make ourselves easily available to them and they know we are there for them. I’d like to thank the Child Neurology Foundation for all of their efforts to increase awareness and understanding of infantile spasms. I’d also like to thank Questcor Pharmaceuticals for the company’s support for these initiatives and for their support of research into the underlying causes of IS.
- Dr. Harry Chugani, Professor and Chief, Pediatric Neurology with Children’s Hospital of Michigan & Rosalie and Bruce Rosen Professor of Neurology with Wayne State University School of Medicine.
From: The National Institute of Neurological Disorders…link to page
What are Infantile Spasms?
An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.
Is there any treatment?
Treatment with corticosteroids such as prednisone is standard, although serious side effects can occur. Several newer antiepileptic medications, such as topiramate may ease some symptoms. Some children have spasms as the result of brain lesions, and surgical removal of these lesions may result in improvement.
What is the prognosis?
The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood.
What research is being done?
The NINDS supports broad and varied programs of research on epilepsy and other seizure disorders. This research is aimed at discovering new ways to prevent, diagnose, and treat these disorders and, ultimately, to find cures for them. Hopefully, more effective and safer treatments, such as neuroprotective agents, will be developed to treat IS and West Syndrome.
