If you are a new mom then this episode is for you. we have spoken about a medical emergency called Infantile spasms. For giving us a deeper insight into the topic we have with us the President and CEO of Tuberous sclerosis Alliance- Kari Rosbeck. She will shed some light on how we can increase the awareness about these spasms among parents, caregivers and practitioners.
Her work extends to parents and support groups for people with tuberous sclerosis and her organization has hundreds of volunteers supporting the cause.
Infantile spasms (also known as West syndrome) is a form of epilepsy that occurs in 1 in 2,000 children. It typically begins between 4 to 8 months of age
December 1- 7th is the infantile spasms awareness week. Every year a coalition of international organisations teams up to raise awareness about these spams. Like the American Academy of Pediatricians, tuberous sclerosis alliance, epilepsy foundation, child neurology foundation, etc.
I am humbled to have partnered with them to help raise awareness about infantile spasms. They are one of the primary symptoms of a condition called tuberous sclerosis. The work of Tuberous sclerosis Alliance extends to parents helping them identify TS and manage its symptoms easily. It also brings together families with TS thus building a support group for affected children.
What are Infantile Spasms?
Infantile spasms (IS) is a seizure(1) disorder in babies. The seizures (or spasms) make muscles in the arms and legs stiff and bend the baby’s head forward. They look very much like a startle. Affected babies can also have slow development or a loss of an achieved milestone like crawling, babbling, sitting up.
Why one needs to know about infantile spasms?
These seizures need to be diagnosed as early as possible. The primary reason for this is each time a seizure occurs, the baby’s brain suffers damage. They are not controlled in time then the child is at an increased risk of getting epilepsy disorder in the future. Though the seizures can easily be controlled using medications, early diagnosis is quintessential for this.
When should parents be on the lookout for it?
Infantile spasms are first seen in the first year of life, between 4 to 8 months of life.it can rarely be seen in childhood. So if you are a new mom, take a look at the videos below and get them embedded in your mind. Prior knowledge about these spasms can save you a great deal of hassle. They can easily be overlooked or brushed off as startle reflex or colic. Every newborn has the startle reflex and its movements are pretty much similar to infantile spasms hence the confusion. Take a look at the video below to differentiate between the two.
What to do during Covid era?
The covid 19 era has bought with it tons of uncertainty. Stepping out means exposing your self to the virus and putting your family at an increased risk of contracting covid-19. So what to do if you have even the slightest hunch that your child’s movements might be infantile spasms then remember:
Infantile spasms are a medical emergency, You need to rush to the hospital to get your child diagnosed.
A helpful mnemonic tool – an easily remembered acronym—STOP
You can connect with Kari or support the TSA below:
You can connect with Kari Luther Rosbeck on her social media and find out more about Infantile spasms and Tuberous sclerosis on their website below. you can support them by helping to raise awareness about this condition and via donations.
If you suspect your child might have Autism or ADHD then here are a few insightfu lepisodes with Physician and mother of an Autistic child- Dr. Farah and her journery through his childhood.
Pediatrician Dr. Qadeera Baghban discusses signs of ADHD in great detail here.
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