Ep. #16 How to Identify infantile spasms and take action. With President of Tuberous Sclerosis Alliance- Kari Rosback

Ep. #16 How to Identify infantile spasms and take action. With President of Tuberous Sclerosis Alliance- Kari Rosback

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. 

This is how infantile Spams looks

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.

This is not Infantile spasms.
This is Moro’s reflex and it is absolutely normal.

A helpful mnemonic tool – an easily remembered acronym—STOP

image credits: https://infantilespasms.org/

You can connect with Kari or support the TSA below:

RESOURCES

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.

Infantile spasms

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.

Podcast on infantile spasms

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Until then,

Happy Parenting

References

  1. https://kidshealth.org/en/parents/infantile-spasms.html#:~:text=Infantile%20spasms%20(IS)%20is%20a,%2C%20sitting%2C%20or%20crawling).

This Post Has 38 Comments

  1. Sweetannu

    Saved your post and also shared on Pinterest. These uncertainties during Covid times is extremely stressful for all. Thank you Doc

    1. Dr. Rahat Sayyad

      True Anahita. Most of our problems in the pandemic stem from the uncertainty leaves our fate dangling in front of our eyes

  2. Anmol Raut

    Very resourceful. Iam sure this will help a lot of parents like me. Subscribed!

  3. shweta_raamanujam

    Omg! This is very new! I didn’t know about such a problem. Thanks for making us aware of such an important topic!

    1. Dr. Rahat Sayyad

      Do spread the word Shweta. And yes its pretty common and can be identified easily by parents

  4. Cindy Dsilva

    Very informative. My daughter would behave like this when she was a baby. Suddenly she would tighten her self and her face would become red. But I guess it was a phase or something else.

    1. Dr. Rahat Sayyad

      Hmmm. Sounds like breath holding spells. Very common in new born age group. Glad she got over it

  5. Shilpa Garg

    Thanks for this informative and enlightening post on Infantile Spasms. The acronym STOP perfectly shares the steps one needs to take when dealing with a child with Infantile Spasm.

    1. Dr. Rahat Sayyad

      Yes i loved how easy the acronym is. It makes actionable steps so easy to remember and perform.

  6. Tina Basu

    this is such a helpful post for moms. Identifying early always helps with treatment plans.

  7. Neha Jain

    Thanks for sharing this post it’s really informative and it’s good to more about it as many people don’t know more about it and don’t understand it

    1. Dr. Rahat Sayyad

      Absolutely and the lack of knowledge about medical emergencies as this, may cost the child.

  8. Dr. Surbhi Prapanna

    You are doing a great job dr. Rahat. With each post and podcast episode you come up with excellent and authentic information. Indeed infantile spasm is a disease that need much knowledge and awareness. Thank you so much for sharing expert opinion of Kary with is. It was really insightful.

    1. Dr. Rahat Sayyad

      Thank you dr. Surbhi. Such words of appreciation motivate me to such a great extent. ❤️❤️❤️

  9. mummatalks

    This is a very informative read. It’s very important for parents to be more aware and vigilant with their kids as If we overlook a situation, it can turn out to be a grave issue later on.

    1. Dr. Rahat Sayyad

      Absolutely. Infantile Spasms are a medical emergency and need immediate attention

  10. LifeCoachPreet

    My friend’s baby used to go through this and I have seen her struggle with it for the longest time. I am glad you shared an insight into this. This will definitely help all new parents. It’s a must read for all.

  11. Varsh

    Although infantile spasms aren’t too common it is important to know their symptoms to identify them. I’m glad you shared them in such detail and have partnered to share awareness about it.

    1. Dr. Rahat Sayyad

      In a country like ours with a booming population, one in 3000 kids get affected with it and that makes it pretty common. Also there is very less awareness about it even among the medical fraternity especially those working at grassroot level

  12. Ujjwal Mishra

    Covid is stressful for everyone specially for new moms who lack support. Your post is very useful. Sharing it with more people. Hope it gives help to many.

  13. Sandy N Vyjay

    Infantile spasms if not treated early on can have drastic repercussions on the health. This is a very enlightening and informative post, especially very useful for new moms.

  14. Infantile spasms seems seizures that cause a delay in development. These uncertainties during Covid times is seriously stressful for all.
    Great info.

  15. Bhawna Shah

    I heard about epilepsy in adults but didn’t know about this disease in infants. Quite informative post.

  16. I was unaware of the infantile spasms. I am taking away loads of information on it and shall share with new mommies too.

  17. Tina Basu

    this is such an important post for parents. early detection will be helpful

  18. Harjeet Kaur

    This 8s a very detailed post on infantile spasms.
    Hope no kid goes through this trauma

    1. Dr. Rahat Sayyad

      Absolutely Harjeet. Infact one in 3000 kids gets affected and in a country witth our statistics likes our and an ever growing population, this is pretty common

  19. Gurjeet Chhabra

    Very informative post. I am not much aware about it but this is really a serious problem which all mom should know about.

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