Nearly 1,200 infants every year are diagnosed with a rare seizure disorder called infantile spasms, yet many health care providers have never heard of this disease. There is a great need for awareness to help parents, caregivers, and providers to understand the signs and symptoms. Infantile spasms present as seizures that occur in infants under age 1 and can cause catastrophic, permanent damage to a child’s developing brain. Even more frightening, infantile spasms are often subtle enough to be easily overlooked by both parents and health care providers. Prompt diagnosis and treatment are critical but are challenging because the condition can be mistaken for normal baby movements or other disorders that don’t demand urgency.
I’m helping raise awareness of infantile spasms during Infantile Spasms Awareness Week, December 1-7, to help parents, as well as physicians and other health care providers, know about this disease and treatments. There’s even an easy-to-remember acronym to help STOP infantile spasms:
- See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
- Take a video: Record the symptoms and talk to your doctor immediately.
- Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
- Prioritize treatment: End spasms to minimize developmental delays.
Together with leading child disease advocacy organizations and parent advocates, we’re sharing information about infantile spasms so parents, physicians, and nurses will know the signs to help STOP IS and help find a cure!
Awareness is so critical because treatment options are available to improve babies’ quality of life. In fact, clinical trials going on right now are looking into new treatments to stop these seizures. Noah, a baby from Virginia and current infantile spasms clinical trial participant, was diagnosed in utero with a rare disorder that often leads to infantile spasms. His parents understood the severity of infantile spasms and quickly enrolled him in the trial. With early intervention and the incredible advancements in clinical treatment options, Noah is a thriving 8-month-old on track for normal development. We want to hear about more stories like Noah’s.
To do so, help me spread the word about the signs of infantile spasms during Infantile Spasms Awareness Week using the hashtag #ISAW2019 or visit isweek.org. Together we share hope; together we can STOP IS!
Mommy Paveen says
Hi my son now 6month I just to know that he had IS. He is in treatment now. Don’t know how much the treatment will help him. Plz pray for my son. Thank you.
Fatima Torres Torres says
I had ever been told about infantile spasms. I think this is something people should be notified about at the hospital.
Tony Platz says
Thanks for the info my daughter just had a baby in July I will have her be aware.
Jaime Prideaux says
Wow, I had never heard of this before your article. Thanks so much for sharing this information. We can never know enough about our health!
Jenn@Engineermommy says
Awareness is so important. I have never heard of this specific type of seizures, but it’s so important to know what to look out for.
Farrah Less says
I am a first time mom for a baby who is due in December. Your post is an eye opener , makes, make me worried a little bit but very helpful.
Kathy says
I had never actually heard of this until now. I’m so glad I was able to read up on this. Thank you for sharing this so more can know about it.
Victoria @ Giveaways 4 Mom says
Thanks for spreading the word about this. As a parent of three, I was even unaware of this condition.
Lynndee says
Honestly, I have never heard of it until now. Thank you for raising awareness about it. I sure learned a lot from this post.
Chef Dennis says
I am not really aware of this before but it’s really a great thing that you shared this very important information. This will help spread awareness especially for mommies and health care providers.
Destany says
I had never heard of this before! My son is 15, and I’m constantly amazed at the medical advancements since his birth. This information is vital to all new parents!
Beth says
I never heard of infantile spasms before. My son and his wife are expecting their first baby next spring. In addition to sharing this with them, I’ll also share it on social media. It seems like something every parent and caretaker should know about.
Terri Steffes says
I have been in early childhood education for over 35 years and I haven’t heard of this. I am so grateful for the information and for the memory jogger of STOP.
Theresa says
Thank you for sharing this important information. I have actually never heard of infantile spasms before, so I’m glad that you’re raising awareness!
Allison says
Wow, I wasn’t aware of infantile spasms. Thank you for the informative and instructive post.
Jamie H says
Wow, as a mother of 3, this is the first time I’ve ever heard of this! Sounds like raising awareness is pretty important!
Pam Wattenbarger says
I had never heard of infantile spasms before. I’m glad you are raising awareness to help.
Amber Myers says
This is great to be aware of. I admit, I didn’t know about this before I read your post. Now I know what to look out for.
cait says
wow i never knew about this before so im glad you were able to bring more information about on this topic
Rena says
I have never heard of this before! How scary. When my son was little (under a year) his fever spiked real high and his eyes would roll back in his head. He did this three times and it was terrifying. The weird thing is it wouldn’t last at all. Within two hours the fever would be gone completely.