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Looking for insight - currently in search of diagnosis for toddler
Wed, 12/04/2019 - 18:01Topic: Parents & Caregivers
Hello -
Our three year old has had two episodes in which he goes very limp (no convulsive activity), his eyes roll straight back to the top of his head then his eyes shut, and his breathing becomes very slow and shallow.
The episodes each lasted about 5 - 10 minutes.
He is completely unresponsive during episodes, almost lifeless. The only stimulus he responds to is rescue breaths, though nothing conscious. He just moves a little after the breaths. His pulse is strong and fast during these episodes. During the first one, his blood oxygen (tested at ER) was very depleted and he had to be intubated.
The neurology work up thus far has been essentially negative. He's had a MRI, bunch of blood tests and a 48-hour EEG with video monitoring (the EEG showed some background slowing, but the doctors thought that that was driven by sedative drugs he was on at time of test).
Cardiology examined his EKG and did an echocardiogram, both negative.
At the time of both episodes, he had a pretty heavy cold with chest congestion. So a pulmonologist has also examined him, but has been unable to draw a link between breathing issues and these episodes.
Because he had a cold at time of both episodes there are some doctors who suggested it might be a febrile seizure, but no measurable fever was present so that has been more or less ruled out.
We've scheduled a follow up EEG, but our neurologist is not convinced this is a seizure.
Any thoughts/recommendations?
Hi, Thank you for posting, we
Submitted by Anonymous on Thu, 2019-12-05 - 11:16
Hi, Thank you for posting, we understand this must be very scary and upsetting for you all to experience. We cannot determine if these episodes you describe are seizures or not. It’s important that you all are continuing to follow-up with your son’s healthcare team to review these episodes further and if he experiences any changes in behaviors, side effects and symptoms. For information regarding second opinions, or assistance finding a specialist near you, please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistSeizures can take on many different forms and affect different people in different ways. Learn more about seizures, here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizureYou all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking these episodes, but recording his medical history, setting reminders, managing medications,side effects, behaviors, moods, symptoms and other health events that may affect wellness, which can be shared with his healthcare teamAdditionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline