At 7, Eira experienced her first seizure attack.
There were no signs. At least to our untrained observation skills.
Diagnosed with global developmental delay, we had a list of things to worry about including recurring pulmonary infection, low muscle tone, failure to thrive, speech, genetics and other areas of development. We never anticipated a seizure attack.
We should have.
Then, a week ago, it was just sudden. Her body dropped limp and unconscious from a sitting position. Her skin turned pale and her face blue-ish. For parents like us, who have been a frequent flyer to the ER, that was our cue to another ER rush.
She was already non-responsive but her eyes were open and seemed wide awake.
We were clueless that she was having a seizure attack, but she did not exhibit body convulsion. We did not suspect a seizure episode because we never knew until now that there are different types of seizure. Some seizures like the type Eira experienced does not necessarily have to be dramatically convulsive with rapid, violent shaking movement of the whole body.
What we should have realized early on is that a child with developmental delays is at greater risk for seizure attack.
As we drove to the nearest hospital, I kept on tapping her back and reaching inside her mouth for any object she might have swallowed.
Big mistake.
I could have put her in greater danger by forcing her tongue down. Thankfully, ignorance towards proper response to seizure attack did not cause her condition to get worse.
And all it did to her was help release a quick burp. But no one should take chances like that.
A brief look into treatment history
Prior to her first seizure episode, we’ve been treating her recurring lung infection, fighting fever due to the infection. We were also working on her nutrition to improve her weight gain.She lost so much weight fighting pneumonia after pneumonia.
The first seizure episode occurred on the 10th day that we were giving her antibiotics. We’ve been working with her pulmonologist to strengthen her lungs, prevent triggers and fight infection.
But we could not point to a single cause that would have provoked her seizure attack. She had no irregular activities, no fever, and had her meal two hours earlier.
Post seizure side effects
In the ER, her heart rate was elevated (although she’s always been tachycardic, which means her heart beats faster than normal). They also heard crackles from the lower right lung (back and front areas).These are all typical observations after a seizure episode, says her pediatricians.
Soon after we took her home, she was feeling lethargic. She seemed exhausted and rested all night. It’s another common response following a seizure attack, mostly among those who had generalized seizure attacks.
These details are important to specialists; and if you are about to see a neurologist, you might want to keep notes of details to share with your doctor for proper diagnosis and optimized treatment.
First neuro consult and initial diagnosis
We had our first neuro consult four days after her seizure following the referral from her pulmonologist. Eira’s first seizure attack was not repeated up to the time of this writing.I have no clue if it ever recurs.
Or, if she is having seizures during sleep as what studies1 suggest considering that she had not been achieving developmental milestones.
During our first neuro consult, we discussed Eira’s medical history:
Eira was diagnosed with global developmental delay and partially diagnosed with RSS (Russell-Silver Syndrome). The Magic Foundation dedicated in the research and support services for families affected with growth disorders describes this syndrome:
Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.2
[I will talk more about RSS in the next blogs...]
After our narrative of the incident, Eira's neurologist suspected a possible generalized seizure. She needed to undergo an electroencephalogram (EEG) test to confirm the initial diagnosis.
What is generalized seizure?
A seizure episode is “a sudden, abnormal electrical activity in the brain”3 and there are different classifications for seizure. There are seizures that affect just partial part of the brain and there are types that affect both sides.Eira’s seizure affected nerve cells on both sides of the brain and classified under generalized seizure. This suspicion was confirmed by the EEG results.
What happens during seizure?
Sudden bursts of electrical activity in the brain can cause different responses depending on the affected parts of the brain.For Eira, I have no way of telling what it's like in terms of thoughts and feelings because she has speech delay and communication is a bit of a challenge.
I can only discuss the physical reaction of her body during the attack. It was like dropping in slow motion; and while it seems she is wide awake, she is unresponsive and unaware of her surroundings. The visible change of skin color turning her pale all over and her face changing to blue-ish tone hints for real trouble.
It was the most frightening part for a first time experience of seizure attack.
Eira just had one seizure episode to the best of our knowledge. Those who experience recurring seizure may observe that each episode occurs under similar circumstances.
Watch the video published by Pfizer discussing seizure with Dr. Freda Lewis-Hall, Chief Medical Officer of Pfizer, and Dr. Travis Stork. It’s a helpful resource understanding what happens during a seizure and what you can do if you see someone having one.
If you watched the video, you probably caught the key takeaways—
- Stay with patient until seizure ends
- Ease them to the floor so they won't fall
- Loosen anything around their neck
- Keep their airway clear by turning them to one side if possible
- Don't stop their movements
- Don't force anything into their mouth to hold the tongue down
Looking back, I regret forcing her mouth open because I was worried she might have swallowed something causing her to choke; but not realizing that I could have caused more danger.
Final Thoughts
I am still horrified learning that my daughter just had seizure.
But we can only move forward from here and I am more inclined to understanding seizure and how we can control and manage it than to remain petrified that it is indeed happening to our daughter.
We started Eira on a three-year treatment program that could extend up to five years depending on her response.
Every seizure episode has risks for brain impairment, not to mention it is life-threatening. Medical intervention is necessary to treat seizure and prevent any further impairment to the brain.
I’m committed to further learn and understand seizure. You can email me for questions related to seizure or any other neuro-related query and join me again in the next blog for answers from our neurologist.
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References:
1Fliesler, Nancy. 2012, May 4. “When a child loses milestones, consider sleep EEG studies. Retrieved online on November 12, 2017 from https://vector.childrenshospital.org/2012/05/when-a-child-loses-milestones-consider-sleep-eeg-studies/
2Magic Foundation. “What is Russell Silver Syndrome. Retrieved on November 13, 2017 from https://www.magicfoundation.org/Growth-Disorders/Russell-Silver-Syndrome/#1
3Medline Plus. Seizure. Retrieved on November 16, 2017 from https://medlineplus.gov/seizures.html
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Recommended Books:
Seizures and Epilepsy in Childhood: A Guide
Description: An award-winning book used as the standard resource for parents in need of comprehensive medical information about their child with epilepsy.
Epilepsy in Children: What Every Parent Needs to Know
Description: From a leading neurologist, experienced nurse practitioner, and registered dietician comes the complete guide to help your child achieve and maintain a high quality of life.
Treating Epilepsy Naturally: A Guide to Alternative and Adjunct Therapies
Description: Drugs commonly used to treat epilepsy have some extremely harmful side effects. This book is an empathetic, practical, empowering look at treatment options, lifestyle choices, and ways of living well.
Children with Seizures: A Guide for Parents, Teachers, and Other Professionals
Description: This concise, accessible handbook for families, friends and carers of children with seizures provides all the information they need to approach seizures from a position of strength.
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