Hui theng's Story

The Journey of Warrior Erisya in Epilepsy

My daughter start having epilepsy since 3 months old.

Her first time happen was after the vaccine of Pneumococcal. That time she start vomit after 30 minutes she had fitting for about 40 minutes. That time I carry her and run to the clinic nearby as fast as I could as the time when she fits, she are not responding and couldn’t breath with eye point up and lips turn blue colour. This is her first fitting in life and the beginning of epilepsy journey.

I had no idea what is epilepsy until my daughter had it. Because of my daughter I did all the research 1 could to better take care of her. Now my daughter is 9 months old. She having Epilin syrup 2ml per day. Taking care baby with Epilepsy is not easy as my daughter have sleep disorder too where lack of sleep will be a trigger for fitting.

Everyday I have to make sure she have enough rest. She very hard to fall asleep so I would carry her and walk around in house to make her fall asleep. I will keep fanning her to make sure she won't feel hot as the weather will be a trigger for fitting too. Besides that i also stop her for being too excited while playing with her siblings as when she gets too happy the fitting will come.

Others than that, my baby girl also couldn’t eat certain fruits like watermelon and banana. She also couldn’t get scared or get shocked so I have to always telling her little sister not to scare baby.

My baby girl couldn’t consume heaty food too as it will be trigger for her to have seizure. Thus, she couldn’t even eat baby biscuit or cereal as these baby food seems to be too heaty for her.

Not only that, she also cannot stay alone as she will have seizure suddenly. As full time mother and taking her alone, I will bring her along when doing housework or go to toilet. When she sleep I will lay beside her too. Because of that, it made me unable to cook sometimes. During midnight, I will stay awake just afraid she will fittings while I fall asleep. As she just a baby she wouldn’t know what to do when fitting.

She cannot cry too long too as crying too long will made her fitting. So whenever she begin to cry I will carry her to walk around just to calm her down. Some people said this will made her become more demanding as she knew when she cry her mother will surrender. But from my sights of view, as long as things I do can reduce her from fitting, I will do. I know every time fitting will cause her brain shrinking, I will try my best to prevent her from it.

The hardest part is when she had to admit hospital due to fitting, she will become crying baby. She is very afraid of doctor and nurse. Whenever nurse comes over to check her blood pressure and fever. She will cry and refused the nurse from touching her. The vein detained needle on her hand will became her toys or food too as she will try to bite it or pull it out from her hand. Thus I will be very busy from calming her down as she will keep crying when I not allowed her to play or eat with the needle on her hand.

Still remember when her having her MRI scan to find out the caused of seizure, she have to start fasting since 5am morning and doctor say have to keep her awake until 11am. That morning, she keep on crying because of starve and tired. I carry her to walk around and keep distract her to made her forget about her hunger. My heart also breaking when looking she cry and in pain but I was unable to help her or reduce her pain. That morning, we cried together.

Although taking care my daughter with epilepsy is tiring. But when every time she smile, her smile will melts my heart and that will keep me feel energize to go along this long journey with her. For me, any person with epilepsy is a warrior, the best warrior.

The journey are still very long for me and my baby girl to go, and yet she will stay strong to made it through and so do I.

By Choo Hui Theng

March 2021