Special thanks to Julie Lam-Iida for writing this blog post!
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My name is Julie Lam-Iida, a mother of 3 wonderful boys and a wife to a fabulous husband. Let me start my story…I knew in my heart of hearts that I was meant to be a mother. Not knowing when the time came when my husband and I were ready to start a family…I couldn’t. I had gone through countless diagnostics and procedures to find out why I couldn’t get pregnant and why I wasn’t able to sustain my pregnancies. I was so devastated. The fact that I was a woman and could not give the gift of life. I felt incomplete, tremendous guilt and a failure as a woman to not be able to bear children. My husband supported me through these dark years. The year I had my second miscarriage, a few months later I was pregnant again! This time we were cautiously optimistic and were praying quietly in our own way that higher power will be able to help us become a family plus 1.
The months went by as we cherished these good and bad moments of pregnancy, we were able to give birth to our precious boy for many years, I kept my names of potential boy and girl names. The one name that was always on the top of my list was Ethan. We named our little guy Ethan Kenji. He brought and continues to bring us so much joy in our lives. With all his imperfections, he was OUR perfect little boy!
When he was 7 years old, he was showing intermittent signs of some odd behaviors where in some evenings and on occasion when he was playing soccer. He would freeze, stop in his tracks, arms and hands clenched and sometimes will walk himself sideways off the field, and have this look of fright. We took him to the pediatrician and expressed our concern, initially thinking it may be cardiac issues. We went to Kapiolani Medical Center for Women and Children in Honolulu to consult with a Pediatric Cardiologist. The results of his assessment were negative. Later in the year we planned a family trip to San Diego, Lego land, and Disneyland then he on occasion would show similar signs. Once our vacation was done, we went back to our Pediatrician and suggested we attain a neurology consultation. Back to Kapiolani hospital for EEG and back to Hilo for a MRI, then back to Honolulu to meet with our Pediatric Neurologist. Then it was confirmed Ethan had seizures on the right parietal lobe of his brain. We were relieved to find out he had an actual diagnosis, BUT at the same time it was devastating. Next question was “What next?” and “What does this all mean for Ethan?” He was diagnosed with “Seizure Disorder”, but not knowing what type of seizures he had.
Now, he is 8 years old has been through a lot since being diagnosed. Trialing seizure medications, combination of different meds, which did not help him to achieve his “seizure–free” goal. Right after the school year ended, Ethan was hospitalized for his new medication to be infused via IV at Kapiolani Medical center, following multiple blood draws to check his Dilantin levels where his number of tablets would have to be adjusted almost every other day to maintain his therapeutic level. Over a 2-3 week period he started to show signs of welts, constant high fevers, and swelling to his face and eventually his condition progressed to where he had to fly to Honolulu with my mom (along with his brothers) to Kapiolani Hospital to be admitted. Erwin and I were making arrangements to fly from my training class in Maui to Honolulu (to meet my boys) to admit Ethan to the hospital.
Ethan was finally admitted. His condition worsened, not only with his lab levels with his blood and organs, but his skin on his lips where they were dry, cracked, bloody, lesions within his mouth, tongue, and throat leaving him not being able to open his mouth to drink, perform oral hygiene, and not being able to eat without pain or his lips ripping and bleeding. He was in the hospital for 8 days and at least 3 days with no food and not being able to open his mouth. He stopped talking and look so defeated. This was the lowest point of his life. At one point he actually started to cry out “I am going to die!” as the nurses were trying to start a new IV site. I cannot even tell you how much pain I had down to my soul to see him in this state! As I am writing this I brings back so many raw emotions. To feel absolutely helpless …HELPLESS for your child. I couldn’t take his pain away; I could not help him heal fast enough. His little body and he not fully understanding what’s happening and why him? How do you explain this to your young child?
While experiencing this with my son, I had to stop asking “Why him, why our family, and what did we do to deserve this suffering?” I had to tell myself, I need to be proactive and productive to better understand my son’s condition, how to create awareness first with people that he will come in contact with…school, Kempo, etc. I had gone through phases of denial, the “Why’s”, anger, fear…Now, I had to be strong and focused for the sake of my family and Ethan. Our role as a family to support each other, educate and train my younger boys to help and not be afraid when his brother experiences his seizures. It is true, one parent did say during our first support group with our neurologist ‘their siblings are getting the best first hand education about seizures and it will also teach them to be empathetic to others who have physical challenges d/t their medical condition(s).’ I have to say that my husband has been my rock, without him to lean on I would be a wreck. My other children, Aiden (7 now) and Ian (5-still in training) have seen Ethan’s seizures enough to not be afraid, but able to help him stay safe during his episodes.
I am grateful that we were able to seek out the Epilepsy Foundation of Hawaii (EFH) in Honolulu for resources and support during our second year journey with Ethan’s Epilepsy. Kathleen Stofocik, the Executive Director of EFH and Jessica Garlock were invited to my boys’ school in Hilo to conduct a school wide assembly, a presentation to Ethan’s third grade class and also a training session with faculty regarding variations of seizures and first aid. They played an intricate part with creating a start to Epilepsy Awareness in our school and for Ethan. I had a lot of positive feedback from the children, most who came into contact with Ethan, who are able to help emotionally support him and also can recite “Stay Calm, and Call for Help” in addition to other key first aid points. I was also impressed that they discussed bullying and identifying seizures as a medical condition and those individuals who have seizures are NO different than you and I.
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We need more education and awareness regarding epilepsy. Together we NEED to get individuals out into the open to seek support with one another. I know the Epilepsy Foundation of Hawaii will be a strong support for our community. It has been and will continue to be our support for our family.

Julie Lam-iida

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