Families That Inspire: The Hieb Family
● By Hood Magazine
What is narcolepsy?
Narcolepsy is an autoimmune neurological sleep disorder that most often presents itself in childhood, adolescence, or young adulthood and lasts a lifetime. Four major symptoms associated with narcolepsy are excessive daytime sleepiness, sudden muscle weakness triggered by strong emotion (cataplexy), hallucinations, and sleep paralysis. Other symptoms can include poor quality of sleep, automatic behavior, and difficulty focusing and remembering. The effect of narcolepsy on quality of life can be compared to Parkinson’s disease and epilepsy, and there is no cure.
When did you first find out about your child's diagnosis? How did you decide what to do next?
After numerous tests and treatments over nearly six months, we had eliminated a lot of things that Madi did not have, but were yet to have her diagnosed. Early on and throughout this time of searching for the unknown, we had suggested to various medical professionals that a sleep study be performed on Madi because one of the symptoms she was suffering from was not sleeping well during the night. Some of Madi’s other symptoms kept the doctors thinking that she had a movement disorder. At the time our doctors didn’t believe a sleep study would reveal a diagnosis, so other tests and treatments were performed.
During this time Madi was not getting better but actually getting worse. After a visit to our primary physician, we asked again if he could please order a sleep study. He agreed, but we had to have a referral through yet another specialist. The test was finally ordered and we received some paperwork in the mail to fill out prior to the sleep study. One of the questions on the paperwork asked about cataplexy, which was one of Madi’s symptoms. Gina called the sleep center immediately and asked why this was on the questionnaire. The sleep center told us it was a symptom of narcolepsy. Gina did some researching online and came upon a video a family in Great Britain had posted that gave us a very clear answer to the cause of Madi’s symptoms. We submitted this information to the doctors she was seeing, and they confirmed that they now believed she was suffering from narcolepsy with cataplexy after viewing the video. A sleep study and MSLT were performed to confirm the diagnosis.
Through the various researches we did, we realized that we needed to get Madi to a pediatric sleep specialist who was well informed and had experience in the area of treating children with narcolepsy and cataplexy. We received a referral from one of the doctors in Sioux Falls to a specialist at the Mayo Clinic in Rochester, MN.
What was your family's course of action?
Upon Madi’s diagnosis, we tried to learn as much as we could about narcolepsy and cataplexy. We felt pretty alone at first, not knowing anyone with this condition. But after lots of thought and prayer, we reached out to some families we had found through blog posts and social media. Being able to get advice and just hear that other families are having the same day to day struggles that we were having was comforting. Many people with narcolepsy try to hide the fact that they have the condition to avoid getting made fun of or being treated differently or unfairly. We have been very open and up front about Madi’s diagnosis. There is very little knowledge about narcolepsy in the general public and even in the medical profession. So we want to increase awareness so people with narcolepsy don’t feel like they have to hide in the shadows. We continue to see the sleep specialist at the Mayo Clinic often for follow-ups. We have been very blessed to find such a knowledgeable and caring physician to care for our daughter.
What role did your child's school/teachers play?
From the first conversation we had with Madi’s school, and every day since, Harrisburg Explorer Elementary has been nothing but supportive, compassionate, and accommodating. Gina called and explained Madi’s situation last year before school started. Madi was not the same little girl they had seen at her kindergarten assessment a few months prior. And the hard part was that we did not have a diagnosis or an explanation of why she had changed. Her symptoms would make it hard for her to get in a full day at school. She would fall asleep on her desk or even during lunchtime. Throughout the year as we learned more about her condition and began treatment, the support from the school staff continued. Madi’s Kindergarten teacher particularly stood out. The care and compassion she demonstrated toward our daughter was more than we could have ever expected. Given all that Madi went through during her Kindergarten year, her teacher played a major role in helping Madi make the most of each day of school. Madi’s Kindergarten teacher was a big help in organizing the awareness day we had at the school. All the kids and staff wore green in support of Madi.
Are there any resources you recommend?
There are two organizations devoted to Narcolepsy Awareness. Narcolepsy Network promotes awareness and hosts an annual conference each year that allows people to attend to learn more about Narcolepsy from doctors and others who are affected by it. This year’s conference will be in Denver, CO in October. We will be attending the conference this year. A way that Narcolepsy Network has helped out our family in promoting awareness is the organization assisted us in getting an Executive Proclamation from the state of South Dakota, making March 7, 2014, Narcolepsy Awareness Day. They helped up find out how to request the proclamation and who to contact at the governor’s office.
Wake Up Narcolepsy promotes awareness along with raising funds that are given directly to doctors who specialize in narcolepsy for research. Our family has also joined with this organization and with their help we had a Narcolepsy Awareness day at Madi’s school. Much of the research that is happening would not be possible without the fundraising efforts of Wake Up Narcolepsy.
What advice do you have for other parents?
Our biggest piece of advice for other parents is to be an advocate for your child. It seems like a simple statement, but parents need to trust their instincts when they know something is wrong and follow the gut feelings parents have about their children.
Secondly, be persistent to ensure your children receive the best medical care possible. Our medical professionals we have are great. But not all of them are specialists in every health condition known to affect people. Search until you find the answers, even though you will more than likely feel like giving up. Conditions like narcolepsy often go misdiagnosed or even undiagnosed completely. We were fortunate to receive a diagnosis in six months, as many people spend years trying to figure out what is wrong.
UPDATE: Saturday, March 7th has been recognized by the Governor of South Dakota as Suddenly Sleepy Saturday, a Day for Narcolepsy Awareness. See it by clicking here.