Tackling the Many Challenges of Narcolepsy
Vera was a normal 10 year old starting the 5th grade when she started sleeping excessively. There was a sudden change in her behavior. We took her to the doctor and she was diagnosed with obstructive and central sleep apnea. She stopped breathing about 35 times per hour due to the obstructive apnea and about 7 times per hour from the central apnea. Obstructive apnea caused her muscles to relax and block her airway; the central apnea happens when her brain doesn’t tell her to breathe.
She had the surgery that was recommended for the obstructive apnea. Referred to as UPPP, the doctor removed Vera’s tonsils, uvula and some of the soft palate. This surgery did not help Vera at all – in fact it made the condition much worse. After surgery her obstructive apnea episodes increased to 72 times per hour. Vera now uses a CPAP machine to treat her sleep apnea.
Two years later, despite successful CPAP treatment, the excessive daytime sleepiness persisted. A new doctor and another sleep test (including a daytime Multiple Sleep Latency test) revealed that Vera also had Narcolepsy with Cataplexy. Narcolepsy is the uncontrollable urge to fall asleep and cataplexy is the sudden loss of muscle control due to experiencing any type of strong emotions. Some times Vera would collapse to the floor just from laughing.
If the sleep disorders were not enough, we found a tremendous lack of understanding by the school faculty and administration. Narcolepsy is hard to explain, and many people do not understand the uncontrollable urge to sleep. It was, and still is, hard to convince them the child they saw at school is the same child I saw when she came home. They have assumed when the bells ring at the end of the day Vera is able to stay awake and do everything the other children can do. She cannot.
Vera is now 15 years old and we have not been able to break this type of misunderstanding that she could stay awake if she really wanted to. We have made some advances with the school, but not enough. Everyday is a challenge for Vera.
We have been asked to increase the amount of medicine she takes so she can stay awake for one certain class. When she sleeps through a lecture and instructions for work that needs to be done, she is still held responsible for the information. We have asked that Vera be allowed to take naps if needed at school. This met with resistance, but she could take a nap if it was at a certain hour of the day. The place that was provided for her was at the back of the special education room on the floor with other children in the room.
We have asked for some computer based courses that could be brought home and also for a paraprofessional to help Vera during school time. At this time the school is considering it. At the same time we are being told that we just can’t have kids sleeping at school. At this time she is being served on an IEP (Individualized Education Program) under a questionable diagnosis.
Vera is a wonderful artist and has a lovely sing voice. Despite all of the problems she has had with school, she refuses to give up. She has the courage and she is my hero. When we found there was a medicine named Xyrem that was having wonderful results treating the cataplexy, we were so excited. Unfortunately the excitement did not last long. We were told because we live in the state of Oklahoma it was not available to us. After finding that our legislators had to vote it into law, we started our long journey to try to change things. Vera was invited to appear at our state capital to speak to the Senators and tell them why this medicine needed to be approved.
We spent two days walking the hallways of our capital and talking to Senators. Vera experienced so many cataplexy attacks, I did not know how she could continue, but she did. Her work in lobbing for Xyrem paid off. The bill passed 100 to 0 in the House of Representatives and 48 to 0 in Senate. Many have told us that the bill may not have passed without Vera’s hard work.
I was there but it was Vera alone that made the impression. Had I been the speaker, I feel sure the outcome could have been much different. I am so proud to be the mom of a hero and Vera truly is one.