History

My daughter had trouble sleeping right from the start. She did not sleep for more than 20 minutes at a time for the first 7 months of her life. At 9 months old she was diagnosed with Transient hypogammaglobulinemia of infancy.  when we tested her for food allergies. This is a temporary autoimmune disease affecting the immune system. After she was about two years old, she rarely had health problems and most of her vaccines were "taking". She developed within normal limits for all milestones with the exception of some extreme shyness that she outgrew by kindergarten.

In third grade her thyroid was tested because she was constantly cold and would fall asleep every single time we entered the car, even if we were only in in for a few minutes.  She fell asleep incredibly fast and started complaining that she was getting up several times a night.  Nothing amiss was found with her thyroid. In fourth grade she started nodding off in the afternoons. By the end of fourth grade she was frequently spending afternoons asleep in the nurses office.  She also began to gain weight rapidly.

The summer before fifth grade she started falling asleep while eating and had a sleep study done in June. While at the first of three apointments, the doctor asked some standard questions and we were all surprised when she answered questions positively that were related to  cataplexy.  After the sleep study, we were not impressed with the doctor and requested a second opinion. We were sent to see a neurologist, who ordered a sleep deprived MRI. Boy, was that hard! That doctor suggested we see his colleague in another city.

In fifth grade she began taking scheduled naps instead of participating in PE, art and music. By January we finally got an appointment with a doctor who prescribed Provigil and diagnosed her with narcolepsy.  We noticed an immediate difference with the Provigil, however afternoons and evenings were still difficult. She began to experience obvious signs of cataplexy.  She would have to hold onto something if she started laughing hard.  She will sway standing up or sitting if she is tired and her eyes would roll back in her head. The rest of fifth grade she spent her afternoons attempting to stay awake and learned very little. Luckily, she's a bright girl and had understanding teachers who would encourage her to get water or take a walk. We also were frustrated to find that she had gained 60 pounds in 18 months.

Since May, she has been on a diet. She continues to swim daily, participate in cheer and dance several times a week and play outside with her brother and cousins. She has begun taking a class over the summer online so that she can attend school halftime this coming school year. She has increased her Provigil dose to 200mg a day and we are now considering a sleeping med to help with the disrupted sleep at night. The doctor has prescribed a stimulant for the afternoons, but we have been unable to find a pharmacy that carries it due to national shortages.  We are still working on her recognizing, accepting and responding to her body. She is stubborn and tries to push through the attacks.

We are determined to find a way for her to be successful doing whatever she wants to do.  We are so proud of her hard work and determination. Despite the past few difficult years, she remains on honor roll, has competed at the State Science Fair, and has participated in cheer and dance teams.

~Raising a Narcoleptic