I Have Amazing News!

What amazing news to share! My daughter, Sammi had her second sleep and nap study recently and the results show that she does NOT have Narcolepsy!! We are thrilled! And this is going to bring about positive changes for Sammi as we work with the neurologist, who did the new studies and her school, who is working with her IEP. What the Sleep and Nap Studies Told Us The studies were done months after Sammi had her tonsils and adenoids out. The doctor wanted to be sure that she was completely recovered before proceeding with the studies. The Sleep Study - Polysomnogram showed normal sleep … [Read more...]

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Waiting For Genetic Testing Results

Waiting for genetic testing results is nail-biting scary. Most genetic testing also takes a long time, so that adds to the worry. Recently my daughter, Sammi has undergone genetic testing for Narcolepsy and for Long QT syndrome. Both tests take about 8 weeks to get results. The Narcolepsy genetic testing can have some false positives, but we decided to have it done. My husband and I feel that if it comes back negative and her next sleep study (after her tonsillectomy) comes back normal, we're on the right track. Then we'll see if Narcolepsy and other sleep disorders can be ruled out. We'll … [Read more...]

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Sleep Disorders In Children

We are learning a great deal about sleep disorders in children. Back in January, my daughter was diagnosed with Narcolepsy after 2 sleep studies and a nap study. Since that time, the sleep doctor has been unable to find a medication to treat this condition that my daughter is able to tolerate. She has trouble focusing, is sleepy during the day, lacks motivation to do anything, has trouble with her school work and is part of the Hospital Homebound program even now after school has finished. To put it lightly, this sleep disorder has affected her in all areas of her life. Second Opinion My … [Read more...]

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Narcolecspy In Children

I'm learning something new again about health issues for children and not by choice. My daughter Sammi has been diagnosed with Narcolepsy. In a way I'm happy to have one answer to the troubles she's been enduring. In other, I'm scared beyond belief. Diagnosis of Narcolepsy In Children After Sammi's first sleep study, we were told that she was sleep deprived, but that there were no concrete answers found from the study. So she was scheduled for another sleep study and a nap study also known as a Multiple Sleep Latency Test (MSLT). Between the pediatrician, the pediatric cardiologist, the … [Read more...]

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What Is A Nap Study

If your child has to have a nap study, don't think your doctor has gone off the deep end. There really is such a test. In medical terms it is known as a Multiple Sleep Latency Test (MSLT). When we found out that Sammi is sleep deprived after her sleep study, the sleep doctor suggested that Sammi have another sleep study along with a nap study. Sammi isn't getting enough deep sleep and her daytime sleepiness as observed by me and my husband and other family members along with her difficulty concentrating and her grades dropping, is making a huge impact on her life. I was told that Sammi … [Read more...]

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