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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Evaluation For Learning Disability Granted

It's been a long time, but the school district has finally granted my daughter's evaluation for a learning disability. It feels as if I've accomplished something amazing, which shouldn't be the case. When a student is absent from school 53 days and a parent isn't told about the Hospital Homebound program, or a student who normally gets A's and B's says she is struggling with her schoolwork and is getting D's and F's is ignored, something isn't right. The School District Made Mistakes When I did request an evaluation, it was unknown what my daughter's problems were. At first, I didn't get an … [Read more...]

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Tonsillectomy For Sammi

Sammi is having her tonsillectomy on June 1st. Finally after waiting for over a year, it's happening. First she was having too many infections and we had to keep putting the actual surgery off, then the sinus tachycardia started, then the narcolepsy was diagnosed. We have our pediatrician (we've been seeing the female partner) to thank for this. When I took Sammi to see her to discuss the narcolepsy, I mentioned that Sammi was having low grade fevers. She remembered about her large tonsils and adenoids, and took a look at them. When she considered the allergies, the sinus infections and that … [Read more...]

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