I wish to know if anyone can help me with what advice you can offer anyway.
My 7 year old son is being referred to neurology for test as he may have symptoms of Narcolepsy. He is always feeling tired, he does not drop off but tired never the less, he gets a good nights sleep but still tired through out the day. He attends school and the school is aware of what is happening him but he has not showed any sign of dropping of in class. He is one way or another showing negative behavior at home although he has many things to concentrate on to try and keep him busy. After speaking to our dr, and reading up on symptoms of this, it seems that he may have some sort of narcolepsy or something from the sleep apnea family. My concern is that my own father suffers from Cataplexy and I know that this can be genetic. As peace of mind I myself have asked my dr tyo refer me, just incase i have it. Thanks for any help and if anyone could please mail me at my inbox.
I'm sorry to hear that your son is having these issues. When my son was 7, he was developmentally delayed, had a hard time sleeping through the night and feel asleep at school often. When I was a child in 1st or 2nd grade, I can remember being woken up by the teacher, having lucid dreams (sometimes called night terrors) and sleeping more than my brothers and sisters. There is definitely a genetic factor in narcolepsy. Scientists have discovered the gene marker and you can be tested for the gene by a simple blood test. The definitive way to diagnose narcolepsy these days is to undergo a Multiple Sleep Latency Test (MLST) which is usually given by a sleep clinic. Your neurologist may be able to direct you to a reputable sleep clinic that tests and treats children with sleep disorders. There are many people in this forum who didn't get diagnosed until they were adults. Thankfully, you are taking a proactive approach to your son's sleeping disorder and will soon find answers and treatments that may help his general health and behaviors. Good luck! Coping
Hello, I was diagnosed with N a little over 3 years ago. I'm 34 years old and believe I've had it since a teenager. As a teenager I always took a lot of naps and slept longer hours. Due to the sleepiness I was in a depressed mood a lot because of the "down" sleepy feeling. At 22 I was diagnosed with sleep apnea but the CPAP machine never gave me any relief..only if I didn't use it I may get a headache and feel like I was more in a cloud. I used to sleep throughout the night as well and wake up in the morning feeling like I neve slept. I too was irratiable and cranky and didn't like to talk too much because I was so tired and had no energy. I complained of sleepiness to my doctor many times and then gave up for some years and they wanted to rule out sleepiness from depression, etc. I struggled for about 14 years, had numerous sleep studies and 2 MSLT tests. It was the second test that showed my diagnosis. A definite N diagnosis will show a person falling into REM sleep at least 2 times during the test within a certain amount of seconds. I fell into it very quickly 1 time but was given the N diagnosis due to my symptoms of excessive daytime sleepiness. I am fortunate that I do not have cataplexy. I started on meds 3 years ago as it was getting harder to go to work and to keep my eyes open. I used to fight my sleep all day long and the first med I tried did not do much for me. It was Nuvigil. The second one Adderrall XL has helped me a lot. I'm still limited to how much I can do in a day but i'm actually able to do things that I wouldn't have been able to without the meds. Since your son is 7 you have to be careful if meds are going to be prescribed because some will stunt the growth and have other negative effects in children. I hope your son gets the help and/or treatment he may need. Best wishes:)
I am sorry to hear of the trouble your son is going through, I can only imagine how difficult it is for you. I was diagnosed 2 years ago with Narcolepsy after many years of Doctors and misdiagnosis. Once diagnosed I was put on Nuvigil, and I had doubled the amount I was taking within a few months. Earlier this year I was looking to double the prescription again which made me start researching other options. For the last six months I have been on a low carb diet and slowly transitioning to gluten free. I have found this made an incredible difference in my life. Within a week I started feeling a difference, within a month I cut my medication in half. Since your son is so young I'm sure medicating him is a less than favorable option. Maybe looking into food allergies or insensitivities would be a worthwhile option.
Good luck and I hope you find some relief for your son soon :)
I’m sorry to hear about your son, my name is punkin and I was diagnosed with narcolepsy over 2years ago, but I just wanted to let you know when my son was 9yrs old I notice that he was so tired every morning when I wake him up to get ready for school, he would be tieing his shoe and falling asleep, he would brush his hair and be dozing off, I could walk out of his room for 2 mins and when I come back in he’s laying flat on his back sleep.so I thought he was hanging up after I had put him to bed,but after monitoring him one night I noticed he tossed and turned and he snored.so now I take him to his pediatrician and ask him to send my son for a sleep study at first he said no and I told him that I will take my son to a doctor that will send him, so he began to do the basic check up on him he checks my son pulse first the the dr ask me was my son playing and running around the room before he came in I said no he’s been sitting on the table the whole time I asked why, he stated his pulse is over 100 at this point he sends him for the sleep study and the results were astounding he was diagnosed with severe sleep apnea and he has to sleep on a cpap machine every night. The test showed my son stopped breathing 39 times in 5mins that was scary as heck for me. But my son is now 13yrs old and that machine has changed my sons life for the better he’s full of energy all day long and he is even able to play sports. He plays basketball. And like you stated about your son the tiredness never affected his grades in school, he has maintained A B honor roll every year. So I wrote this to you to encourage you that yes our kids are young and being diagnosed with these problems but there is still a light at the end of their tunnel with treatment. I pray everything works out for you and your son, and believe me they are allot stronger than we think they are.