Hello there,
I think that there is no way that your baby is suffering from the narcolepsy. First of all babies sleep a lot! And when I say a lot I believe that average is around 20 hours! So first of all you are lucky one because your baby is sleeping and you can get some rest too. I am saying this because my sister’s child is sleeping a lot less than it is normal for such a young baby and she can’t get any sleep at all.
Also it would be wise to get yourself a little bit better informed about babies because you will be panicking for no reason on every little thing. good luck in raising your child J
I realize that the original post is pretty old, but I wanted to put my two cents in after reading the last response. First of all, there are no ignorant questions -- asking them is the only way to learn, and when it comes to your children, educating yourself is critical. Infant narcolepsy, while rare, is not unheard of. If you are having concerns, you should definitely talk to your pediatrician. The amount of sleep varies greatly between babies. As for the 20 hours mentioned above, it would depend on the age of that baby. 20 hours may be normal for a newborn, but is excessive for MOST (not all) babies older than that. According to the chart on babycenter (and all of the sites will have different opinions, but won't be too far off of this chart), babies should average:
Age Nighttime Sleep Daytime Sleep* Total Sleep
1 month 8 8 (inconsistent) 16
3 months 10 5 (3) 15
6 months 11 3 1/4 (2) 14 1/4
9 months 11 3 (2) 14
12 months 11 1/4 2 1/2 (2) 13 3/4
18 months 11 1/4 2 1/4 (1) 13 1/2
2 years 11 2 (1) 13
3 years 10 1/2 1 1/2 (1) 12
*Note: number of naps in parentheses
Again, if you are ever questionning any of your baby's behaviors, follow your instinct and always talk to your pediatrician. That's what they are there for!
Hey,
My friend is experiencing this same thing. Is there anyway you can give her your contact info. Someone found your comment and pasted it to her story and gave us the link to this thread. Your stories sound similar and the doctors can't seem to diagnose her. Her story is below:
Facebook Family and Friends we need your help! This is a very long post, but we are in search of answers for our baby girl! I am making this status public so we can reach as many people/doctors/specialist as possible! My daughter Brielle is 12 months, born at 39 1/2 weeks, healthy with no complications.
On September 19, 2016 she had her 1st episode while at daycare. She went down for a nap and the teachers could not wake her for over an hour, we were transported via EMS to MUSC. The 2nd episode happened later that evening at MUSC during the EEG. The EEG was normal it did not show that she was having seizures. The EKG was normal, no abnormalities with her heart. All labs were normal. We were released 2 days later with no answers. A sleep study was conducted it showed a very mild case of sleep apnea, no CPAP machine needed just Flonase. Fast forward to November 30th the 3rd episode happened at the daycare, the teachers were unable to wake her for 10-15 minutes. We were readmitted to MUSC for the 2nd time on November 30th, but this time more thorough testing were done. The 4th episode happened right after we were admitted on 11/30/16, and was witnessed by a neurologist. She was playing and just passed out and went to sleep. The doctors were unable to wake her for 10-15 minutes. The 5th episode happened on Thursday night 12/1/16, she was drinking from her sippy cup, and just fell asleep. The doctors were unable to wake her for an hour in a half. The 6th episode happened on Saturday 12/3/16, she was playing with her toys and fell forward and went to sleep. The doctors were unable to wake her for over 20 minutes.
During these episodes she's in a coma like state. She is not able to feel anything, they put in her IV she slept through. They pricked her heal she slept through it. We tried using a cold compress that didn't work. She has to come out of it on her own. When she does come out of it she's very drowsy and disoriented. During these episodes she continues to breath, heart rate is normal, as well as all of her vitals, she is just unresponsive.
All labs thus far normal, we are currently waiting on the results from the genetics/metabolic labs. She had a CT scan of her brain (normal), MRI scan of her brain (Normal), 2nd EEG(Abnormal ) it showed a slowing in the back of her brain, 3rd EEG(Normal). An ultrasound was done of her stomach it showed that she had intussuception, but that was fixed with an air enema. They performed an upper endoscopy, that was normal. ENT did their testing, they found enlarged adenoids, but it is not linked to her sleepiness.Glucose normal, Thyroid labs normal.
We were told that there are no known cases that describes what's happening to Brielle. The team of doctors did say she has a very rare condition, they just don't know what it is. They did think it was infant narcolepsy but they concluded that's not what it is. We were released today with no answers and no diagnosis.
If anyone has experienced any of the symptoms above or know of someone that has this condition please reach out to me. If you are a Doctor or specialist that has treated a patient with similar symptoms please reach out to me. I can be reached via Facebook. Please share my status, please help it to go viral! Brielle can't be the only one in the world that this has happened to. Signed Desperate parents looking for answers! Dee P. Heyward
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