By Liana Jacob
MEET THE little boy with severe narcolepsy that left him sleeping between TWELVE and EIGHTEEN HOURS A DAY even AT SCHOOL but wasn’t diagnosed for a YEAR despite his mother showing concerns to doctors.
International antiques dealer and auctioneer, Victoria Underwood (37), who is originally from Bridgend, Wales, but now resides in Tennessee, USA, first noticed something was wrong when her son, Barron (9), began sleeping over longer periods throughout the day and he would suffer from night terrors and hallucinations.
She immediately took him to a paediatrician, who told her that it was probably due to his growing pains he had from having restless leg syndrome (RLS), a long-term disorder which causes a strong urge to move the legs.
He was then referred to a neurologist who told Victoria and her husband that the cause of this was due to not being taught to self-sooth as a baby and has since been unable to get himself back to sleep.
Over the next few months he was sleeping regularly all day every day, even at school where his peers had expressed their confusion over why this was happening. Victoria decided to do some research of her own when she came across the condition of narcolepsy and decided the symptoms of this were very similar to her son’s.
She requested for him to take the narcolepsy test, where he fell asleep in under 90 seconds during each of his five naps revealing that he has severe narcolepsy. The doctor admitted that due to his age and severity of his condition, he is unique to their practice and they had never seen a case like his before.
He has since been taking medication which has helped reduce his symptoms and his teachers have agreed to educate his peers about his condition to make him feel less insecure about his condition. His headteacher has even permitted him to have naps in her office if needed.
“The onset of his narcolepsy was so unexpected and sudden and seemingly without any kind of trigger that it was a weird thing to try diagnose,” Victoria said.
“He was seven, I believe, and had spent the night at a NYE lock-in at a local high school; on New Year’s Day he came home and slept all day and we thought he was just worn out from being up all night but as the days went on the sleeping continued.
“It was literally like he was fine one day and not the next but he didn’t have any kind of trauma that we think could’ve triggered the symptoms.
“When we started realising something was wrong, he seemed to be sleeping anywhere from twelve to eighteen hours every day.
“It ruined our plans as a family because we have another son and we would want to go do things as a family, but he would just be so grumpy and tired that he would flat out refuse to leave the house.
“It’s been a rough journey for over a year, mostly because doctors wouldn’t listen to me when I said that I thought he had narcolepsy.
“His paediatrician told me that it was probably growing pains, but the leg pain continued for longer than I thought it should have.
“We were then sent to a neurologist who told my husband and I that basically we had done everything wrong when he was a baby and that he never learned to self-soothe and didn’t know how to get himself back to sleep, to which I thanked him and never went back.
“So, for a few months we just lived with him sleeping all day and we just got used to the fact that as a family, we weren’t going to be able to go out on the boat or go out for the day because Barron would need to sleep.
“I started doing my own research and came to the conclusion that he had to be narcoleptic and compared to the other options that was the best-case scenario.”
Victoria admits that his condition has affected the whole family and that Barron has gained over 2st increasing his weight from 3st 8Ibs to 5st 10Ib.
Despite their struggles, she says that his school has been very supportive throughout his journey, helping ease his symptoms wherever possible.
“We started going to a sleep centre who told us, after two sleep studies, that he has sleep apnoea and needed a CPAP mask which we got but didn’t seem to make any difference,” she said.
“They kept trying to tell me it was sleep apnoea until I got mad and told them that I wanted the narcolepsy test done pronto.
“We went for the narcolepsy test and he fell asleep, into REM sleep, in under ninety seconds in all of his five naps which showed ‘severe narcolepsy’.
“When we went for the results the doctor admitted that due to his age and severity that he is unique to their practice.
“I got the feeling that they didn’t really know how to handle him and that’s why they kept just telling me it was apnoea. That plus it’s fairly rare for little ones to be diagnosed with it.
“He was napping multiple times during the day and during a handful of his classes. His little friends started to notice that he was always asleep and not getting in trouble.
“They didn’t understand why they would get in trouble for doing it and say things like ‘why am I in trouble? Bear sleeps all the time.’
“His teachers read a children’s book at circle time which explains what narcolepsy is and why narcoleptic have to take meds etc.
“The kids now understand what Bear goes through every day and they will even remind him at lunch to go take his medicine.
“They let us know how he was acting every day and anytime he fell asleep. Some of the teachers allowed him to sleep and the head of school said that he could nap in her office if he really needed to.
“Once we got the diagnosis Bear was afraid of what his friends would think of him having to take medication, so the teachers took all of his friends and had a circle time discussion about who takes vitamins etc. so that he didn’t feel like the odd one out taking a pill every day.
“It took the doctors an entire year of testing and me throwing a wobbly to get him a diagnosis. Once we did the narcolepsy test the doctors have all agreed that his is a ‘special’ case and a severe one at that.
“I was relieved to get the narcolepsy diagnosis as the alternatives with similar symptoms were much worse options.
“He now takes Adderall to stay awake; I am not at all a fan of medicating children but in his case it was one hundred percent necessary. My advice is to keep pushing for answers and keep looking for a doctor that will help.”