hdufort
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Hi! I am new here. My 6-years old son was recently diagnosed with temporal lobe epilepsy. I’ll give the details below.
My son has had very poor sleep quality since he’s 1 years old (before that age it’s difficult to tell). He would wake up screaming or moaning multiple times every night, and he also moves his legs a lot during sleep. At first we were coping with that, and assuming it was a normal problem due to moving him in his own bedroom.
But it kept going, every night. We first mentioned this problem to a doctor when my son was 2 1/2 years old. The doctor bluntly told us that we should have more authority and leave him crying, for the whole night if necessary, to "break" his attachment. So we tried this for weeks, without any success. Friends and family started commenting on how poor our parenting skills are.
So the sleep problems kept going and going, and we were becoming very exhausted. He would start screaming/moaning and kicking every hour, from 11pm to 5am sometimes. Going to bed was a stressful experience, we knew what would happen during the night and couldn’t help.
Then we had a new family doctor. She noticed how exhausted we were, and started working on our son’s case. The first hypothesis were acid reflux (since the sleep problems started 4-5 hours after meal) so we tried antiacid medication, with limited success. Then she wondered if my son’s pedaling and feet rubbing movements were related to joint pain, e.g. rheumatoid arthritis; we tried anti-inflammatory drugs, without much success.
My son’s health was degrading as well, due to the lack of efficient sleep -- he wasn’t participating to activities at the daycare and was very irritable as well. The educator started isolating him, which created self-esteem problems (which took lots of efforts to correct afterwards). We also consulted a psychologist, who freaked out when we showed her a recording of my son’s sleep problems (she expected the usual "kid doesn’t want to go to bed" story). She told us she couldn’t do anything.
At some point, I started reading about sleep problems on the Internet and built several decision grids to understand what could cause such sleep disturbences: RLS, sleep apnea, temporal lobe epilepsy, PLMD, etc. My doctor didn’t take this very seriously, and told me that I think too much. Events would later prove her wrong.
We kept having random medical appointments to rheumatologists, ENT doctors, etc. until they figured out something totally unrelated to his sleep problems: he’s 100% deaf in one ear! This finding was devastating to us, but it also motivated all the specialists to figure out what was wrong. We met with geneticists, and had multiple blood tests, CT scans and MRI to find some clues. They found nothing specific, except some minor white matter anomalies in the brain.
Then we had to wait several months for our sleep clinic appointments. We tried combining melatonin, antiacids and blowing air in his bedroom (the fan’s noise seemed to help). Shortly before his fifth birthday, my son’s sleep started to improve (well superficially). He didn’t scream or moan as much, although he started grinding his teeth a lot during the night. He required a 12-hours night of sleep, and was still very tired in the morning. Hopefully he started school in a better shape because of the improvement in his sleep, and we started recovering (we are self-employed and lost 25% of our revenue and some clients, due to lack of sleep). We finally had our first 2 sleep clinic appointments, first for checking his oxygen level during sleep (which was normal), then to check his sleep patterns during 1 hour and then flashing strobe lights. Everything was normal.
There was a 1-year delay for the last sleep clinic appointment, but in the mean-time we had several appointments with a pediatrician who’s also the province’s leading expert in child sleep. She started working on the case and also investigated our son’s possible asperger’s or anxiety disorder. We finally had the "complete" sleep clinic test last month, a complete night with EEG and camera monitoring. The results were very surprising, I’d even say they were disturbing.
Our son is a "sleep oddity". He has not one, but FIVE sleep disorders.
- RLS (Restless Legs Syndrome), in which the legs tend to jump and move, which caused micro-awakenings (41 per night)
- Obstructive sleep apnea, in which he stops breathing for a few seconds (or chokes) because his throat or airways are blocked (14 per night)
- Central sleep apnea, in which the central brain misreads the blood oxygen saturation and shuts down respiration (7 per night)
- Temporal Lobe Epilepsy, which causes the yelling, moaning, hand clasping and confuse awakenings at night (7 per night)
- Acid reflux, which causes incomfort and reduces sleep quality
So this is where we are -- we need to manage all these problems at once with prescription meds and food supplements. For the epilepsy the doctor’s starting him on a small dose of valproic acid. For RLS, iron+vitamin C supplements. For obstructive sleep apnea, we have appointments to see if the pharynx is too soft, or if the adenoids are blocking the way, or if he’s having sinusitis. For central sleep apnea I don’t remember the medication name, but it’s "on hold" -- my wife is freaking out.
Our family doctor will receive the report tomorrow, and I’m pretty sure she’ll call us!
I’ll have several questions about Temporal lobe epilepsy. Thanks in advance for your kind help.
Hugo
My son has had very poor sleep quality since he’s 1 years old (before that age it’s difficult to tell). He would wake up screaming or moaning multiple times every night, and he also moves his legs a lot during sleep. At first we were coping with that, and assuming it was a normal problem due to moving him in his own bedroom.
But it kept going, every night. We first mentioned this problem to a doctor when my son was 2 1/2 years old. The doctor bluntly told us that we should have more authority and leave him crying, for the whole night if necessary, to "break" his attachment. So we tried this for weeks, without any success. Friends and family started commenting on how poor our parenting skills are.
So the sleep problems kept going and going, and we were becoming very exhausted. He would start screaming/moaning and kicking every hour, from 11pm to 5am sometimes. Going to bed was a stressful experience, we knew what would happen during the night and couldn’t help.
Then we had a new family doctor. She noticed how exhausted we were, and started working on our son’s case. The first hypothesis were acid reflux (since the sleep problems started 4-5 hours after meal) so we tried antiacid medication, with limited success. Then she wondered if my son’s pedaling and feet rubbing movements were related to joint pain, e.g. rheumatoid arthritis; we tried anti-inflammatory drugs, without much success.
My son’s health was degrading as well, due to the lack of efficient sleep -- he wasn’t participating to activities at the daycare and was very irritable as well. The educator started isolating him, which created self-esteem problems (which took lots of efforts to correct afterwards). We also consulted a psychologist, who freaked out when we showed her a recording of my son’s sleep problems (she expected the usual "kid doesn’t want to go to bed" story). She told us she couldn’t do anything.
At some point, I started reading about sleep problems on the Internet and built several decision grids to understand what could cause such sleep disturbences: RLS, sleep apnea, temporal lobe epilepsy, PLMD, etc. My doctor didn’t take this very seriously, and told me that I think too much. Events would later prove her wrong.
We kept having random medical appointments to rheumatologists, ENT doctors, etc. until they figured out something totally unrelated to his sleep problems: he’s 100% deaf in one ear! This finding was devastating to us, but it also motivated all the specialists to figure out what was wrong. We met with geneticists, and had multiple blood tests, CT scans and MRI to find some clues. They found nothing specific, except some minor white matter anomalies in the brain.
Then we had to wait several months for our sleep clinic appointments. We tried combining melatonin, antiacids and blowing air in his bedroom (the fan’s noise seemed to help). Shortly before his fifth birthday, my son’s sleep started to improve (well superficially). He didn’t scream or moan as much, although he started grinding his teeth a lot during the night. He required a 12-hours night of sleep, and was still very tired in the morning. Hopefully he started school in a better shape because of the improvement in his sleep, and we started recovering (we are self-employed and lost 25% of our revenue and some clients, due to lack of sleep). We finally had our first 2 sleep clinic appointments, first for checking his oxygen level during sleep (which was normal), then to check his sleep patterns during 1 hour and then flashing strobe lights. Everything was normal.
There was a 1-year delay for the last sleep clinic appointment, but in the mean-time we had several appointments with a pediatrician who’s also the province’s leading expert in child sleep. She started working on the case and also investigated our son’s possible asperger’s or anxiety disorder. We finally had the "complete" sleep clinic test last month, a complete night with EEG and camera monitoring. The results were very surprising, I’d even say they were disturbing.
Our son is a "sleep oddity". He has not one, but FIVE sleep disorders.
- RLS (Restless Legs Syndrome), in which the legs tend to jump and move, which caused micro-awakenings (41 per night)
- Obstructive sleep apnea, in which he stops breathing for a few seconds (or chokes) because his throat or airways are blocked (14 per night)
- Central sleep apnea, in which the central brain misreads the blood oxygen saturation and shuts down respiration (7 per night)
- Temporal Lobe Epilepsy, which causes the yelling, moaning, hand clasping and confuse awakenings at night (7 per night)
- Acid reflux, which causes incomfort and reduces sleep quality
So this is where we are -- we need to manage all these problems at once with prescription meds and food supplements. For the epilepsy the doctor’s starting him on a small dose of valproic acid. For RLS, iron+vitamin C supplements. For obstructive sleep apnea, we have appointments to see if the pharynx is too soft, or if the adenoids are blocking the way, or if he’s having sinusitis. For central sleep apnea I don’t remember the medication name, but it’s "on hold" -- my wife is freaking out.
Our family doctor will receive the report tomorrow, and I’m pretty sure she’ll call us!
I’ll have several questions about Temporal lobe epilepsy. Thanks in advance for your kind help.
Hugo
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I am sure not only your wife is freaking out...