Showing all results for Angelman Syndrome Sleep Medication Survey

Showing 73 surveys
Age Gender Diagnosis type Medication 1 Dosage 1 Medication 2 Dosage 2 Comment
13 M DEL+ Clonazepam 0.5 mg before bed Quetiapine 25 mg before bed Fourth drug combination to date - Still trying to find something that will let him sleep through the night, as well as take effect in something less than 4 hours.
24 M DEL+ Melatonin 6mg per night sustained release Nothing has worked 100% but the melatonin has worked well ***** goes to bed at 10:00 wakes about 4:00 to use the restroom and most often goes back to sleep until 6-8.
2 M DEL+ Acetazolamide 2.4 ml at bedtime Melatonin 3 mg 30 min before bedtime Right now he also takes 1 tsp of benadryl before bed but will stop after allergy season (Diamox is Acetazolamide Trade name)
11 M DEL+ Mirtazapine at age 6 and 65lbs - 20mg given 45 minutes before bed. At age 11 and 105lbs - 30mg given 45 minutes before bed. (Mirtazapine is trade name Remeron) Also taking Keppra (1000mg in am and 1500mg at bed) for seizures and Vyvanse (20mg in am) for ADHD symptoms.
13 F Clinical Clonidine 2 Clonidine(.1mg tabs) 30 minutes before bedtime all given at bedtime Melatonin 5mg 30 minutes before bedtime (Malatonin is brand name GNC)
7 M Imprinting defect Clonidine 2 .01 mg tablets about 40 minutes before bed. Child goes to sleep on his own and sleeps for 7 to 9 hours a night. Prior to we were lucky to sleep 3 hours a day. I hope this helps
6 F Imprinting defect Benadryl 50mg at bed time. Works after 1/2 hour. Works for 6 hours. Failed - Trazadone (10mg up to 100mg), Tranxene, Melatonin, Clonidine, Clonazepam, Chloral Hydrate, Hydro Chlorate. Lunesta, Ambien, Ambien CR (and numerous combinations of the medications above).
4 F DEL+ Melatonin 1 ml before bed For us, the most important thing was establishing a routine and giving her a chance to fall asleep by herself - and go back to sleep by herself if she wakes up with limited interference.
8 F DEL+ Trazodone 75 mgs, 20 min before bed Melatonin 3 mgs, not sure it helps much Also tried clonidine, which helped get her to sleep but not keep her asleep. Tried Remeron which improved sleep but are her ferociously hungry. Tried tryptophan, not sure if it helped.
11 M DEL+ Mirtazapine 37.5 mg at night about 1 hour before bed (Mirtazapine is trade name Remeron) Clonidine 0.1 mg at night about 1 hour before bed Child sleep very well at night usually 6-8 uninterrupted hours and wakes up well. Has also seemed to decrease seizure activity and tremoring
9 M DEL+ Melatonin Approx 0.3mg crushed OTC brand. Given half hour before bed with epilim and frisium (clobazam). Amazing results for first 9mths. More sleep, less seizures which left him more alert and with noticeable cognitive gains. More recently he is waking once a night and mostly goes back to sleep so still seems to be having some effect. (Melatonin is Duane Reade brand) I believe the lower the dose the better to ensure the levels do not become saturated (you need a peak to get effect). There is some scientific evidence out there for this.
20 F DEL+ Clonidine Started at .1mg just before bedat 8 yrs old. Eventually up to .2mg as she got older. She is 20 now and no longer takes it She was an extreme nail biter as long as I can remember. When she stopped the med she stopped biting her nails?! Coincidence or related?! Never know. Med worked well for a long time. Eventually routine and age she no longer needed. Good luck
4 M DEL+ Clonidine 0.1mg at bedtime.
11 M DEL+ Melatonin 3 Mg
2 F DEL+ Melatonin Half of a 3 mg tablet 30 min before bed. This worked so good when started two months ago she fell asleep within 30 min. of administering and slept for at least 6 hours. It seems now the effects are wearing off. She still falls asleep within 30 min. but only stays asleep around 4-5 hours on average.
9 M DEL+ Clonidine .01mg 30 minutes before bed with seizure meds. Sometimes ***** sleeping med stops working. We stop it for a few days and then start back; this almost always effective.
2 M DEL+ Melatonin .6mL before bed. In conjunction with a higher dose(in comparison to daytime dose) of sodium valproate and Clonazopam
5 M UPD Clonidine .075 mg 1/2 hour before bedtime. (I previously stated .75 mg, I meant .075. It's 3/4th a .1 mg pill Melatonin 3 mg 1/2 hour before bed He sleeps from 8:30 pm till 3 am, wakes up for a drink and back to bed until 6:30 am
7 M Clinical Clonidine .01mg per night right before bed time!
3 F UBE3A Melatonin Dose: 500mcg tablet, Trader Joe's brand; Given just before bed (works like a charm to put her to sleep) and again if she has a middle of the night wide-awake, up-out-of bed, awakening (does not always work to put her back to sleep). Levetiracetam Prescribed for seizures, but her sleep improved tremendously once she started. Three 100mg doses/day, one which is given at midnight.
6 F DEL+ Clonazepam .25 mg. I give it about midnight (not at bedtime). My angel usually goes to bed at 9 p.m. without a problem. It's STAYING asleep that's the problem. (Clonazepam is trade name Klonopin) Melatonin 1.5 mg: We take a 3 mg OTC melatonin from Kroger and cut it in half. Sometimes, if it's really late, I just give her 1/4 of the tablet. She chews it up without much of a problem. I say "Take your Candy." Nothing works thru the night. I can't remember the last time she slept 100% thru the night. I usually stay up til 2 am and then give *** her melatonin and pray she sleeps til 6 am. It usually lasts about 4 to 4 1/2 hours from the time I give it to her. It helps -- but since it's a hormone, I HIGHLY suspect it is causing her weight gain.
20 F Clinical Benadryl started off as 2tsp. increased over time by doctor to 2 Tbs. Given one hour before bed. (Benedryl used is dye free, sugar free, alcohol free) Trazodone 100 mg given at 7 pm. a neurological doctor told me in 2008 that if I'm getting 4-5 hours of broken sleep a night for my angel, that was the beatthT could be expected, even with meds.
22 F UPD Unisom 1 capsule 1/2 hour before bed Mesuximide 1-1/2 capsules - started this med many years ago to prevent startle seizures upon falling asleep (Celontin is Mesuximide Trade name)
6 M DEL+ Melatonin 3mg one hour before sleep time Angel used to sleep well but didn't fall asleep the past 2 months. Adding Melatonin restored a good sleep pattern.
11 F DEL+ Melatonin 1.5 mg about 20 minutes before bed and is taken with seizure meds which are topomax and clobazam (Melatonin is Natural Factors brand) Although melatonin is the only sleep med use, recently we had to use benedryl (10ml) for a bee sting and it knocked her out within 1/2 hour and she slept solid for roughly 3 hours afterwards.
8 F UBE3A Clonidine 0.1 mg Melatonin 5 mg
9 M DEL+ Clonazepam .25 mg
3 F Clinical Benadryl 2 teaspoons nightly approx. one hour before bed. (Benadryl is brand name or generic) Melatonin 3mg once every 3 days twenty min before bed. No more often as it seems to lose effectiveness. (Melatonin is Now brand)
10 M UPD Trazodone 50 mg, give just before bed. No other medications are given with this. Trazodone helps my son fall asleep. If I give it to him at 9 pm he will wake between 1-2 am. I need to sleep with him at this point otherwise he will wake up the house. The doctor said we could try a bigger dosage but, I am not willing to try it. My son can have hand tremors and I am afraid if I increase the dosage the tremors will get worse.
12 M Clinical Trazodone 150 mg. Melatonin 3 mg. Give meds at 7:00. Takes about 20min. to 1/2hour to kick in. Take to bed and he falls asleep almost instantly. Wakes up usually around 3:00 and goes to the bathroom but goes back to sleep either in his bed or the couch with Daddy in the recliner(routine). Then sleeps until at least 6:00.
21 M DEL+ Melatonin 1 mg of sublingual, which he chews, when he actually gets in bed. (Melatonin brand is Source Naturals sublingual) Occasionally, a second 1 mg will be given. More has not proven effective. Physical activity during the day is very important, as is pain control for any injuries.
19 M DEL+ Clonazepam 1mg tab 1-3 as needed to aide in sleep crushed via g-tube a half hour before bed. Melatonin 6mg crushed via g-tube a half hour before bed. He has been on this for about 2yrs and he sleeps pretty well unless he is wet or having issues swallowing.
7 F DEL+ Melatonin 2.5mg
17 F Clinical Acetazolamide 125 mg, late at night (10-11 pm) Diamox was introduced as an anti-convulsant. To our surprise, it also helps daughter go off to sleep. Melatonin didn't work. (Diamox is Trade name for Acetazolamide)
6 F DEL+ Melatonin 3mg about 30 minutes prior to bedtime. When she was younger, we started with 200mcg and worked up. This consistently makes her sleepy, as it is supposed to do. Benadryl 5mls. We used this for about 2 years every night. It didn't cause seizures. We were convinced it was working until we did a sleep behavior modification study and realized it only made us feel like we were doing something. Tried clonidine and it was a nightmare for her. At the max dose she slept for 15 minutes total. Opposite effect.
12 F DEL+ Melatonin 3mg 15 minutes before bed not in conjunction with other sleep meds. Give most nights but it only works about 4/7 nights Benadryl on occasion 15 minutes before bed instead of melatonin.. my daughter usually 4 out of 7 nights falls asleep within an hour of going to bed. In bed at 11pm and asleep by 12-1230am Likes to sleep late. Sometimes will be up for hours or all night.
7 M DEL+ Clonidine .1 mg at night Melatonin 3mg at night when we first tried clonidine at age 2.5 we had horrible results and it just made him super cranky with no sleep but 4yrs later when his sleep started getting disrupted again it worked perfectly in combination with Melatonin. His sleep was great from age 3 up until he was 6.5.
2 F UBE3A Melatonin 3mg at bedtime
16 M DEL+ Melatonin 1mg-jbb
9 F DEL+ Melatonin 6 mL We used Melatonin for about a year. We thought it worked initially, but then we stopped using it and realized that she slept just fine without it.
12 F DEL+ Clonidine 0.2mg 1 hour before bed. This is taken with Imipramine and Melatonin Imipramine 50mg 1 hour before bed. Taken with Clonidine and Melatonin 4 mg of Melatonin 1 hour before bed with Imipramine and Clonidine. We began medicating for sleep around the age of 4 1/2 and found this combination around the age of 7. She usually sleeps well.
21 F DEL+ Melatonin 1 mg given before bedtime.
8 F DEL+ Clonidine .1mg 1 hour before bedtime. No other sleep meds
2 M DEL+ Clonidine .2mg 1/2 hour before bed with clonidine Trazodone 50 mg five hours after going to sleep we give him clonidine to get him to sleep around 9 but he continues to be restless until at least 1am when we give the trazedone. trazedone seems to get him 4-5 (if we are lucky) hours of solid sleep.
2 M DEL+ Melatonin 2mg/day He sleeps all night all falls asleep way sooner than before It made effect day 2 after starting
3 M DEL+ Benadryl 6 tsp liquid He wouldn't tolerate that much liquid with all his other meds, so he takes 2tsp liquid and 2 tabs of regular benadryl. He takes this about 1hour before bed. (Benadryl is Children's Benadryl & Benadryl tabs) Clonidine 0.1mg tablet about 1 hour before bed time. He also takes a 3mg extended release tab of melatonin. 3 medications just for sleep every night before bed. And he's only 3 years old and not even 30lbs. Seems to metabolize medication quite quickly.
4 F DEL+ Melatonin 6 MG just before bed (Melatonin is extended release) I tried three other meds before I followed the sleep study results. These meds (Trazadone, Clonadine, Clonazapam) all changed my childs personality and stopped working over time (thus increasing the dose and leading to a bad cycle). From the results of the survey I now put her to bed at 9 PM (she does additional physical activity after dinner before her bath). I removed all electronics from her room. I purchased a tent that she sleeps in. We do have awakening 1 night a week - but a huge improvement over the past.
10 F UBE3A Clonidine .3 2 hours before bedtime
3 M Clinical Cyproheptadine 1.5 tsps at bedtime. This medicine is an antihistimine, but causes drowsiness Benadryl 1.5 tsps at bedtime Also give 6 mg of melotonin
8 F DEL+ Melatonin 6mg - 15 minutes before bed.
19 F Clinical Clonazepam 4 mg Also 4 mg clonazapam; 250 mg valproic acid at 8 pm Trazodone 75 mg before bed
7 F DEL+ Clonazepam 1 pill before bed also helps with seizure control (Klonopin is trade name of Clonazepam Zolpidem 5mg. 30 minutes before bed (Ambien is trade name of Zolpidem)
14 F UBE3A Clonidine .1 mg at bedtime. Melatonin 3 3mg capsules at bedtime in conjunction with clonodine mentioned above (Melatonin is brand name Nutraceutical Sciences)
13 M DEL+ Melatonin 3mgs - 30 minutes before bed
16 F UBE3A Melatonin 10 mg approx 1hour before sleeping (not given every night)
4 M Imprinting defect Melatonin 0.3ml half an hour before bed Medised which contains the same active ingredient as benadryl in the USA, sometimes helps. No other medication has worked. We are awaiting the results of a 48 hour EEG / sleep study.
6 M DEL+ Melatonin 4 gotas 30 mi urnas antes de dormir. (Melatonin brand is Melamil)
9 F Clinical Calcium/magnesium am and pm many seizure meds
13 F DEL+ Melatonin 3 mg time released This dosage worked well for a few months, but not working well at this time. She gets up 3-6 times per night from 9 pm to 6 am.
13 F DEL+ Clonidine .2 mg, 30 minutes before bed along with Alprazolam (Catapres is trade name for Clonidine) Alprazolam 1.125 mg, 30 minutes before bed along with Catapres Melatonin (time-release) was used for a few years in combination with the Catapras with some success but results deteriorated. Trazadone worked briefly but caused daytime agitation. Clonazapem worked moderately well but caused daytime side effects (most problematic was dizziness and motor instability with some lethargy early in the day).
1 F DEL+ Clonidine .075mg (or 3/4 of the .1mg tablet), just before bed. We also use a weighted blanket (very small - 2 lbs), a noise machine and we keep our daughter from taking long naps (one hour naps are her limit, though she can have two during the day, if she needs it). Melatonin was a DISASTER for us (she seemed to have anxiety/nightmares). We will NOT be going back to that. The combination above (clonodine plus sensory items) seems to work perfectly. She rarely wakes up at night now, and sleeps, on average, 10-12 hours. It's great. She used to average only 3-4 hours of sleep per night (for almost a year and a half).
4 M UPD Trazodone 1 pill before bed Benadryl 1 pill (30mg) at 1:15am
9 M UPD Melatonin 5.25 mg (1 3/4 of the 3mg tablets) just before bed. (Melatonin is Melatonex sustained release - Sunsource Brand) We keep him awake and give Melatonex at 10 PM. If he falls asleep and/or gets Melatonex any earlier, he wakes up and stays up in the middle of the night.
6 F DEL+ Melatonin 1 ml just before bed
22 M UPD Benadryl 12.5 to 25 mg Melatonin 10mg extended release
7 M Clinical Trazodone 75 mg at night Melatonin 3mg at night
6 F DEL+ Melatonin 5mg
4 F DEL+ Niaprazine 1 dose poids (Brand name is Nopron) Melatonin 4 cachets (Brand name is Circadin)
13 M DEL+ Clonazepam .5mg at bedtime He sleeps very well from 10pm to 8:30am on most nights but will have a few nights in a row when he wakes up in the middle of the night or very early in the morning, about once every 6 weeks.
9 F DEL+ Melatonin 4 ml just before bed (Melatonin brand: Kidnapps) Started at 9 yrs old. 1st medication for sleep. Increase in constipation almost immediately after starting Melatonin. Was then prescribed Movicol daily. Toilet trained day & night but regressed to bed wetting after starting Meltonin (maybe because of deeper sleep?)
12 F Clinical Clonidine 0.01 Milligrams, an hour before bedtime as needed. She only uses this medicine twice a month. She usually sleeps between 10-12 hours with no medication.
14 F Clinical Trazodone 300 mg given 15 min before supper. Clonidine 0.2 mg given 15 min before supper
16 F DEL+ melatonin 3 mg


Statistics

Males 33
Females 40
Average age 9.64
Youngest 1
Oldest 24
# using 1 med 43
# using 2 meds 30

Diagnoses

DEL+ 46
Clinical 12
UPD 06
UBE3A 06
Imprinting defect 03

Medications

Melatonin 43
Clonidine 20
Benadryl 09
Trazodone 09
Clonazepam 07
Mirtazapine 02
Acetazolamide 02
Calcium/magnesium 01
Quetiapine 01
Niaprazine 01
Imipramine 01
Cyproheptadine 01
Zolpidem 01
melatonin 01
Alprazolam 01
Mesuximide 01
Levetiracetam 01
Unisom 01

Med combinations by diagnosis

Clinical Acetazolamide 1
Benadryl + Melatonin 1
Benadryl + Trazodone 1
Calcium/magnesium 1
Clonazepam + Trazodone 1
Clonidine 2
Clonidine + Melatonin 1
Cyproheptadine + Benadryl 1
Trazodone + Clonidine 1
Trazodone + Melatonin 2
DEL+ Acetazolamide + Melatonin 1
Benadryl + Clonidine 1
Clonazepam 2
Clonazepam + Melatonin 2
Clonazepam + Quetiapine 1
Clonazepam + Zolpidem 1
Clonidine 5
Clonidine + Alprazolam 1
Clonidine + Imipramine 1
Clonidine + Melatonin 1
Clonidine + Trazodone 1
Melatonin 22
Melatonin + Benadryl 2
Mirtazapine 1
Mirtazapine + Clonidine 1
Niaprazine + Melatonin 1
Trazodone + Melatonin 1
melatonin 1
Imprinting defect Benadryl 1
Clonidine 1
Melatonin 1
UBE3A Clonidine 1
Clonidine + Melatonin 2
Melatonin 2
Melatonin + Levetiracetam 1
UPD Benadryl + Melatonin 1
Clonidine + Melatonin 1
Melatonin 1
Trazodone 1
Trazodone + Benadryl 1
Unisom + Mesuximide 1

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