CHLORAL HYDRATE UPDATE from original poster - Mothering Forums
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#1 of 13 Old 12-24-2007, 04:06 AM - Thread Starter
 
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Jeez. I had no idea this would be such a hot button.

#1. My son wakes anywhere from 5-12 times a night, and will sometimes take as much as two hours to get BACK to sleep after waking. He doesn't take a bottle, and can only fall asleep by nursing (not rocking, bouncing, nothing, even if someone else does it), if you gently hold him while he cries, he escalates and will self injure. He is almost twenty months old and it has been this way since his peaceful homebirth. (He is my fourth child).

#2. He has had a few seizures and tremors, and has self-injurious behaviors. He has no ability to self soothe (except for self hitting, head banging, and self biiting).

#3. My first three children's pediatricians were the Sears'. We moved to L.A. and our pediatrician was Dr. Fleiss, but we transferred to Children's Hospital L.A. when my son was in the hospital (to provide continuity of care with the pediatric staff/neuros/geneticists) and because we have an HMO now (Fleiss does not take HMOs). Our pediatricians were actually trained in part by Dr. Fleiss, and are considered some of the best in the country. I have spoken to several doctors on staff at Children's Hospital, and ALL said that considering our situation, they had no problem with the Chloral Hydrate. The dose for sedation for an MRI is 10 mg. They were prescribing between 1 and 2.5 mg.
They all assured me it was a VERY safe drug, and had a high threshold for toxicity. Of course, I am always skeptical of the medical field...but we were desperate.

#4. We have tried aromatherapy, vestibular stimulation, weighted blankets, various books, routines, white noise,benadryl, and melatonin. I don't have huge faith in bach flower remedies. He doesn't appear to have any allergies at all. It is possible that he is being awakened by petit mal seizures, and probable that his sleep issues are arising from neurological or metabolic issues which he is currently being worked up for.

#5. For the last two nights, we DID go ahead and try the Chloral Hydrate. The first night we tried it at 1 mg. It took him one hour to go to sleep, he slept for three hours, and then was up and wanted to party. We tried it last night at 2.5 mg. It took him two hours to fall asleep, and he woke up about eight times. We have concluded (perhaps to my secret relief, as I wanted sleep but felt uncomfortable medicating my child), that he has a paradoxical reaction to chloral hydrate (makes him wired instead of tired). This actually ended up being useful info, because this would be used for his MRI ( and my daughter had this reaction to it before she had dental surgery as a two year old (and then was administered more nitrous than they would give a 250 lb man, and still wouldn't go to sleep, and I begged them to do her surgery with a local).

So. We aren't using it anymore. I don't have any idea what to do next. We are low income at the moment, and can't afford expensive treatments.

But I am certainly open to suggestions, as there are usually two-four nights a week I get ZERO sleep, and the other nights I usually get between 2-4.

Thanks, Mamas.
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#2 of 13 Old 12-24-2007, 04:25 AM
 
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Well, my question is, why have they not ordered VEEGs and sleep studies.

As to their claims that chloral hydrate is safe. Um ok.
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#3 of 13 Old 12-24-2007, 04:49 AM
 
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My son has horrible sleep issues as well. he sleeps three hrs at a time 2x a day, so a total of 6 hrs. I would push for a sleep study. Maybe there is something they will be able to tell that is causing the sleep problems and go from there...
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#4 of 13 Old 12-24-2007, 05:13 AM
 
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I
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#5 of 13 Old 12-24-2007, 06:18 AM
 
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Wow, I don't know how you do it. I hope the neurologists can figure out if it's the seizures.

I also would suggest a sleep study.

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#6 of 13 Old 12-24-2007, 07:47 AM
 
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I certainly didn't want you to feel "attacked." I think people here got concerned because CH is a major drug to be giving such a little person. No one here questioned the severity of his sleep issues, IIRC. We don't question your situation or the hell that is sleep deprivation, or your judgment/experience as a mama. It was the doctor's rec to jump straight to such a strong drug with out any sleep studies, etc., that made us concerned. I'm sorry you feel we were attacking you. That certainly was not the intent.

My ds was awake every hour to hour and a half the first 9 mos. of his life, and we are still dealing with sleep issues to this day as his 4th birthday approaches (albeit not NEAR what you're dealing with...). The "breakthrough" for him with sleep was the Wilbarger brushing protocol and intense occupational therapy/sensory integration therapy.

Is your ds in OT? If not, it sounds like he definitely qualifies.

I do understand what it's like to be so sleep deprived that you're barely hanging onto your sanity and your marriage. I do. I totally understand that, I've been there. I hope you get some answers, and fast.
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#7 of 13 Old 12-24-2007, 11:04 AM
 
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Mama, there are multiple separate issues. I too hope you understand our concern regarding the drug risk, we understand that you are doing everything you can for your son and family. Sleep deprivation is hell. Basically, my ds awakened every 50 minutes for the first two years. Only nursed to sleep also. But, I only had one child. I can not imagine the distress that you have with the constant 24 hour demands of four children.

I'll repost my conglomeration of sleep ideas. But, you may have tried many of them. I am running out the door. But, want to share whatever may possibly help. Mostly, the No Cry Sleep Solution helped me to ADD sleep associations and over about 6 weeks++ ds became able to resettle during his light sleep cycle with just shusshing and heaviness of my hand giving him the body contact on his chest. It was a long process of introducing the Pantley pull off method. (removing the nipple from his mouth)

The main thing that helped was eliminating wheat. I'm guessing, it is your 18 month old with the wakening and most allergists are not too impressed with testing this young. As hard as it is, I'd eliminate all wheat, dairy, casein and potentially gluten from both of your diets. The wheat is highly associated with frequent night wakening and restlessness. It is a chemical effect in the brain, damages the gut and affects the immune system and nutrient and micro nutrient absorption for some folks. Dairy is highly associated with the sensory seeking behaviors, head banging, repetitive physical impact.

Quote:
We have experienced a lot of challenges with ds's night wakening
through the years. Here are a bunch of ideas that I have accumulated.
Some work at different times, some are now obsolete, some are routines
for us. I hope something helps you all find more restful sleep.
Apparently, Kurcinka has a new book "Sleepless in America", which is
supposed to have some more ideas. I am not sure how consensual her
suggestions might be though.
http://www.amazon.com/Sleepless-Amer.../dp/0060736011

Our major issue stems around food intolerances which affect our son's
behavior and disturbs his sleep. We have mostly identified and
elminiated them. You might check The Feingold Diet on-line for
specifics. But dairy (including casein and whey) causes him to be
aggressive and less able to process information about other people's
needs and boundaries. Artificial colors red and yellow and high
fructose corn syrup and foods naturally high in salicylates also cause
hyper type behaviors and loud vocalizations (loud noise, loud voices,
loud forceful talking). If any of these are consummed late in the day,
he has more trouble falling asleep and has increased night wakening.
Wheat used to disturb ds's sleep, also.

Offering less to drink late, after 6 or 8pm might help some children.
And I have heard that dairy before bed is highly correllated with
night waking and night bedwetting. Soy seemed to disturb ds from
settling and resting for long periods as well. A protein food helps
our son settle for the night, like peanut butter and some OJ. Sugar
seems to hype some kids up. Obviously avoiding caffeine, chocolate. We
generally don't consume chocolate after 3-4 pm, if we can avoid it.

We use an aromatherapy called "Peace & Calming" which helps all of us
settle down for the night. It is part of our nighttime 'atmosphere'.
http://www.aroma-essence.com/catalog/peace-calming.html I put a couple
of drops on his feet or back, or on my wrists, and cuddle ds and he
will settle. Another thing that ds still at 4.5 liked was getting in
the sling and being held closely when he was overtired, but not
wanting to sleep. The chest pressure helps to center him. Bouncing,
rocking and swinging help to soothe too. I have also used Melatonin
(herbal) recently after a few late nights so that I would get right to
sleep. I have also used White Chestnut, a Bach flower remedy which
helps 'when thoughts go round and round in your head'.

Another thing that I found recently, is to be sure to get some
sunlight during the day at regular times to enhance the biorhythms and
hormones. And dimming the lights earlier in the evening helps
melatonin production, apparently. We have also tried melatonin
supplementation about a dozen times when we have had inadvertant days
of food intolerance exposure disrupting our sleep patterns. Melatonin
is great at helping our son get to sleep. If he has that second wind
and winds back up, he can be up for hours and hours. Apparently,
melatonin levels are low in hyperactive and autistic children. But,
there are some hormonal and immune system issues associated with its
use. So, we are very reluctant to rely on it. We've also noticed that
if it is given to get to sleep, he wakes up after 5 hours or so and
has a hard time getting back to sleep.

Rescue Remedy liquid or RR cream helps when everyone is too exhausted
to be quiet and settled. The cream helps you both. Outdoor play in
daylight helps our son sleep more soundly. A familar video helps.
Creating a routine of sleep associations helps. Certainly not
immediately but over time. Cuddle, blanket, lovey, specific chair,
song, video, rock, sling, pat, shussh, night time story. Car rides as
last resort. Caution they become habits too easily.

Cod liver oil (essential fatty acids) is supposed to have calming
factors too. Ds LOVES Nordic Naturals' peach flavored cod liver oil. I
heard that calcium in foods or supplements might help. Lavender helps
to soothe and calm. Especially in bath water or as a lotion or rub.
And transitions, strange places, or busy overstimulating
outings/activities energize and disturb our son from settling for at
least 2-4 hours after returning. He seems to need to process all the
going on while doing some familar free play before he can stop and get
quiet enough to fall asleep. So, we try to avoid exciting stuff in the
evening. Dh coming home late seems to delay ds from winding down for
the evening also. He seems to be waiting for him.

I have heard that Epsom salt baths have a calming effect due to the
magnesium in them. And it is available at chain pharmacies. It
apparently has a detoxifying effect also. Have iron levels been
discussed? I am ambivalent about trying iron supplements for our
little guy due to toxic potential. But from what I have read, iron
deficiency is related to hyperactivity/restlessness. I believe it was
Magnesium, Calcium, Zinc and Iron which are attributed to
restlessness. I've heard the best thing is to get some magnesium
citrate powder and take 3 - 4 times a day for a while. We've been
using Natural Calm for magnesium supplementation and it seems to help.

The No Cry Sleep Solution helped us to create additional sleep
associations. Now ds will just cuddle his lovey, I give him a pat and
a shussh and we both go back to sleep.
Quote:
Ok, here are the rest of my tricks up the sleeve. LOL Another old post
about nipple weaning, AKA the Pantley Method.

Ds woke every 60-90 minutes too for the first 18-21 months until I
read No Cry Sleep Solution. I understood the idea of getting the
nipple out of his mouth but the reality was quite a bit harder. It
took almost three months for this to succeed. At times, I figured
trying to change seemed so much harder than just letting him nurse to
sleep every 60-90 minutes all night long. But I kept at it for one
week and found that several times in the week he DID fall back asleep
with out the nipple. And I swear it had never happened before NCSS.
So, that gave me some hope. Then, the second week it happened only
several times and again I felt hopeless. And sleepless because at the
same time I was doing MORE sleep associations which were just making
me MORE awake and MORE tired.

Oh, how I wished that I had done the MORE sleep associations when he
had been an infant. But I didn't have the energy or the desire not to
just peacefully nurse him to sleep. That worked and we both loved it.
Until, I was so sleep deprived that I needed sleep more than I wanted
to just keep waking to nurse him back to sleep. Of course, we co-slept
or I'd have died of exhaustion well before 18 months. But it wasn't
that ds wasn't just dozing peacefully back to sleep, *I* wasn't dozing
back to sleep despite exhaustion and probably due to the self talk of
"I want to sleep! I don't want to wake up every hour or two any more!"

So, we kept adding sleep associations: I would tap my finger on his
head softly with a heartbeat cadence; I had added a lullaby, started
making a shusshing sound at regular intervals, added a lovey which we
always held while nursing; held him in a specific way, cradled his
head against my arm for slight pressure on it; placed a heavy hand on
his chest to mimic holding him close; gently delatched him BUT DID NOT
MOVE A MUSCLE continuing ALL the added sleep associations; and waited
TEN MINUTES until he was deeply asleep and then I would slowly and
gently set him on the bed beside me and keep doing all the added sleep
associations except the nursing for several minutes. Then gradually
stopping the lullaby, then stopping the head pressure and then
stopping the tapping cadence then stopping the gentle chest pressure
and then stopping the shusshing and the lovey was his companion.

Then when he awakened we did the whole thing again every time for
about four weeks until gradually the delatching routine became
quicker. And after about two more months, when he awakened
occasionally the other sleep associations were enough and gradually
over the next several months I slowly withdrew them except to just
place my heavy hand on his chest or head and shussh him back to sleep,
sometimes with the heart beat tap, tap, tap cadence. But, he still
awakened to nurse about three times a night but it was a much shorter
time awake because all the signals were associated with sleep and he
dozed off more quickly. And I got back to sleep more quickly too.

So, the NCSS allowed me to ultimately get more sleep but in the "short
run" of the first couple of months of adding sleep associations, I had
much less sleep!
Ideas to help you get rest: http://www.mothering.com/discussions...97&postcount=2

Could you get someone to stay with the children while you got a few hours of uninterrupted sleep several times a week during the day while you work on adding sleep associations, in addition to nursing him down when he awakens at night. A key issue is remaining calm when ds would awaken at night. If I focused on I NEED TO SLEEP, I would just get myself and ds distressed. Here is another old post about this:
Quote:
My trigger is sleep deprivation. I am not a sane person without sleep. I don't have the patience or self-control that I need. Or at least that is what I have come to/chosen to believe. Interestingly, as a teenager and in my 20's, I could burn both ends of the candle doing things *I* wanted to do and catch up on sleep later. It is harder when the day never gets a respite, like you are describing. What I have found is that when I *tell* myself over and over "I need to sleep!! I need to sleep!! I need to sleep!!", I amp myself up and feel like life is out of control. It is a scary, overwhelmed, vulnerable feeling. However, the reality is that I can survive a day or few with limited actual sleep IF I don't expend my energy on emotional intensity, EAT PROTEIN, drink 6+ glasses of water and get to close my eyes for 15 minutes, somewhere in there while ds is occupied safely. And IF I do those things, my actual experience of going without sleep doesn't feel as disempowering. I have learned there ARE things I can do to feel refreshed; but sometimes, it just seems more "natural" (learned) to just feel angry that ds isn't sleeping.

Me amping up certainly doesn't calm ds down to a relaxed and drowsy state. : So, I am my worst enemy if I am upset that he won't sleep. Instead, if my self-talk is 'I am awake, eat some protein and drink some water, and get ds settled, then I can lay down', I feel much saner, despite not having slept as much as normal. I really can function without my normal sleep for a few days, if I have been taking care of myself as a rule. My needs for sleep (and ability to be patient) are directly related to my self-care. Staying up after ds goes to bed (did it last night myself) is a recipe for getting burned out and drained, if I do it too often, especially since I haven't eaten any protein this morning either.

We have a little tv in ds's room, I can lay down there if he is awake. Is there a way that you can create a little playarea in the sleeping room, while you are laying down and resting? Barricade the door, so that she is contained with you and just know that the 15 minutes here and there are going to be enough WITH going to bed early with her that night. Just break it down into this moment and this day, without telling yourslef "I AM NEVER GOING TO GET TO SLEEP!". Because, you will. And I do. But, how I get through those days and nights with my energy protected, my sanity (nearly) intact and some degree of patience is to focus on 'I will sleep later'.
The two issues are getting yourself sleep, AND getting ds to sleep. Ds can be awake at night, if you can get sleep. If he is getting enough sleep otherwise. If he is not getting adequate sleep (which is a controversial number, as we all have different needs), then other interventions are necessary. Could you just have dh stay up with him at night for a couple of hours while you sleep, rather than *trying* to get him back to sleep? Not forever, but till you feel more ready to tackle other sleep associations? Cause it is more work to add sleep associations in the short run. Now ds sleeps through the night, but that took months to nurture.

Gotta go. Hope something above helps. Add magnesium for both of you too.

Pat

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#8 of 13 Old 12-24-2007, 11:20 AM
 
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They gave my daughter this drug back in January when she had an MRI. It was sleep deprivation and this drug. Well it didn't work because she woke up during the MRI and they didn't get it all.

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#9 of 13 Old 12-24-2007, 12:45 PM
 
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You mentioned you have tried benadryl. Did he also have a paradoxical reaction to the benadryl (along with chloral hydrate) and is that why it didn't work?

DD has paradoxical reactions to benadryl (DD's sleep is much like your DS's), but not to chlorpheniramine maleate (an OTC antihistamine found in things like Triaminic Cold and Allergy). This med only works for about 4 hours, but four hours of straight sleep is fantastic for us.

When DD wakes for what is probably going to be 2-3 hours (I know this because she gets out of bed; if she was going to fall back asleep nursing she would stay in bed) I have been lately giving her a tiny bit of melatonin (maybe about .25 mg) and it gets her back to sleep in about one hour which is better than 2.
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#10 of 13 Old 12-24-2007, 07:29 PM
 
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I don't have any advice just wanted to say I am living through the same thing. This is my 3rd child and I have literally not slept through the night in 5.5 years. Yep, that's right. Years. My youngest has major issues. We are pretty sure she will end up diagnosed bipolar (myself and my son are already diagnosed bipolar). People with bipolar often have severe sleep issues. She is up anywhere from 5-10 times a night every single night and 4-5 nights a week she also gets up for anywhere from 1.5-4 hours in the middle night to play/watch tv because she will NOT go back to sleep for anything. Sometimes I feel like I am losing my mind from exhaustion but I just keep going. I understand the desperation, I really do. But you will get through it.

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#11 of 13 Old 12-27-2007, 12:01 AM - Thread Starter
 
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Thanks for the suggestions everyone...after we get over the virus we've caught, we'll start trying new things.
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#12 of 13 Old 12-27-2007, 12:15 AM
 
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I have nothing helpful to add, just wanted to say .

My son also wakes up often through the night - sometimes due to pain from CMT but other times I am not sure of the reason. When he was younger he had strange breathing and woke up constantly. At eighteen months he had a sleep study; and slept great through the sleep study!
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#13 of 13 Old 12-27-2007, 10:17 AM
 
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Just wondering- have you tried caffeine?

My nearly 3 year old (Fetal Alcohol Effectts and Sensory Integration Disorder), does not sleep- currently 3 mg of melatonin works for her, but her dr. suggested we try giving her small amounts of caffeinated tea to see if it has a paradoxical effect on her. I personally haven't tried it yet in fear that she would be more wild than she is. lol. She has had several bouts of being awake for 24-36 hours straight...... Our primary focus right now is her cranial sacral therapy and Occupational Therapy with some very intuitive therapists specializing in children with her special needs.

Christine. Unschooling mom to Hollis, Zobey, Zeda, Anna, and Wednesday. We have a lot invested in this whole family thing with marriage kids and a mortgage. You don't just give up on the whole deal when it gets difficult.
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