Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Oh, SARA! What about a sleep disorders clinic? That's all I can think of. It seems like the only thing left! You poor, poor woman. How are YOU feeling -- how's your brain? Sleep deprivation can be really nasty. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 > Mikey slept 3 hours last night.> Hmm. Brings back memories...SO frustrating. But you did sleep night before last, right...so you're not totally insane today? But I know the feeling...it's like being robbed. Questions that would come to my mind are: 1. Could he be getting sick? 2. What was different about the two days...what was the day he slept well like vs. the day he didn't? 3. What things work most often to help him sleep? 4. Any diet changes? > A dose of a pre-op sedative that should be strong enough to let you put a > tube down his throat had absolutely no effect. None whatsoever.>> Sounds like . Last summer he had some dental work done, and they gave him 15 mg of valium beforehand to make it " easy " to get him into the chair for the IV...fat chance. Five mg knocked me flat in high school...three times that wasn't enough to make it possible for 4 people to get this 7 yr old kid into a dentist's chair. :-( It just doesn't hit them the same way...so says the anesthesiologist. >None of this natural crap is working either.> What all have you tried in this line? Just trying to help you problem solve here... > Waiting for a call from my ped, which will no doubt be useless.> Hopefully not...are they still saying chloral hydrate? I can't remember what meds you have tried so far...clonidine worked well for several months for , but he was older... > And look at that. He's asleep in time to miss OT.> Rats. So sorry...we've done this so many times. I read the response about the playground...basically I think what she is saying is to find a sensory diet that works for him...easier said than done, unfortunately. What does the OT say about it? FWIW, two yr olds have rapidly changing vestibular systems, so their sensory needs change a lot...could be part of the problem? Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 OK Sara - Here's a far out idea. I KNOW you don't like coffee, but maybe some caffeine will out him out... Caffeine has the opposite affect on some kids (does on me, too...calms me down). Good strong coffee or Mountain Dew? (Still opting for the sleep clinic, too) Worth a shot? Penny ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Oh Geesh! I have no clue as to why this should be so difficult to get clonidine for Mikey. was all of 35 pounds and was taking 2.5 pills at one point. That should have been enough to knock a horse over and it was barely enough to get him to sleep. It was a God send. Yes, by ALL means. Go back to the ER. Go at 4:00 a.m. and say, " Here you watch him since no one will medicate the child. I MUST get a few hours of sleep. " Hang in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 What about the double dose of the chloro stuff? You had success with that before....is that not working anymore either? Poor Sara!!!! Tamara ----Original Message Follows---- Reply-To: parenting_autism To: " parenting autism " <parenting_autism > Subject: & %$@%$@#(^%$#%$@ Date: Fri, 28 Dec 2001 09:17:50 -0500 Mikey slept 3 hours last night. A dose of a pre-op sedative that should be strong enough to let you put a tube down his throat had absolutely no effect. None whatsoever. None of this natural crap is working either. Waiting for a call from my ped, which will no doubt be useless. Back to the ER? And look at that. He's asleep in time to miss OT. -Sara. wife to Matt SAHM to nurslings Mikey, 9/14/99, Autism, and Gabe, born at home 5/17/01, GERD http://home.earthlink.net/~thebyks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 > What about a sleep disorders clinic? That's all I can think of. > It seems like the only thing left! Repeat after me -- I know you can say it -- " waiting list " ... *sigh* > You poor, poor woman. How are YOU feeling -- how's your brain? > Sleep deprivation can be really nasty. Thank you...It really does help to know other people care, and understand how really serious this is. At present I am OK. By OK I mean functional, not deeply depressed or suicidal, no thoughts of harming my kids, and the house isn't much worse than usual. I have not been grocery shopping and we're out of paper diapers, but I did wash the cloth ones, so the kids can be changed as soon as they dry. Matt has had nice time off and we've slept in shifts so we are both fairly rested. Naturally that means the whole marriage thing is on hold but we are both sane, and, you know, priorities...Now, I am panicking over a single 3 hour night, but then again, I've seen the pattern multiple times in the past. He has gradually decreased from 12 hours the first night to 10, 7, 5, now 3. The last time he got down to 3 hours it took a MONTH to get him back " on track. " How long I will stay OK...will depend on how much sleep I get... Ped said we can increase the dose of chloral hydrate yet again, and we can try a suppository form. It is better absorbed that way and for some people is more effective. Also he would not be able to spit any out or make himself vomit etc. She talked to a dev ped at Children's who we saw once before, and the dev ped said she would call us, but that was a week ago & she hasn't called & she's not in again till Wednesday. (Now I know why these blasted waiting lists are so long -- the dr's only work one day a week.) They were talking about clonodine for him but my ped is not familiar with it & isn't sure of the dose...the other dr was supposed to handle that but, obviously, hasn't. Gotta go, -Sara. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 > What about a sleep disorders clinic? That's all I can think of. > It seems like the only thing left! Repeat after me -- I know you can say it -- " waiting list " ... *sigh* ----------Waiting List??? You are kidding me??? Do they give you any suggestions in the meantime?? My Word, that's awful! Still thinking about you guys, Sara... Penny :-( Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hey Penny, even with the label " at risk " it is mid-Jan before we can get in ANYWHERE. I don't even know if the docs we are going to see will be able to help us, but they are the first ones who will see us, so we'll go from there. The label DID reduce the waiting list from 4-6 months to a single month. My ped's last best suggestion was to double his dose of chloral hydrate and lock him in his room. Obviuosly the last week has proved that a miserable failure. His bed is back in our room, but the beds are across the room from each other. I am hoping the compromise will give him enough security, knowing I am right there, to relax and let himself sleep; but maybe let me sleep better and help him learn to wake up and go back to sleep without lots of help. I think that last bit's a pipe dream...I think something physical is going on here; I just don't see this as a behavioral issue AT ALL, excepting the behaviors resulting from his anxiety -- which I believe has a physical basis. Maybe as simple as sensory stuff; maybe as complex as a physical defect in his brain... I mean, let's look at the sleep theory here, that he should 'learn' how to go back to sleep after the normal night wakings we all have, without help, without me being there. Why would he not be able to go back to sleep when the conditions he went to sleep in are exactly replicated? Even if those conditions are not the 'ideal' dark, quiet, alone-in-my-bed conditions? The night wakings are not a problem when we sleep together, because our sleep cycles are in sync, and I am waking naturally (as we all do, though mostly we don't remember it) at the same time he is. It's the not going back to sleep part that is at issue here. So if you go with the behavioral sleep associations theory...he is waking up in the same conditions in which he went to sleep, so he should be able to go back to sleep easily. Yet, even with a heavy dose of a sedative, he can't. It just doesn't add up for me. Am I not understanding some part of this theory? What's missing? Speaking of sleep, I'd better go to bed...I got the 4th Harry Potter book yesterday and had to stay up to finish it tonight. Matt already agreed to let me sleep in tomorrow... -Sara. > > What about a sleep disorders clinic? That's all I can think of. > > It seems like the only thing left! > > Repeat after me -- I know you can say it -- " waiting list " ... > > *sigh* > ----------Waiting List??? You are kidding me??? Do they give you any > suggestions in the meantime?? My Word, that's awful! > > Still thinking about you guys, Sara... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 >>I mean, let's look at the sleep theory here, that he should 'learn' how to > go back to sleep after the normal night wakings we all have, without help, > without me being there. Why would he not be able to go back to sleep when > the conditions he went to sleep in are exactly replicated?>> I think that the reason our kids can't go back to sleep when they rouse at night is because of a few things... --if you are awake when he drops off, and asleep when he rouses, then there are going to be differences in sounds, at least...people breathe differently when asleep...tiny changes are huge to him... --these kids are hypervigilant, so when they open their eyes, they don't necessarily interpret things as " safe " like we do...something may look different because the lighting has changed during the course of the night. is terrified of the chandelier in our dining room at night...doesn't bother him during the daytime at all, but as the light starts changing in late afternoon, he starts keeping tabs on it... --kids with sensory disturbances don't always get the same information each time they have an experience. They may " smell " colors, or " taste " them...there is absolutely no telling whether what he saw/felt/heard when dropping off to sleep is the same thing he will see/feel/hear when he wakes up later... --some people theorize that these kids get a dumping of stress chemicals throughout their day, including during their sleep cycles, that sends them straight into sympathetic overload...they wake up because they are suddenly hyper-alert, not because their regular sleep cycle is rousing them... --he may not know where his body is, especially when it is dark...kids with autism (and other sensory dysfunction) depend TONS on their vision to function because it is usually their most dependable sense. When you are close by, he is able to feel safer because you are his protector...he may need that physical proximity still. You are giving him extra input in terms of temperature, smell, and so on that tells him that things are still okay. I wish I had an answer for you...I did go yesterday to Target and get a " My Puppy Love " (made by Parents' Play n Learn)...makes womb/heart beat sounds and is motion activated...kept him calm all through the store (but he tossed it off his bed...oh well). I know none of this will get you anymore sleep, but it keeps me from going nuts if I sort of understand what is going on. Still thinking about you... Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 > What about the double dose of the chloro stuff? You had success > with that > before....is that not working anymore either? Poor Sara!!!! Yeah, Tamara, that stopped working. Apparently he's built a tolerance to it very, very quickly...We had not been using it every night but just as needed, & went to giving it every night at bedtime. The first 2 nights it worked beautifully but his sleep time has gradually decreased to the 3 hours. Last night, he went down without it and slept very well. But of course, he was exhausted from the previous night... -Sara. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2001 Report Share Posted December 29, 2001 > Here's a far out idea. I KNOW you don't like coffee, but maybe some > caffeine will out him out... Caffeine has the opposite affect on some kids > Worth a shot? Anything's worth a shot, Penny! But it will have to be sugar-free...hrm...Diet Mountain Dew? -Sara. Quote Link to comment Share on other sites More sharing options...
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