Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi , My son Finlay is 5 and has never slept through the night. Even now we get up between 2-5 times a night, mostly to help him turn over and get more comfortable, as he cannot do that for himself. He also had a period from about 2.5 years old when he would scream a lot due to night terrors and nightmares. Finlay used to become absolutely hysterical and there was nothing we could do but hold him and try to sooth him. Our doctors are reluctant to give us sedatives, so we make do. Finlay is not on any regular medication. Hope you figure out what is going on. Annelies, mum to Gregor (8), Finlay (5 , bilateral fronto-parietal pmg) and Rowan (8mths) Sleep or Lack thereof Hi, I do not post everyday but I had a question about sleep. Does anyone's children have problems sleeping through the night and if so are they on medication and what medication have you had success with? My son Evan has BPP and turned 2 in October. He has never slept through the night but had a decent pattern where he would get up 1x a night have a drink of milk from a cup and then go back to sleep. Then it seemed to increase to him waking up 2x a night and then he was up 4x and cried if I laid him back in his bed. Nothing really changed during this time and I even tried not giving him a drink unless he signed for it. He wakes up crying like he is either scared or in pain. He is usually sitting up or pulled to stand in his crib when I go in his room. So we got into the habit of him sleeping in my bed because that is the only way either of us would sleep. I have tried letting him cry it out but he for 2hrs straight and then was wheezing afterward. I have never had problems like this with him before. He is not taking naps either, he just screams. We saw his neuro on 11/20 and he gave us RX for Trazadone and Melatonin. Trazadone knocks him out but he is usually up again 4 hours later. I am at a loss for what to do as I have a feeling it is more than just 2yr old stuff. Evan can soothe himself to sleep when it is time to go to bed and used to be good when it was nap time. He has been off the bottle since 18 months. We go back to neuro this week and are going to re-evaluate medication and I am going to ask for a new EEG or sleep study so I can figure out what is going on. Any insight or suggestions would be greatly appreciated. stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Has Evan been checked for sleep apnea? Pat gabeandevansmom wrote: Hi, I do not post everyday but I had a question about sleep. Does anyone's children have problems sleeping through the night and if so are they on medication and what medication have you had success with? My son Evan has BPP and turned 2 in October. He has never slept through the night but had a decent pattern where he would get up 1x a night have a drink of milk from a cup and then go back to sleep. Then it seemed to increase to him waking up 2x a night and then he was up 4x and cried if I laid him back in his bed. Nothing really changed during this time and I even tried not giving him a drink unless he signed for it. He wakes up crying like he is either scared or in pain. He is usually sitting up or pulled to stand in his crib when I go in his room. So we got into the habit of him sleeping in my bed because that is the only way either of us would sleep. I have tried letting him cry it out but he for 2hrs straight and then was wheezing afterward. I have never had problems like this with him before. He is not taking naps either, he just screams. We saw his neuro on 11/20 and he gave us RX for Trazadone and Melatonin. Trazadone knocks him out but he is usually up again 4 hours later. I am at a loss for what to do as I have a feeling it is more than just 2yr old stuff. Evan can soothe himself to sleep when it is time to go to bed and used to be good when it was nap time. He has been off the bottle since 18 months. We go back to neuro this week and are going to re-evaluate medication and I am going to ask for a new EEG or sleep study so I can figure out what is going on. Any insight or suggestions would be greatly appreciated. stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP --------------------------------- Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi , (9) has never been a good sleeper either. Sleep deprivation seemed to cause a seizure after a couple of weeks of waking ever hour. Sleep Studies and EEGs were normal. Our Neurologist prescribed Chlorahydrate liquid. Luckily is tube fed and cannot taste it. It is horrible tasting but it does the job. was able to keep seizures at bay for almost 3 years with the Chloralhydrate. After going through a big growth spurt we started having breakthrough seizures and are now on Depakote for those. And after 6 years of being on Chloralhydrate we either need to up the dose or try something new. It was a life saver for us. AND, I have to tell you that we did have to let cry himself back to sleep on occasions(peeking at him for safety). It was very hard but shocking to me that he was in a habit of waking. Sharon gabeandevansmom wrote: Hi, I do not post everyday but I had a question about sleep. Does anyone's children have problems sleeping through the night and if so are they on medication and what medication have you had success with? My son Evan has BPP and turned 2 in October. He has never slept through the night but had a decent pattern where he would get up 1x a night have a drink of milk from a cup and then go back to sleep. Then it seemed to increase to him waking up 2x a night and then he was up 4x and cried if I laid him back in his bed. Nothing really changed during this time and I even tried not giving him a drink unless he signed for it. He wakes up crying like he is either scared or in pain. He is usually sitting up or pulled to stand in his crib when I go in his room. So we got into the habit of him sleeping in my bed because that is the only way either of us would sleep. I have tried letting him cry it out but he for 2hrs straight and then was wheezing afterward. I have never had problems like this with him before. He is not taking naps either, he just screams. We saw his neuro on 11/20 and he gave us RX for Trazadone and Melatonin. Trazadone knocks him out but he is usually up again 4 hours later. I am at a loss for what to do as I have a feeling it is more than just 2yr old stuff. Evan can soothe himself to sleep when it is time to go to bed and used to be good when it was nap time. He has been off the bottle since 18 months. We go back to neuro this week and are going to re-evaluate medication and I am going to ask for a new EEG or sleep study so I can figure out what is going on. Any insight or suggestions would be greatly appreciated. stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi there: Just a short note. My granddaughter Lindsey was waking up at night for a very long time. The pediatrician didn't realize how bad her adenoids/tonsils were. Not until they took Lindsey to a ENT doctor did they really know the problem. Lindsey also had a condition call Laryngomalicia which usually corrects itself over time. It's an immature esophagus which she was born with. It did get better over the years but it also interfered with her breathing. This summer she had her adenoids out as well as some tissue removed due to the condition I mentioned above. Blessings, Bonnie (grandmother to Lindsey w/PMG) gabeandevansmom wrote: Hi, I do not post everyday but I had a question about sleep. Does anyone's children have problems sleeping through the night and if so are they on medication and what medication have you had success with? My son Evan has BPP and turned 2 in October. He has never slept through the night but had a decent pattern where he would get up 1x a night have a drink of milk from a cup and then go back to sleep. Then it seemed to increase to him waking up 2x a night and then he was up 4x and cried if I laid him back in his bed. Nothing really changed during this time and I even tried not giving him a drink unless he signed for it. He wakes up crying like he is either scared or in pain. He is usually sitting up or pulled to stand in his crib when I go in his room. So we got into the habit of him sleeping in my bed because that is the only way either of us would sleep. I have tried letting him cry it out but he for 2hrs straight and then was wheezing afterward. I have never had problems like this with him before. He is not taking naps either, he just screams. We saw his neuro on 11/20 and he gave us RX for Trazadone and Melatonin. Trazadone knocks him out but he is usually up again 4 hours later. I am at a loss for what to do as I have a feeling it is more than just 2yr old stuff. Evan can soothe himself to sleep when it is time to go to bed and used to be good when it was nap time. He has been off the bottle since 18 months. We go back to neuro this week and are going to re-evaluate medication and I am going to ask for a new EEG or sleep study so I can figure out what is going on. Any insight or suggestions would be greatly appreciated. stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP --------------------------------- Everyone is raving about the all-new Yahoo! Mail beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi, Does Evan have acid reflux or anything like that? I can't say for sure how much it helped, but I think it does help some, but we raised the head of Jake's crib/bed a couple of inches. All I did was take the wheels off the foot of the bed. He's 2.5 yo and sleeps pretty well. I don't know if it's possible for you, but another thing that I really thinks makes a difference (at least for us) is going outside for a little bit as close to bed as possible. My wife and I frequently take Jake, our other son and our dogs for a little walk around the yard in the evening. Even in the winter (we live in northern VT) we get the boys and dogs out at night and I really think that helps. And it sounds weird, but cold, fresh air also calms him down. When he's sick or wakes up screaming, cracking the door open and letting cold air on his face really makes him feel better. You might freeze a bit but try it sometime if you're at the end of your rope. Jake has always been an " outside " little guy so I don't know if it's just him, but fresh air, even through just the slidding glass door cracked open sometimes works wonders. Besides, what else do you have to do at 2.30 in the am? j > > Hi, > > I do not post everyday but I had a question about sleep. Does > anyone's children have problems sleeping through the night and if so > are they on medication and what medication have you had success with? > > My son Evan has BPP and turned 2 in October. He has never slept > through the night but had a decent pattern where he would get up 1x > a night have a drink of milk from a cup and then go back to sleep. > Then it seemed to increase to him waking up 2x a night and then he > was up 4x and cried if I laid him back in his bed. Nothing really > changed during this time and I even tried not giving him a drink > unless he signed for it. He wakes up crying like he is either scared > or in pain. He is usually sitting up or pulled to stand in his crib > when I go in his room. So we got into the habit of him sleeping in > my bed because that is the only way either of us would sleep. I have > tried letting him cry it out but he for 2hrs straight and then was > wheezing afterward. I have never had problems like this with him > before. He is not taking naps either, he just screams. > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > Melatonin. Trazadone knocks him out but he is usually up again 4 > hours later. I am at a loss for what to do as I have a feeling it is > more than just 2yr old stuff. Evan can soothe himself to sleep when > it is time to go to bed and used to be good when it was nap time. He > has been off the bottle since 18 months. > > We go back to neuro this week and are going to re-evaluate > medication and I am going to ask for a new EEG or sleep study so I > can figure out what is going on. > > Any insight or suggestions would be greatly appreciated. > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hello, I don't post very often anymore, but wanted to comment on the sleepless issues. Dillon is 5 1/2 and has only been sleeping most of the night the past year maybe, he doesn't usually sleep all night, a good night he will only be up one or two times. We also tried everything, and I mean everything. It is hard. He still has nights where he is up every hour on the hour. I know if he has a hard time falling asleep, he will be up all night long. If he falls right asleep, he will usually sleep pretty good. Dillon would not cry himself to sleep, he would just cry all night long, fall asleep for 10 to 15 minutes and then right back at it. We had three sleep studies done, none were really conclusive. The sleep studies themselves are a nightmare. The first one showed Dillon had some obstructive sleep apnea, probably due to the floppy airways, the second one showed no obstructive apnea, but some central apnea. The third one, no central and not really typical obstructive apnea. I think it is just the way Dillon's brain is working. We tried everything, nothing worked long term. He slept with me for a couple of years, just because I was desperate and I learned to pat him in my semi-comatose state. The one thing that did seem to work for a while was nasonex spray. I always said that it was like Dillon got a stuffy nose at night. After allergy tests, that were all negative by the way, the dr. gave us nasonex because of Dillon's high arch his sinuses are not formed correctly, growing bigger may be helping, it didn't take much to stuff him up. It is better, liveable for the most part. If he eats too late at night, the reflux keeps him up, I try to not feed him after 7. If he is over-stimulated, playing and being excited, it is hard for him to gear down. Again, I do not think that it is any one thing but a combination of things and I do think that it is just how his brain works at times. Good luck I know how hard it is to deal with no sleep. Harriet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi, , 4, BPP, has also only slept through the night a handful of times. We have also had sleep studies done, as well as 24 and 48 hour EEG's to see if we could pinpoint the cause. No luck. Fortunately, right now he is in a good habit of only waking 1-2 times and as long as he can sleep with us, he will fall back asleep. However, he goes through spurts when nothing will settle him back to sleep other than walking around with him....which leaves us exhausted. Currently, he is taking 2 mg. of Melatonin and 15 mg. of Tofranil for the sleep issues. Basically, this just helps him calm down enough to fall asleep. The doctor will tell you there is nothing really to KEEP them asleep......but if we don't give him the combo of Melatonin and Tofranil, we wouldn't even GET him to sleep. I feel like his brain is just in overdrive and doesn't allow him to relax......speaking of which, guess who just came out of his room coughing??? It is 10:45 and he is already awake.....so must close, but will be interested to see other replies on this topic. Krista mom to , 4, BPP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Sam (15) also woke a few times a night on a regular basis. As he got older, he would get up and wake me, even if just to walk him back to bed. I don't recall what age we started this, but we leave a television on in his room and when he wakes in the night, it catches his attention enough that he stays put and falls back to sleep on his own. Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Well, I am at my wits end. I am giving Evan 6mgs of Melatonin and then 25mgs of the trazadone. I do agree about the stuff helping him get to sleep, that is really nice but even if he would sleep for 6hrs instead of 3 or 4 that would be so much better. - -- In polymicrogyria , " elryan1 " wrote: > > Hi, > > , 4, BPP, has also only slept through the night a handful of > times. We have also had sleep studies done, as well as 24 and 48 > hour EEG's to see if we could pinpoint the cause. No luck. > Fortunately, right now he is in a good habit of only waking 1-2 > times and as long as he can sleep with us, he will fall back > asleep. However, he goes through spurts when nothing will settle > him back to sleep other than walking around with him....which leaves > us exhausted. Currently, he is taking 2 mg. of Melatonin and 15 mg. > of Tofranil for the sleep issues. Basically, this just helps him > calm down enough to fall asleep. The doctor will tell you there is > nothing really to KEEP them asleep......but if we don't give him the > combo of Melatonin and Tofranil, we wouldn't even GET him to sleep. > I feel like his brain is just in overdrive and doesn't allow him to > relax......speaking of which, guess who just came out of his room > coughing??? It is 10:45 and he is already awake.....so must close, > but will be interested to see other replies on this topic. > > Krista > mom to , 4, BPP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Well, we are in the process of getting a referral to ENT for the sleep study etc. Plus I will talk to neuro at our visit hopefully this week. -- In polymicrogyria , pat oneill wrote: > > Has Evan been checked for sleep apnea? > > Pat > > gabeandevansmom wrote: Hi, > > I do not post everyday but I had a question about sleep. Does > anyone's children have problems sleeping through the night and if so > are they on medication and what medication have you had success with? > > My son Evan has BPP and turned 2 in October. He has never slept > through the night but had a decent pattern where he would get up 1x > a night have a drink of milk from a cup and then go back to sleep. > Then it seemed to increase to him waking up 2x a night and then he > was up 4x and cried if I laid him back in his bed. Nothing really > changed during this time and I even tried not giving him a drink > unless he signed for it. He wakes up crying like he is either scared > or in pain. He is usually sitting up or pulled to stand in his crib > when I go in his room. So we got into the habit of him sleeping in > my bed because that is the only way either of us would sleep. I have > tried letting him cry it out but he for 2hrs straight and then was > wheezing afterward. I have never had problems like this with him > before. He is not taking naps either, he just screams. > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > Melatonin. Trazadone knocks him out but he is usually up again 4 > hours later. I am at a loss for what to do as I have a feeling it is > more than just 2yr old stuff. Evan can soothe himself to sleep when > it is time to go to bed and used to be good when it was nap time. He > has been off the bottle since 18 months. > > We go back to neuro this week and are going to re-evaluate > medication and I am going to ask for a new EEG or sleep study so I > can figure out what is going on. > > Any insight or suggestions would be greatly appreciated. > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > > > > > > > --------------------------------- > Everyone is raving about the all-new Yahoo! Mail beta. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Yes, he does have acid reflux and he is on prevacid and reglan for that and I have raised his crib matress up a little bit. I took the pad from the changing table and this helped raise it a bit. Hopefully we will get some answers. But reading on the list just confirms my suspicions that it is the PMG that is a major contributing factor to his not sleeping through the night. stacy mom 2 Evan BPP, spastic hemiplegia CP > > > > Hi, > > > > I do not post everyday but I had a question about sleep. Does > > anyone's children have problems sleeping through the night and if so > > are they on medication and what medication have you had success with? > > > > My son Evan has BPP and turned 2 in October. He has never slept > > through the night but had a decent pattern where he would get up 1x > > a night have a drink of milk from a cup and then go back to sleep. > > Then it seemed to increase to him waking up 2x a night and then he > > was up 4x and cried if I laid him back in his bed. Nothing really > > changed during this time and I even tried not giving him a drink > > unless he signed for it. He wakes up crying like he is either scared > > or in pain. He is usually sitting up or pulled to stand in his crib > > when I go in his room. So we got into the habit of him sleeping in > > my bed because that is the only way either of us would sleep. I have > > tried letting him cry it out but he for 2hrs straight and then was > > wheezing afterward. I have never had problems like this with him > > before. He is not taking naps either, he just screams. > > > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > > Melatonin. Trazadone knocks him out but he is usually up again 4 > > hours later. I am at a loss for what to do as I have a feeling it is > > more than just 2yr old stuff. Evan can soothe himself to sleep when > > it is time to go to bed and used to be good when it was nap time. He > > has been off the bottle since 18 months. > > > > We go back to neuro this week and are going to re-evaluate > > medication and I am going to ask for a new EEG or sleep study so I > > can figure out what is going on. > > > > Any insight or suggestions would be greatly appreciated. > > > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 I'm curious. Did any of your children sleep through the night at some point and then develop the apnea or has this been ongoing. I know PMG affects people diffently. Savannah has been sleeping through the night since she was three months. However it seems she has had a running nose the entire five months she has been alive. Do any of your children have problems with colds? Keasha Hi, > > > > I do not post everyday but I had a question about sleep. Does > > anyone's children have problems sleeping through the night and if > so > > are they on medication and what medication have you had success > with? > > > > My son Evan has BPP and turned 2 in October. He has never slept > > through the night but had a decent pattern where he would get up > 1x > > a night have a drink of milk from a cup and then go back to > sleep. > > Then it seemed to increase to him waking up 2x a night and then > he > > was up 4x and cried if I laid him back in his bed. Nothing really > > changed during this time and I even tried not giving him a drink > > unless he signed for it. He wakes up crying like he is either > scared > > or in pain. He is usually sitting up or pulled to stand in his > crib > > when I go in his room. So we got into the habit of him sleeping > in > > my bed because that is the only way either of us would sleep. I > have > > tried letting him cry it out but he for 2hrs straight and then > was > > wheezing afterward. I have never had problems like this with him > > before. He is not taking naps either, he just screams. > > > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > > Melatonin. Trazadone knocks him out but he is usually up again 4 > > hours later. I am at a loss for what to do as I have a feeling it > is > > more than just 2yr old stuff. Evan can soothe himself to sleep > when > > it is time to go to bed and used to be good when it was nap time. > He > > has been off the bottle since 18 months. > > > > We go back to neuro this week and are going to re-evaluate > > medication and I am going to ask for a new EEG or sleep study so > I > > can figure out what is going on. > > > > Any insight or suggestions would be greatly appreciated. > > > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > > > > > > > > > > > > > > --------------------------------- > > Everyone is raving about the all-new Yahoo! Mail beta. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hello everyone,, Has anyone tried a herbal mix that you put in the bedroom. Even an smelly candle. Iv'e heard that people use lavender oil on the pillow. There is also an other mixture that is used but I can't remember what it was. You might want to check with the child neurology forum at http://brain.hastypastry.net/forums/ and see if anyone there has any information that would be helpful. I' pretty sure that that is where I read to use herbs. Kym only wakes up when she can't move her legs, they seem to lock up at the hips. Although I wake up when she has her regular seizures most nights. regards, janice From: polymicrogyria [mailto:polymicrogyria ]On Behalf Of lakeasha_w Sent: Tuesday, 12 December 2006 1:45 PM To: polymicrogyria Subject: Re: Sleep or Lack thereof I'm curious. Did any of your children sleep through the night at some point and then develop the apnea or has this been ongoing. I know PMG affects people diffently. Savannah has been sleeping through the night since she was three months. However it seems she has had a running nose the entire five months she has been alive. Do any of your children have problems with colds? Keasha Hi, > > > > I do not post everyday but I had a question about sleep. Does > > anyone's children have problems sleeping through the night and if > so > > are they on medication and what medication have you had success > with? > > > > My son Evan has BPP and turned 2 in October. He has never slept > > through the night but had a decent pattern where he would get up > 1x > > a night have a drink of milk from a cup and then go back to > sleep. > > Then it seemed to increase to him waking up 2x a night and then > he > > was up 4x and cried if I laid him back in his bed. Nothing really > > changed during this time and I even tried not giving him a drink > > unless he signed for it. He wakes up crying like he is either > scared > > or in pain. He is usually sitting up or pulled to stand in his > crib > > when I go in his room. So we got into the habit of him sleeping > in > > my bed because that is the only way either of us would sleep. I > have > > tried letting him cry it out but he for 2hrs straight and then > was > > wheezing afterward. I have never had problems like this with him > > before. He is not taking naps either, he just screams. > > > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > > Melatonin. Trazadone knocks him out but he is usually up again 4 > > hours later. I am at a loss for what to do as I have a feeling it > is > > more than just 2yr old stuff. Evan can soothe himself to sleep > when > > it is time to go to bed and used to be good when it was nap time. > He > > has been off the bottle since 18 months. > > > > We go back to neuro this week and are going to re-evaluate > > medication and I am going to ask for a new EEG or sleep study so > I > > can figure out what is going on. > > > > Any insight or suggestions would be greatly appreciated. > > > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > > > > > > > > > > > > > > --------------------------------- > > Everyone is raving about the all-new Yahoo! Mail beta. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 's soft palate doesn't close off the nasal cavity. Bits of food travel up into the sinus cavity causing infections or irritation an a runny nose. A swallowing study can check for velopharyngeal impairment. I'm not sure how long has had sleep apnea, the first sleep study was done last October.He snored up until he was 3 when his tonsils and adenoids were removed. A small jaw, some areas of low tone, and a high arched palate are some of his risk factors for apnea. He always slept through the night. Take care. Pat and ,BPP lakeasha_w wrote: I'm curious. Did any of your children sleep through the night at some point and then develop the apnea or has this been ongoing. I know PMG affects people diffently. Savannah has been sleeping through the night since she was three months. However it seems she has had a running nose the entire five months she has been alive. Do any of your children have problems with colds? Keasha Hi, > > > > I do not post everyday but I had a question about sleep. Does > > anyone's children have problems sleeping through the night and if > so > > are they on medication and what medication have you had success > with? > > > > My son Evan has BPP and turned 2 in October. He has never slept > > through the night but had a decent pattern where he would get up > 1x > > a night have a drink of milk from a cup and then go back to > sleep. > > Then it seemed to increase to him waking up 2x a night and then > he > > was up 4x and cried if I laid him back in his bed. Nothing really > > changed during this time and I even tried not giving him a drink > > unless he signed for it. He wakes up crying like he is either > scared > > or in pain. He is usually sitting up or pulled to stand in his > crib > > when I go in his room. So we got into the habit of him sleeping > in > > my bed because that is the only way either of us would sleep. I > have > > tried letting him cry it out but he for 2hrs straight and then > was > > wheezing afterward. I have never had problems like this with him > > before. He is not taking naps either, he just screams. > > > > We saw his neuro on 11/20 and he gave us RX for Trazadone and > > Melatonin. Trazadone knocks him out but he is usually up again 4 > > hours later. I am at a loss for what to do as I have a feeling it > is > > more than just 2yr old stuff. Evan can soothe himself to sleep > when > > it is time to go to bed and used to be good when it was nap time. > He > > has been off the bottle since 18 months. > > > > We go back to neuro this week and are going to re-evaluate > > medication and I am going to ask for a new EEG or sleep study so > I > > can figure out what is going on. > > > > Any insight or suggestions would be greatly appreciated. > > > > stacy mom 2 Evan 2yrs BPP spastic hemiplegia CP > > > > > > > > > > > > > > --------------------------------- > > Everyone is raving about the all-new Yahoo! Mail beta. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Another non-sleeper here. She takes Rispredal and benadryl for sleep. Since she is on a feeding pump with her feed at night it's critical that we keep her asleep, she won't stay on the pump during the day, so we have to have a way of keeping her asleep. Even on the sleep meds she is still up in the middle of the night anywhere between 2 and 5 times a night. Visit The Spot! http://www.MJsSpot.com Bonny June, The Mommy, Website Administrator, Disney Nut and SNK/Adoption Advocate Marjorie June Mailani (2-6-01) Adopted SNK, Disney & Craft Fanatic, All Around Joyous, Cheerful, Incredible Kid , The Daddy, Cast Member, Disney Reservations Center Heart Mom to Cody (adoption loss 10-00) Psalm 37:4<>< 20:29<> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 My son also was not sleeping through the night. He would wake up anywhere between 3-5 times for a drink. We talked with his endocrinologist? and he went in for a overnight urine testing to see if he needed the drink because he was urinating so much or was he drinking to much that was making him urinate as much as he was. He had to go without any food or drink for 17 hours and every couple of hours they would draw blood to see if things were normal. They were and the day we left the hospital that night he started sleeping through the night. About once a week he wakes up but we also burn wood which makes our house dry. I guess I didn't realize that we were all suffering from this lack of sleep. I'm glad to see I'm not the only one going crazy:) Meliss and MommytoMJM@... wrote: Another non-sleeper here. She takes Rispredal and benadryl for sleep. Since she is on a feeding pump with her feed at night it's critical that we keep her asleep, she won't stay on the pump during the day, so we have to have a way of keeping her asleep. Even on the sleep meds she is still up in the middle of the night anywhere between 2 and 5 times a night. Visit The Spot! http://www.MJsSpot.com Bonny June, The Mommy, Website Administrator, Disney Nut and SNK/Adoption Advocate Marjorie June Mailani (2-6-01) Adopted SNK, Disney & Craft Fanatic, All Around Joyous, Cheerful, Incredible Kid , The Daddy, Cast Member, Disney Reservations Center Heart Mom to Cody (adoption loss 10-00) Psalm 37:4<>< 20:29<> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Here is something to consider..... also has reflux and was on Reglan for some time (1.5 years)....his sleep patterns were terrible while he was on Reglan...come to find out the " tremors " or night time myoclonus that he was having was due to the Reglan. If you do a search on the side effects you will see that this drug has many neurological side effects. I was so upset that neither my neurologist or GI doctor had mentioned this as some of the side effects do not go away when you discontinue the drug. When I brought up the fact that many times before would wake, I would notice his hands or legs tremoring, and that I had read that that could be due to the Reglan, they agreed and pulled him off of the drug....sure enough within a month or so the tremors stopped. It didn't cure his sleep issues, but it did make them better than they were. Just something to explore... Good luck! Krista > > > > Hi, > > > > , 4, BPP, has also only slept through the night a handful of > > times. We have also had sleep studies done, as well as 24 and 48 > > hour EEG's to see if we could pinpoint the cause. No luck. > > Fortunately, right now he is in a good habit of only waking 1-2 > > times and as long as he can sleep with us, he will fall back > > asleep. However, he goes through spurts when nothing will settle > > him back to sleep other than walking around with him....which > leaves > > us exhausted. Currently, he is taking 2 mg. of Melatonin and 15 > mg. > > of Tofranil for the sleep issues. Basically, this just helps him > > calm down enough to fall asleep. The doctor will tell you there > is > > nothing really to KEEP them asleep......but if we don't give him > the > > combo of Melatonin and Tofranil, we wouldn't even GET him to > sleep. > > I feel like his brain is just in overdrive and doesn't allow him > to > > relax......speaking of which, guess who just came out of his room > > coughing??? It is 10:45 and he is already awake.....so must > close, > > but will be interested to see other replies on this topic. > > > > Krista > > mom to , 4, BPP > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Hey, if we haven't put the whole " sleep " thing to bed yet, can I ask a question? (sorry that was my lame attempt at humor) Has anyone ever tried using a weighted blanket? A while back I read where a parent used one with their disabled child and claimed it worked wonders. This is not meant to be a restictive thing but more of a tactile thing. It is said to be useful with children who are ADHD and Autism and helps comfort and calm them thus aiding in sleep. Marz shows both ADHD and Autistic tendencies so we are thinking of getting one to see how it works. Marz has difficulty falling and staying asleep too. Just wondered if anyone ever has tried a weighted blanket and if so what your experience was. Here's a website I found and what they say about it.. http://www.myweightedblankets.com/faq_s Chrusciel wrote: My son also was not sleeping through the night. He would wake up anywhere between 3-5 times for a drink. We talked with his endocrinologist? and he went in for a overnight urine testing to see if he needed the drink because he was urinating so much or was he drinking to much that was making him urinate as much as he was. He had to go without any food or drink for 17 hours and every couple of hours they would draw blood to see if things were normal. They were and the day we left the hospital that night he started sleeping through the night. About once a week he wakes up but we also burn wood which makes our house dry. I guess I didn't realize that we were all suffering from this lack of sleep. I'm glad to see I'm not the only one going crazy:) Meliss and MommytoMJM@... wrote: Another non-sleeper here. She takes Rispredal and benadryl for sleep. Since she is on a feeding pump with her feed at night it's critical that we keep her asleep, she won't stay on the pump during the day, so we have to have a way of keeping her asleep. Even on the sleep meds she is still up in the middle of the night anywhere between 2 and 5 times a night. Visit The Spot! http://www.MJsSpot.com Bonny June, The Mommy, Website Administrator, Disney Nut and SNK/Adoption Advocate Marjorie June Mailani (2-6-01) Adopted SNK, Disney & Craft Fanatic, All Around Joyous, Cheerful, Incredible Kid , The Daddy, Cast Member, Disney Reservations Center Heart Mom to Cody (adoption loss 10-00) Psalm 37:4<>< 20:29<> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Penny, We tried a weighted blanket for when he was 2. We purchased it from Abilitations (I believe....). Unfortunately, would not tolerate the blanket at all. So, they allowed us to send it back and refunded our money (I think it was $250, so not a cheap fix, but if it works, hey, it would be worth every dime!) is now 4 and is starting to sleep a little better. He still wakes up, but as long as my husband or myself are nearby, he quickly goes back to sleep. Good luck. I hope the you have more success with the blanket than we did! Krista > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Hey, Thanks for the info Krista and the name of where you purchased it from. We haven't ordered one yet but will check out Abilitations for sure. It's probably a good idea to go through Abilitations since they have a guarantee. Thanks again for the info. Penny elryan1 wrote: Penny, We tried a weighted blanket for when he was 2. We purchased it from Abilitations (I believe....). Unfortunately, would not tolerate the blanket at all. So, they allowed us to send it back and refunded our money (I think it was $250, so not a cheap fix, but if it works, hey, it would be worth every dime!) is now 4 and is starting to sleep a little better. He still wakes up, but as long as my husband or myself are nearby, he quickly goes back to sleep. Good luck. I hope the you have more success with the blanket than we did! Krista > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Hello, I know I am a little late on this one, we tried a weighted blanket on Dillon, we tried everything you can think of actually. The blanket did not work for us, it does seem like for small children, you are not supposed to use it for sleeping, but I may be wrong. Our OT had one that she let us borrow as they are quite pricey. I hope it works for you. Harriet Quote Link to comment Share on other sites More sharing options...
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