Guest guest Posted August 1, 2010 Report Share Posted August 1, 2010 Hey, I had night terrors during some of my very bad OCD periods. I behaved as if I was awake, talked and responded, but I was asleep. Anyway, having ocd/PANDAS, I would say that after many years of suffering, I am very very pro-antibiotics. The problems in the body triggering this are worse than what the antibiotics do. But for me, the greatest benefit is when I have the antibiotic and the antifungal together, not just either or. Other factors impact it too, though ... allergenic foods can increase it, as well as other illnesses. I cannot take any supplements - they frequently make it worse. I have not gotten Cdiff - I've been tested several times. I do have IBS on occasion, but I had it before I had ever taken antibiotics, and it is actually better on them than off. I also cannot take probiotics - they make my symptoms worse - ocd & anxiety. And although antivirals shouldn't seem to matter, I feel like I've made the most progress in the last year since they were added and since I had long-term antibiotics and antifungals with no breaks. I do remember several very vivid dreams where I woke and my heart was still racing and I had an adrenaline rush going. So does he remember the dreams the next day? HTH ________________________________ From: S <webshopping2009@...> Sent: Sun, August 1, 2010 11:12:29 AM Subject: nightmares awake  Let me preface this by saying that my son isn't wacko and he has seizure activity that keeps him awake and we beleive is responsible for the nightmares but no one knows how to help or control it. Medicine did not do it. He has nights where he sleeps thru and otherwise is a pretty regular kid. Does anyone else's child have nightmares that when they wake up they are still so scared? My son wakes up and the dreams don't go away. Its so scary for me too. We were up for hours last night while he swatted at bees. I don't know what to do. He doesn't seem to be able to distinguish. He knows hes awake and he knows that hes having dreams but it still seems to carry terror with it. He has been up every night for weeks between 2 and 7 am. We are both exhausted. All I can do today is cry. The indecision- never knowing if this pill is going to do it or harm him and what about 5yrs down the road? Whay about cdiff and the ABX? It helps him now but what about later? All of a sudden his OCDish symptoms are raging so back on ABX he goes. And so on. I know I have to tow the line but today is a dark day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Thanks so much Its true, my son generally has noticeable improvement after ABX treatment- usually though he gets ABX due to an illness. He isn't on longterm ABX. We kept trying to explain to people that he gets better after hes sick. WHen you say you seemed awake- how long are these episodes? My son will be like this for hours. Would you have a conversation and eat or got to the bathroom without waking? Thanks so much for your help > > Hey, > I had night terrors during some of my very bad OCD periods. I behaved as if I > was awake, talked and responded, but I was asleep. > Anyway, having ocd/PANDAS, I would say that after many years of suffering, I am > very very pro-antibiotics. The problems in the body triggering this are worse > than what the antibiotics do. But for me, the greatest benefit is when I have > the antibiotic and the antifungal together, not just either or. Other factors > impact it too, though ... allergenic foods can increase it, as well as other > illnesses. I cannot take any supplements - they frequently make it worse. > I have not gotten Cdiff - I've been tested several times. I do have IBS on > occasion, but I had it before I had ever taken antibiotics, and it is actually > better on them than off. I also cannot take probiotics - they make my symptoms > worse - ocd & anxiety. And although antivirals shouldn't seem to matter, I feel > like I've made the most progress in the last year since they were added and > since I had long-term antibiotics and antifungals with no breaks. > I do remember several very vivid dreams where I woke and my heart was still > racing and I had an adrenaline rush going. > So does he remember the dreams the next day? > HTH > > > > > > ________________________________ > From: S <webshopping2009@...> > > Sent: Sun, August 1, 2010 11:12:29 AM > Subject: nightmares awake > >  > Let me preface this by saying that my son isn't wacko and he has seizure > activity that keeps him awake and we beleive is responsible for the nightmares > but no one knows how to help or control it. Medicine did not do it. He has > nights where he sleeps thru and otherwise is a pretty regular kid. > > Does anyone else's child have nightmares that when they wake up they are still > so scared? My son wakes up and the dreams don't go away. Its so scary for me > too. We were up for hours last night while he swatted at bees. I don't know what > to do. He doesn't seem to be able to distinguish. He knows hes awake and he > knows that hes having dreams but it still seems to carry terror with it. He has > been up every night for weeks between 2 and 7 am. We are both exhausted. All I > can do today is cry. > > > The indecision- never knowing if this pill is going to do it or harm him and > what about 5yrs down the road? Whay about cdiff and the ABX? It helps him now > but what about later? All of a sudden his OCDish symptoms are raging so back on > ABX he goes. And so on. > > I know I have to tow the line but today is a dark day. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 I know your child isn't wacko, nor is mine who has gone through the exact same sort of night terrors, although my son does not have a seizure disorder. What I do know is that for my child, it usually starts when he is ill, especially a fever. He will wake up usually 2 - 3 hours after he was fallen asleep and is terrified, muttering, mumbling so that it is difficult to understand what he is saying and it usually doesn't make any sense anyway.. Sometimes I can get the occasional word out like " birds " , or something else that to him appear to be flying around the room, yet he is awake enough to try and protect me, while he ducks and screams and continues to mumble incoherently. I can wake him enough to answer questions, yet he never fully comes out of the sort of trance that he is in. At times I thought he was possessed by a spirit it was so bizarre and scary! These episodes tend to carry on for nights and nights at a time probably for 2 - 3 weeks, sometimes 2 -3 times a night, consistently at the same time(s). I ask him about it in the morning and he has no recollection at all, except that he does not want to go to bed and becomes extremely fearful and stressed at the thought of going to sleep. Then all is fine for months and months again until he gets ill again. Sometimes I can tell he is getting ill because the night terrors start before there are any other symptoms of illness or fever. I have discussed these episodes with Dr. Goldberg at great length. He has talked to me about neuro inflammation and how the brain can play tricks on the child. We talk a lot about it with my son, but little relieves his anxiety about it (he is not usually a kid plagued by anxiety at all!) when he is going through a phase of episodes. He does know that it is all coming from his own brain and that there is nothing that can really hurt him. We used to come up with all kinds of strategies to help ease his bedtime stress when going through this, such as a force field of love all around him to protect him and surround him by all good feelings of love and comfort and safety, but it is heart breaking as nothing seems to really help but time and having everything settle down again. I do now know that especially when he is sick, or getting run down, his diet needs to be cleaner then ever to help reduce as much inflammation as possible. This is really tough and I have not heard many folks even on this board discuss this or answer any of my posts in the past. Going through it is hell, for you and your child. Hold on to the fact that it is temporary and " this too shall pass " . Have your son drink a lot of water to help cleanse any toxins from his body. Have him get some exercise during the day so he is good and tired and getting into a deep REM sleep stage each night. One thought that just occurred to me is that we did finally start an SSRI last January after being on the protocol for 7 years and we have not had any night terrors since then. I do know Dr. G talks a lot about the SSRI getting a deeper better quality of sleep and waking up fresh and alert. This has definitely happened with my son and it may have something to do with why we have not had any of these episodes in 8 moths??? Hang in there. This is hard, I know but you must stay strong, for you and for your child! Lori _____ From: [mailto: ] On Behalf Of S Sent: August-01-10 12:12 PM Subject: nightmares awake Let me preface this by saying that my son isn't wacko and he has seizure activity that keeps him awake and we beleive is responsible for the nightmares but no one knows how to help or control it. Medicine did not do it. He has nights where he sleeps thru and otherwise is a pretty regular kid. Does anyone else's child have nightmares that when they wake up they are still so scared? My son wakes up and the dreams don't go away. Its so scary for me too. We were up for hours last night while he swatted at bees. I don't know what to do. He doesn't seem to be able to distinguish. He knows hes awake and he knows that hes having dreams but it still seems to carry terror with it. He has been up every night for weeks between 2 and 7 am. We are both exhausted. All I can do today is cry. The indecision- never knowing if this pill is going to do it or harm him and what about 5yrs down the road? Whay about cdiff and the ABX? It helps him now but what about later? All of a sudden his OCDish symptoms are raging so back on ABX he goes. And so on. I know I have to tow the line but today is a dark day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2010 Report Share Posted August 4, 2010 Thank you so much for taking the time to write! Both you and ! How old is your son? As you said its as if no one really talks about it -the nightmares. Some time back I posted once on an autism forum and got no response. My son has been having them for a long time- as long as I can remember. So I was like " okay, I'm the only one with the problem " . Technically, the neurologist says he has some abnormal activity but it is not enough to be a seizure nor has he had an actual seizure but is very restless and wakes multiple times a night. SHe said " hopefully, he will outgrow it " . Another mom I spoke with ( we were talking waking up not nightmares) said her son started sleeping better once he started seeing a chiropractor and she put him on claritin and iron. Now he sleeps thru night. SO, who knows. Its funny that you mention the word " birds " . For months my son would wake up in the middle of the night talking " blah blah bird " - he was young so that was the only word I could inderstand. SO, finally I said I want you to draw it for me- keep in mind he couldn't really draw much of anything at the time- I'll guess that he was maybe 4. But I thought it might help calm him down. SO at like 3am he drew not birds but Bert! from sesame street! I couldn't believe it! All this time it was Burt (Bert and Ernie)he was afraid of! The picture of Burt was pretty good so he must have had a good picture of it in his mind. I was so upset that I had missed it all that time. Thank you again for writing. Really. I cried reading it -just knowing that your son is better means mine can be too. Refills the batteries a little > > I know your child isn't wacko, nor is mine who has gone through the exact > same sort of night terrors, although my son does not have a seizure > disorder. > > > > What I do know is that for my child, it usually starts when he is ill, > especially a fever. He will wake up usually 2 - 3 hours after he was fallen > asleep and is terrified, muttering, mumbling so that it is difficult to > understand what he is saying and it usually doesn't make any sense anyway.. > Sometimes I can get the occasional word out like " birds " , or something else > that to him appear to be flying around the room, yet he is awake enough to > try and protect me, while he ducks and screams and continues to mumble > incoherently. > > > > I can wake him enough to answer questions, yet he never fully comes out of > the sort of trance that he is in. At times I thought he was possessed by a > spirit it was so bizarre and scary! > > > > These episodes tend to carry on for nights and nights at a time probably for > 2 - 3 weeks, sometimes 2 -3 times a night, consistently at the same time(s). > I ask him about it in the morning and he has no recollection at all, except > that he does not want to go to bed and becomes extremely fearful and > stressed at the thought of going to sleep. Then all is fine for months and > months again until he gets ill again. Sometimes I can tell he is getting > ill because the night terrors start before there are any other symptoms of > illness or fever. > > > > I have discussed these episodes with Dr. Goldberg at great length. He has > talked to me about neuro inflammation and how the brain can play tricks on > the child. We talk a lot about it with my son, but little relieves his > anxiety about it (he is not usually a kid plagued by anxiety at all!) when > he is going through a phase of episodes. He does know that it is all coming > from his own brain and that there is nothing that can really hurt him. We > used to come up with all kinds of strategies to help ease his bedtime stress > when going through this, such as a force field of love all around him to > protect him and surround him by all good feelings of love and comfort and > safety, but it is heart breaking as nothing seems to really help but time > and having everything settle down again. I do now know that especially when > he is sick, or getting run down, his diet needs to be cleaner then ever to > help reduce as much inflammation as possible. > > > > This is really tough and I have not heard many folks even on this board > discuss this or answer any of my posts in the past. Going through it is > hell, for you and your child. Hold on to the fact that it is temporary and > " this too shall pass " . Have your son drink a lot of water to help cleanse > any toxins from his body. Have him get some exercise during the day so he > is good and tired and getting into a deep REM sleep stage each night. > > > > One thought that just occurred to me is that we did finally start an SSRI > last January after being on the protocol for 7 years and we have not > had any night terrors since then. I do know Dr. G talks a lot about the > SSRI getting a deeper better quality of sleep and waking up fresh and alert. > This has definitely happened with my son and it may have something to do > with why we have not had any of these episodes in 8 moths??? > > > > Hang in there. > > This is hard, I know but you must stay strong, for you and for your child! > > > > Lori > > > > _____ > > From: [mailto: ] On Behalf Of S > Sent: August-01-10 12:12 PM > > Subject: nightmares awake > > > > > > Let me preface this by saying that my son isn't wacko and he has seizure > activity that keeps him awake and we beleive is responsible for the > nightmares but no one knows how to help or control it. Medicine did not do > it. He has nights where he sleeps thru and otherwise is a pretty regular > kid. > > Does anyone else's child have nightmares that when they wake up they are > still so scared? My son wakes up and the dreams don't go away. Its so scary > for me too. We were up for hours last night while he swatted at bees. I > don't know what to do. He doesn't seem to be able to distinguish. He knows > hes awake and he knows that hes having dreams but it still seems to carry > terror with it. He has been up every night for weeks between 2 and 7 am. We > are both exhausted. All I can do today is cry. > > The indecision- never knowing if this pill is going to do it or harm him and > what about 5yrs down the road? Whay about cdiff and the ABX? It helps him > now but what about later? All of a sudden his OCDish symptoms are raging so > back on ABX he goes. And so on. > > I know I have to tow the line but today is a dark day. > > > > > > Quote Link to comment Share on other sites More sharing options...
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