Guest guest Posted May 12, 2011 Report Share Posted May 12, 2011 HI, My daughter is now almost 8, but has had sleep issues her whole life. I nursed for quite some time, and that was/became the only way she could sleep when she was little. Her peds gave us...some yucky syrupy liquid that I can't remember the name of to help her sleep. I had really mixed feelings about medicating her to sleep. Eventually, her neuro had us try melatonin, which was not enough on its own (but is for some kids), so we added Clonadine. It is a high blood pressure med, used for years off label for kids with insomnia. It is not unusual for kids with PMG to have difficulty sleeping. Are you sure your baby is not having gut issues (colic, etc)? Also, try " sleep hygiene " --a cool, dark room, lavender scent, a book or two (or a bath, or whatever calms him down, but always do the same thing)...lots of babies calm down when they are swaddled. Good luck! Thea Sleep issues Hello, My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? Thanks Lucy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Dear Lucy, Your description of your son righ now sounds very familiar! My son was very similar at that age. At the time we didn't know what was wrong, but I knew it wasn't colic. It just didn't fit the bill. We also tried craniosacral therapy. About a month after starting that, he started to have seizures. To this day, I still have my doubts about whether there's a relationship between the craniosacral therapy and seizure onset. The craniosacral therapy didn't help Ben sleep. I'm sorry to say that we never found a solution. Ben, who is now 2, still goes through periods when he can't sleep well, and I think it's his brain going haywire. When he CAN sleep, he's a great little sleeper, meaning he has no behavioral issues around sleep. If you have the resources to get a night nurse, that's the way to go. We couldn't do that, so my husband and I take turns. That way you get sleep at least every other night. It helps! Sleep deprivation is a form of torture. As far as development, my mantra has been 'take it one day at a time' and 'don't worry about something that hasn't happened yet'. I don't think any good doctor will tell you how your son will develop (only bad ones make this prediction, because truth be told they just don't know). I would make sure to have a great developmental pediatrician who can help you keep track of your son's development so that he gets the appropriate intervention early in the game. I had to learn the hard way, for example, that my son needed visual therapy. He has cortical visual impairment (CVI). There's good evidence that this can be greatly helped by the right visual therapy and I'm panicked now that I didn't know to start that earlier. I got his eyes checked - which are functioning properly - but no one told me about the possibility of CVI (which is when visual processing in the brain is off). Not the opthamologist, nor his pediatrician, nor his neurologist. All the best, > > Hello, > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > Thanks > Lucy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Hi , How is Cortical visual impairment tested for? And I totally agree that sleep deprivation is a form of torture! One with which I am unfortunately familiar. Thea Re: Sleep issues Dear Lucy, Your description of your son righ now sounds very familiar! My son was very similar at that age. At the time we didn't know what was wrong, but I knew it wasn't colic. It just didn't fit the bill. We also tried craniosacral therapy. About a month after starting that, he started to have seizures. To this day, I still have my doubts about whether there's a relationship between the craniosacral therapy and seizure onset. The craniosacral therapy didn't help Ben sleep. I'm sorry to say that we never found a solution. Ben, who is now 2, still goes through periods when he can't sleep well, and I think it's his brain going haywire. When he CAN sleep, he's a great little sleeper, meaning he has no behavioral issues around sleep. If you have the resources to get a night nurse, that's the way to go. We couldn't do that, so my husband and I take turns. That way you get sleep at least every other night. It helps! Sleep deprivation is a form of torture. As far as development, my mantra has been 'take it one day at a time' and 'don't worry about something that hasn't happened yet'. I don't think any good doctor will tell you how your son will develop (only bad ones make this prediction, because truth be told they just don't know). I would make sure to have a great developmental pediatrician who can help you keep track of your son's development so that he gets the appropriate intervention early in the game. I had to learn the hard way, for example, that my son needed visual therapy. He has cortical visual impairment (CVI). There's good evidence that this can be greatly helped by the right visual therapy and I'm panicked now that I didn't know to start that earlier. I got his eyes checked - which are functioning properly - but no one told me about the possibility of CVI (which is when visual processing in the brain is off). Not the opthamologist, nor his pediatrician, nor his neurologist. All the best, > > Hello, > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > Thanks > Lucy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Hi everyone, Thanks for all your posts. Just managed to get a chance to come online to read them. We have had 2 sessions of cranial osteopathy and has been better since although I am now worried about it causing issues with seizures given one of the posts on here (sorry I don't know whose that was as I've had to read them all quickly now). has improved since the treatments. We have regularly got him to sleep before midnight and have even had nights where he slept at 10pm until 6:30am! Mostly though he's slept that period but woke once in the night. He's then gone back to sleep quickly though. Last night though he was really unsettled and screamed a lot and it took til 2am for him to sleep. He then slept til 10am though. So I wonder if the osteopathy helped or is he just naturally going through good and bad periods of sleep. I know I need to really take each day at a time. Since I last posted we saw the paediatrician who said that as has PMG, microcephaly and calcium deposits on his brain he is at high risk of significant problems later on. It is just so hard to believe that can be the case when, apart from his sleep possibly, he is so " normal " . I don't want to be in denial but I'd like to know if there is any hope he won't be that bad. Lucy > > Hello, > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > Thanks > Lucy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Dear Lucy, am very much interested of the answer of ur very last question about development. Kindly inform me if u got any information about this issue. Best Regards, Lina Kurdi On Jun 1, 2011, at 4:02 PM, " lucy.williams78 " wrote: > > Hi everyone, > > Thanks for all your posts. Just managed to get a chance to come online to read them. > > We have had 2 sessions of cranial osteopathy and has been better since although I am now worried about it causing issues with seizures given one of the posts on here (sorry I don't know whose that was as I've had to read them all quickly now). has improved since the treatments. We have regularly got him to sleep before midnight and have even had nights where he slept at 10pm until 6:30am! Mostly though he's slept that period but woke once in the night. He's then gone back to sleep quickly though. Last night though he was really unsettled and screamed a lot and it took til 2am for him to sleep. He then slept til 10am though. So I wonder if the osteopathy helped or is he just naturally going through good and bad periods of sleep. > > I know I need to really take each day at a time. Since I last posted we saw the paediatrician who said that as has PMG, microcephaly and calcium deposits on his brain he is at high risk of significant problems later on. It is just so hard to believe that can be the case when, apart from his sleep possibly, he is so " normal " . I don't want to be in denial but I'd like to know if there is any hope he won't be that bad. > > Lucy > > > > > > Hello, > > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > > Thanks > > Lucy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Lucy, The doctors cannot tell by looking at an MRI what your child will or will not be able to do. They can inform you on possibilities, or things to watch for, but many of our children do far more than the doctors would expect looking at their MRIs. You are absolutely correct that you need to take it a day at a time ; let your child show you what he can do. Hold on to your hope, stay informed, and deal with any problems if and when they arise. Best wishes, Christie, mom to Sam (20 yrs old, BPP) On Wed, Jun 1, 2011 at 8:02 AM, lucy.williams78 < lucy.williams28@...> wrote: > > I know I need to really take each day at a time. Since I last posted we saw > the paediatrician who said that as has PMG, microcephaly and calcium > deposits on his brain he is at high risk of significant problems later on. > It is just so hard to believe that can be the case when, apart from his > sleep possibly, he is so " normal " . I don't want to be in denial but I'd like > to know if there is any hope he won't be that bad. > > Lucy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 Hi Lina, I am not sure what information you would like. We have been told by the neurologist that because of what can do now they can pretty much rule out the most extreme end of possible problems he could have but that is about it. It's something I suppose. is 19 weeks old now. He smiles and does some laughs and gurgles a bit. He has rolled from front to back a couple of times and he can lift his head well when on his front. He can't hold it steady when upright though and is being referred for physio. He doesn't seem to be fixing and following though, although he can see. Regarding sleep, which I originally posted about things got really bad with and he was extremely unsettled in the daytime, constantly wanting to be held and then last week crying even then. I phoned his paediatrician and he was taken into hospital for observation for 3 nights. They wondered about seizure activity but from seeing him don't think it is that although he is to be referred for an EEG anyway. They are treating him for silent reflux and he is now better and back to how he originally was in terms of sleep. We have had him in his own bedroom for the last couple of nights since he got home and he only took an hour to get to sleep on Friday. He was doing the same thing as before, dropping off then waking up after a few minutes. After an hour he stopped the waking up and slept 11 hours! Last night it was 2 hours of that before he slept then he was awake after 5 hours and it took an hour to get him to sleep again. He did a further 5 though! We've tried the same technique in the day but he won't sleep properly. Not more than 15 minutes in a stretch. We'll just have to see if he settles some more. > > > > > > Hello, > > > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > > > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > > > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > > > Thanks > > > Lucy > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Hi Lucy, Very late to this thread but interested in how they came up with pmg being related to cmv (meaning herpes, correct?) Thanks, Shari > > Hello, > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > Thanks > Lucy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2011 Report Share Posted July 12, 2011 The congenital CMV was identified from a urine sample from . CMV is linked to tje herpes virus but I did not have herpes! CMV is passed through saliva etc and usually is passed around children. I most likely caught it from my 2 year old daughter who attends nursery. I believe around 80% of the population get it as some time in their lives. There are either no symptoms or flu like ones. The fact had it in his urine soon after birth shows he must have had it before birth and it was therefore that that must have caused the PMG. He therefore has congenital CMV and it could still cause further problems such as deafness. If you Google congenital CMV you can find out more. Lucy > > > > Hello, > > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > > Thanks > > Lucy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 My son also has pmg caused by cmv. After leaving the nicu at 9 weeks of age we had terrible sleeping and feeding issues. It took a few weeks for us to figure out that most of it was related to his antiviral meds. We took him off the meds and shortly after he was sleeping through the night and eating better. He still has feeding issues but we believe a lot of his issues stem from oral aversions. He was intubated and tube fed for the first 7 weeks of life. Anyway, just thought I'd share in case your guy is on the same antiviral meds - Valgancyclovir. Also, I am brand new to this site and am very thankful to have found it. Nice to know I'm not alone with these challenges. Thank you!! > > > > > > Hello, > > > My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He sleeps very little. He will take himself off to sleep first thing in the morning but later we have to use a dummy. He will then often doze about 15 minutes, cry and spit out the dummy. We then start again. Even with the dummy as the day goes on he will not sleep at all. He will not sleep all evening and we often do not get him to sleep at night until the early hours of the morning. Sometimes he is crying and can't be consoled. Often he will seem to drop off but then be awake again or cry as earlier but go quiet when given the dummy again. The paediatrician suggested it was just his age. I am convinced there is more to it and it is related to his PMG. I have seen posts on here about older children and sleep but not babies. Does anyone have a similar experience? > > > I am currently looking into cranial osteopathy at the recommendation of a friend and my Health Visitor. Does anyone have any experience of this? > > > Also if anyone reading this can comment on ' development I'd be grateful. He is doing very well at the moment, smiles, holds his head very well and pretty much anything else expected at this age. Is it inevitable he will suffer some lack of development later or could he continue to progress as any baby without PMG? > > > Thanks > > > Lucy > > > > > > Quote Link to comment Share on other sites More sharing options...
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