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Is my 2 yr old having seizures in his sleep?
My son is nearly 2 yrs old and has has an undiagnosed syndrome that includes, arrested hydrocephalus, global developemental delay, epilepsi (he currently taking 60 mgs of phenobarb 2x's daily), hypotonia, and an enlarged left kidney (no reflux). He has been having disturbing episodes in his sleep. It doesn't happen everynight, it has lasted anywhere from 5 mins to nearly all night or naptime long. It has happened as many as 5 nights (including naps) in a row but has also had as many as 5 weeks between episodes. He had a level 1 sleep study in March/07 but nothing happened during the study. His pediatrician suspects seizure activity but she has never seen this before. He has has several EEG's...all normal. His MRI's and CT's don't show any changes of the past couple years. He has a thin corpus collosum, less than typical amounts of white matter and enlarged lateral ventricals.
I have included a link to a 30 sec clip of what happens while he sleeps. Sometimes there is no stridor (assuming that is what that sound is)only the gasping. I have tried to change his possition. I have woken him only to have him fall back to sleep and continue doing it. This has been happening for several months now. If it is seizures, how safe can it be for him to be seizing for several hours at a time? Could it be his heart or lungs? Maybe gastroesophegeal reflux?
Thank you so much for your time.
http://www.members.shaw.ca/shylamasse/carson.wmv
I have included a link to a 30 sec clip of what happens while he sleeps. Sometimes there is no stridor (assuming that is what that sound is)only the gasping. I have tried to change his possition. I have woken him only to have him fall back to sleep and continue doing it. This has been happening for several months now. If it is seizures, how safe can it be for him to be seizing for several hours at a time? Could it be his heart or lungs? Maybe gastroesophegeal reflux?
Thank you so much for your time.
http://www.members.shaw.ca/shylamasse/carson.wmv
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms, story and the video you provided are concerning for seizures. Given the structural abnormalities in the brain that you described (hydrocephalus, thin corpus callosum) it is likely that seizures may occur in his brain. The video illustrated your child making a 'barking type' nosie and it seemed that he was swallowing and moving his mouth some. These mouth movements are called automatisms when they are associated with seizures. I do not suspect this is due to reflux, but the only way to find out is to do the testing. The type of testing that you need is called an epilepsy monitoring unit. This is a section of the hospital (found in major epilepsy centers) that admit for continous EEG for 3-7 days. Having a routine EEG is not going to be very helpful unless you actually capture the spell during the recording. Having several days of continous EEG increases the likelyhood that a spell will be captured. I would recommend that you see an epilepsy specialist (a neurologist with extra training in epilepsy) at a major academic institution for further testing.
I hope this has been helpful.
The symptoms, story and the video you provided are concerning for seizures. Given the structural abnormalities in the brain that you described (hydrocephalus, thin corpus callosum) it is likely that seizures may occur in his brain. The video illustrated your child making a 'barking type' nosie and it seemed that he was swallowing and moving his mouth some. These mouth movements are called automatisms when they are associated with seizures. I do not suspect this is due to reflux, but the only way to find out is to do the testing. The type of testing that you need is called an epilepsy monitoring unit. This is a section of the hospital (found in major epilepsy centers) that admit for continous EEG for 3-7 days. Having a routine EEG is not going to be very helpful unless you actually capture the spell during the recording. Having several days of continous EEG increases the likelyhood that a spell will be captured. I would recommend that you see an epilepsy specialist (a neurologist with extra training in epilepsy) at a major academic institution for further testing.
I hope this has been helpful.
Hi there, this is my first post =)
I am a mom of a child who did similar things in his sleep for the first 3-1/2 years-then it just stopped. No rhyme or reason to it. He is 4 now and he hasn't had an episode in 9 months!!!
My son was a 3# preemie and has been diagnosed with CP and epilepsy, among other things(he is a normal little boy to look at, however-and without extensive testing you would never know =).
Noone was ever able to figure out what was going on and the episodes produced nothing on the EEG(we had a few, some without, but most with the breathing irregularities), his O2 sats were monitored overnight several times, he wore an A/B monitor for over a year, we had the entire house checked for CO and nothing turned up. For him, the episodes seemed to be lessened when he was sleeping on his tummy. You might want to try that and see if it helps...the other thing that helped him was bringing him in my bed and rocking him when the episodes would start, they would continue, but the duration was lessened.
Best of luck to you and your baby!!! I hope it all works out for the 2 of you!!
I am a mom of a child who did similar things in his sleep for the first 3-1/2 years-then it just stopped. No rhyme or reason to it. He is 4 now and he hasn't had an episode in 9 months!!!
My son was a 3# preemie and has been diagnosed with CP and epilepsy, among other things(he is a normal little boy to look at, however-and without extensive testing you would never know =).
Noone was ever able to figure out what was going on and the episodes produced nothing on the EEG(we had a few, some without, but most with the breathing irregularities), his O2 sats were monitored overnight several times, he wore an A/B monitor for over a year, we had the entire house checked for CO and nothing turned up. For him, the episodes seemed to be lessened when he was sleeping on his tummy. You might want to try that and see if it helps...the other thing that helped him was bringing him in my bed and rocking him when the episodes would start, they would continue, but the duration was lessened.
Best of luck to you and your baby!!! I hope it all works out for the 2 of you!!
Thank you (and your nurse colleague) for taking the time to watch my clip. I am going to ask the neurologist about schedualing Carson for a telemetry study. My only concern with that is the unpredictabilty of these events. He has gone episode-free for a week and a half now. I would hate to spend a week in hospital and still not know.
I am a paediatric neurology nurse and myself and another nurse I work with watched your video. Obviously it is hard to be certain from the video alone but we think that the symptoms your child is experiencing does resemble seizure activity. Seizure activity is often more subtle in children than in adults and quite often does include purely screaming or vocal sounds and facial twitching. I have even seen seizure activity that only included very minor one sided facial twitching. Obviously the best thing that you should do would be to take the video to your neurologist to watch and do not hesitate to get a second opinion if you are still concerned. Another thing that is quite common during seizure activity is that the pupils either dilate (get really big) or constrict (to really small). In some cases you may find that the pupils react abnormally to light during the seizure (ie. shining a torch in ones eyes) but this can be very subtle. In regard to EEGs, a majority of children with epilepsy will only have changes on the EEG during seizure activity. In those cases, most are referred for an overnight Video EEG during which the child is taken off their anticonvulsants and hooked up to the machine and filmed overnight. This might be something to discuss with your neurologist.
The only other possiblity was that your child might be having sleep apnoeas however this isn't a usual presentation. Usually when a child comes out of an apnoea, they have one quick inspiratory breath but then breathing resumes normally until the next breath holding episode. However, your child has multiple quick inspiratory gasps in a row which is not something we have seen in our clinical experience.
Hope this helps and doesn't complicate thing for you.
The only other possiblity was that your child might be having sleep apnoeas however this isn't a usual presentation. Usually when a child comes out of an apnoea, they have one quick inspiratory breath but then breathing resumes normally until the next breath holding episode. However, your child has multiple quick inspiratory gasps in a row which is not something we have seen in our clinical experience.
Hope this helps and doesn't complicate thing for you.
Sorry I got his spelling wrong. Anyway, I just read what Josie had to say and found it interesting. Looking at the video clip there are two things that spring to mind (I am an Occupational therapist by background but never really did peds)....so bear that in mind when you read. I wonder if some of what you are seeing is night terrors which are common to this age group and can last a while during each attack. The other idea is to see if he does better on a trial of a CPAP machine. You could request a oxygen saturation study overnight, these are often free and depending on his results the Dr will or will not recommned a trial of CPAP (these are the machine they use for people with sleep apnea. It would certainly be worth a try doing it, esp if this could be driven from some oxygen changes.
Both Josie and I post on a board that is private but we happen to have a neuro and a pediatrican who are long members - our focus is parenting but they may be interested in peeking at your video and seeing if they have more suggestions.
What do you think Josie?
Fiona
Both Josie and I post on a board that is private but we happen to have a neuro and a pediatrican who are long members - our focus is parenting but they may be interested in peeking at your video and seeing if they have more suggestions.
What do you think Josie?
Fiona
Hey Shyla, I'm Fiona's friend Josie!
My son Clancy is 2.5 years old and has myoclonic epilepsy with developmental delay.His seizures are now under control with Lamotrigine, and his devleoping is improving with speech, physio and occupational therapy.
We went through about a year of seizures, and Cancy used to have multiple seizures at night. We picked these up during sleep EEGs, his EEGs while awake have been normal and there is nothing on the MRI. I watched the video you posted, Clancy used to make a similar noise to that sometimes, and it generally lasted a few minutes. It doesn't happen now the seizures are under control. I'm not sure though if what your son is experiencing is seizures, or something else.
As far as seizures being damaging, there seems to be conflicting evidence on that. Some say that whatever is causing the seizures is what is doing the damage - not the seizures themselves. Other research seems to say that recurrent seizures may result in the loss of nerons. The usual course of action is to control the seizures as soon as possible. We were "lucky" in a way that Clancy reliably had seizures during EEGs so they were easily detected. I have heard there are ways of monitoring patients over a few days, including a portable EEG. It would be good for the doctor to have one of these episodes on the trace.
I know how hard it is to have a son with medical and developmental issues, and it's sometimes good to just talk about to someone who has been through it. If you would like to email me please feel free, the address is jowaterman73 at yahoo dot com dot au
I wish you all the best, I hope you get some answers soon. As if parenting isn't hard enough, or worrying enough!
Josie
My son Clancy is 2.5 years old and has myoclonic epilepsy with developmental delay.His seizures are now under control with Lamotrigine, and his devleoping is improving with speech, physio and occupational therapy.
We went through about a year of seizures, and Cancy used to have multiple seizures at night. We picked these up during sleep EEGs, his EEGs while awake have been normal and there is nothing on the MRI. I watched the video you posted, Clancy used to make a similar noise to that sometimes, and it generally lasted a few minutes. It doesn't happen now the seizures are under control. I'm not sure though if what your son is experiencing is seizures, or something else.
As far as seizures being damaging, there seems to be conflicting evidence on that. Some say that whatever is causing the seizures is what is doing the damage - not the seizures themselves. Other research seems to say that recurrent seizures may result in the loss of nerons. The usual course of action is to control the seizures as soon as possible. We were "lucky" in a way that Clancy reliably had seizures during EEGs so they were easily detected. I have heard there are ways of monitoring patients over a few days, including a portable EEG. It would be good for the doctor to have one of these episodes on the trace.
I know how hard it is to have a son with medical and developmental issues, and it's sometimes good to just talk about to someone who has been through it. If you would like to email me please feel free, the address is jowaterman73 at yahoo dot com dot au
I wish you all the best, I hope you get some answers soon. As if parenting isn't hard enough, or worrying enough!
Josie
This comment has absolutely no beneficial value as far as a possible diagnosis for your son, but when I watched the video, my heart ached for him. I know this is impossible, but I just wanted to hold him close and absorb into me any and all sickness inside that precious little body. I know as his mom, you would gladly do the same thing
As I said....there is no medical beneficial value, just spiritual because that beautiful little boy will be in my prayers. I will also ask that you be given the strength that you are going to need to make it through until he gets the diagnosis/treatment that he needs.
As I said....there is no medical beneficial value, just spiritual because that beautiful little boy will be in my prayers. I will also ask that you be given the strength that you are going to need to make it through until he gets the diagnosis/treatment that he needs.
Please email Josie at her address and one of us will figure out how to post his video clip on our board...it will probably be Josie as she is waaaaay more computer literate than I am LOL. She is probably the person to keep you in the loop and I am know has been through lots of soul searching and research of Clancys issues herself.
You can request through your PCP another O2 sat study for free, things change with kiddos all the time and from his history I don't think it would be wasted time.
Its interesting that Clancy made similar noises during his sleep before dx.
Is he your only child?
Fiona
Fionajnz at gmail dot com (you need to make adjustments to the address, we do it this way to reduce spam hits)
You can request through your PCP another O2 sat study for free, things change with kiddos all the time and from his history I don't think it would be wasted time.
Its interesting that Clancy made similar noises during his sleep before dx.
Is he your only child?
Fiona
Fionajnz at gmail dot com (you need to make adjustments to the address, we do it this way to reduce spam hits)
Thank you so much for your prayers. I sure it will be beneficial!! Carson is a beautiful and extremely sweet little boy I will scoop him up and give him a snuggle on your behalf....he loves to cuddle! He is a delicate little gift who has already given me more than I could possibly repay. I musta done something right to be worthy of raising such a precious child.
Thanks again for sending up a prayer for us.
Shyla
Thanks again for sending up a prayer for us.
Shyla
Thank you both!
Josie, Carson is taking phenobarb right now because he is small and under the age of 2, it is safest for his liver right now but he does have an upcoming EEG and neuro apt. I imagine there will be discussion regarding trying different meds out. Thank you so much for your email address, I have many wonderful friends but it is tough to relate with them regarding issues they themselves, can't imagine going through.
Fiona, I considered night terrors too. I did a little research in that department as well. The one thing that stumps me about both, seizures and terrors is that Carsy's BPM are quite low (for him), around 100 while this is happening as opposed to when he is seizing and his BPM is upward around 160. Also, (bear in mind that I am just a mom with a stethescope) I have wondered if his heartbeat is irregular while he is doing it. That is difficult for me to distiguish because the sound he makes is loud and distracts from the sound of his heart. As far as O2 monitoring goes... in February he landed in the hospital for seizure investigation after a long one (more than 70mins) and very low O2 sats. While hosptitalized he contracted RSV and was on oxygen for 8 days. After 5 days I began to wonder if he would ever wean because his sats would drop as soon as he closed his eyes. This got me to wondering about these sounds he makes at night. He was seen by the peds pulminary spec. and a level 3 sleep study was done the night before we were released. He was then refered for a level 1 study.....which was episode free and his O2 sats were stable.
If you think the video would be of any interest to anyone else in your circle please pass it on! I really want to get it out there and make sure our team is doing everything that we can to give us an answer.
Thanks again!
Shyla
Josie, Carson is taking phenobarb right now because he is small and under the age of 2, it is safest for his liver right now but he does have an upcoming EEG and neuro apt. I imagine there will be discussion regarding trying different meds out. Thank you so much for your email address, I have many wonderful friends but it is tough to relate with them regarding issues they themselves, can't imagine going through.
Fiona, I considered night terrors too. I did a little research in that department as well. The one thing that stumps me about both, seizures and terrors is that Carsy's BPM are quite low (for him), around 100 while this is happening as opposed to when he is seizing and his BPM is upward around 160. Also, (bear in mind that I am just a mom with a stethescope) I have wondered if his heartbeat is irregular while he is doing it. That is difficult for me to distiguish because the sound he makes is loud and distracts from the sound of his heart. As far as O2 monitoring goes... in February he landed in the hospital for seizure investigation after a long one (more than 70mins) and very low O2 sats. While hosptitalized he contracted RSV and was on oxygen for 8 days. After 5 days I began to wonder if he would ever wean because his sats would drop as soon as he closed his eyes. This got me to wondering about these sounds he makes at night. He was seen by the peds pulminary spec. and a level 3 sleep study was done the night before we were released. He was then refered for a level 1 study.....which was episode free and his O2 sats were stable.
If you think the video would be of any interest to anyone else in your circle please pass it on! I really want to get it out there and make sure our team is doing everything that we can to give us an answer.
Thanks again!
Shyla
This is just a thought but you should do some research on Reflex Anoxic Seizures. What you describing sounds like it could be a possiblility.
Thanks to you both. I checked out info on reflex anoxic seizures and I have my doubts but that did take me down a different research path so it was still an appreciated peice of advice.
Fiona, Thank you for passing the link on. I would love to connect with another mom with a similar experience. As far as montioring Carson at night goes...we have a video monitoring system in his room. But some nights it just makes me feel all the more helpless to see it and not know what it is or how to make it stop. It's when he stops making noise that I really begin to feel worry.
Thanks again!
Shyla
Fiona, Thank you for passing the link on. I would love to connect with another mom with a similar experience. As far as montioring Carson at night goes...we have a video monitoring system in his room. But some nights it just makes me feel all the more helpless to see it and not know what it is or how to make it stop. It's when he stops making noise that I really begin to feel worry.
Thanks again!
Shyla
I have a friend who is dealing with a similar thing. I will post your link to her and hopefully she will reply to you. Her son has been dx with epilepsy and developmental delays.
Wishing you answers really soon, it has to be really worrying for you. How do you monitor him at night so he remains safe? My friend is located in Australia so it may be an odd time that she replies so check in. Her name is Josie.
Hugs.
Fiona, Mom to 3 ages 7y, 4yo and 18mths.
Wishing you answers really soon, it has to be really worrying for you. How do you monitor him at night so he remains safe? My friend is located in Australia so it may be an odd time that she replies so check in. Her name is Josie.
Hugs.
Fiona, Mom to 3 ages 7y, 4yo and 18mths.
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