single dad needs answers/help

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Hi All,

My youngest son (6) has had night terrors since he was 2-3 years old. They only occured once every 3-5 months and he would wake up dazed/screaming and go right back to sleep. Abut 2 weeks ago they started back up except they started with him grabbing his mouth and screaming "i cant close my mouth". This would last about 30 seconds and when he would come out of it, he would fall right back to sleep and not remember anything. They are happenining more frequently (est.:12 times in 15 days)and are getting more severe. Of the 12 times they started: the "i cant close my mouth" thing happened for 2 or 3 nights and changed into more of a convulsing/seizure like activity. The right side of his face began to seize up, has a dazed look with eyes shaking, choking sound, and when he stops he begins to scream/cry again. Like I mentioned, with each night these are getting longer and seem worse. The choking/gagging seem to be a little harsher and last nights epeisode, his entire face was convulsing.

I took him to our pediatrician last week when it started to happen with just the mouth incident and they said its psycological. I don't think it is so I went straignt to a neurologist who said he isnt 100% but it sounds like seizures. We have 2 eeg's scheduled this month (one on site and one portable) and i am waiting for my insurance pre-cert to come back so we can schedule the MRI. I notified our neurologist this morning that he had another one and it was worse so he said to take TRILEPTAL to prevent further issues. He said it can always be stopped and will not affect the EEG's or MRI. This is killing me..the fear of the unknown..holding my son while it seems he is choking and feeling like there is nothing I can do...

Has anyone experienced a night terror with what seems like a seizure during the terror?

Thanks in advance for your feedback

Comments

It does sound like seizures.

Submitted by Anonymous on Mon, 2014-08-11 - 17:19

It does sound like seizures. Regular doctors do not know all the 40+ different types of seizures there are. They may know about some but not all. After the first episode you should have discussed this issue with the doctor and gotten a referal to a neurologist who specializes in epilepsy. All a seizure is is "an electrical impulse going off in the brain wrong causing a chain reaction" If the only time this happens it could be nocturnal epilepsy, Nocturnal seizures happen generally at night or in ones sleep. The EEG is a test which shows the electrical out put in the brain.The on site will last about an hour. The other EEG is one that they hook up and the equipment is taken home and it can last or run for 2-4 days. When I had my last I had to go back to an office and they changed the batteries and downloaded the information. If either EEG shows abnormalities for the neurologist it means that your son has seizure activity and the area it comes from will be known. There are many times that EEG's all come back normal. The main reason for that is the activity is deeper in the brain. I would suggest that if your son has another episode by any means video it and show it to the neurologist. It would help him/her with the diagnosis Trileptol is a good medication and it does work well. I used it a few years ago. It could help stop the seizures while the tests are done and a diagnosis is made. It may stop your sons seizures and like the neurologist stated he can always be taken off the medication. The longer the delay the worse the seizures can get. As for the MRI. It could be helpful. I say that because I had 15-20 different EEG's all show up normal. They ran a battery of tests one of which was the 1960's version of todays MRI. All of the etsts came up normal nothing could be found. The last test was another EEG. In that EEG I fell asleep and in that EEG they found seizure activity. Knowing where the activity came from the neurologists then went back and looked closer at the neuro-angeogram and they found scared brain tissue. That scar tissue was from a hemorage to the brain. The hemmorage was caused from a blow to the head between 6-8. SO if the in site EEG is normal they might see activity in the longer one which is a portable unit. He will be wearing the unit while he sleeps . I hope this helps you understand a litle more and your son gets the assistance he needs

It does sound like seizures. Regular doctors do not know all the 40+ different types of seizures there are. They may know about some but not all. After the first episode you should have discussed this issue with the doctor and gotten a referal to a neurologist who specializes in epilepsy.  All a seizure is is "an electrical impulse going off in the brain wrong causing a chain reaction"  If the only time this happens it could be nocturnal epilepsy, Nocturnal seizures happen generally at night or in ones sleep. The EEG is a test which shows the electrical out put in the brain.The on site will last about an hour. The other EEG is one that they hook up and the equipment is taken home and it can last or run for 2-4 days. When I had my last I had to go back to an office and they changed the batteries and downloaded the information. If either EEG shows abnormalities for the neurologist it means that your son has seizure activity and the area it comes from will be known. There are many times that EEG's all come back normal. The main reason for that is the activity is deeper in the brain. I would suggest that if your son has another episode by any means video it and show it to the neurologist. It would help him/her with the diagnosis Trileptol is a good medication and it does work well. I used it a few years ago. It could help stop the seizures while the tests are done and a diagnosis is made. It may stop your sons seizures and like the neurologist stated he can always be taken off the medication. The longer the delay the worse the seizures can get. As for the MRI. It could be helpful. I say that because I had 15-20 different EEG's all show up normal. They ran a battery of tests one of which was the 1960's version of todays MRI. All of the etsts came up normal nothing could be found. The last test was another EEG. In that EEG I fell asleep and in that EEG they found seizure activity. Knowing where the activity came from the neurologists then went back and looked closer at the neuro-angeogram and they found scared brain tissue. That scar tissue was from a hemorage to the brain. The hemmorage was caused from a blow to the head between 6-8.  SO if the in site EEG is normal they might see activity in the longer one which is a portable unit. He will be wearing the unit while he sleeps . I hope this helps you understand a litle more and your son gets the assistance he needs 

It does sound like seizures. Regular doctors do not know all the 40+ different types of seizures there are. They may know about some but not all. After the first episode you should have discussed this issue with the doctor and gotten a referal to a neurologist who specializes in epilepsy. All a seizure is is "an electrical impulse going off in the brain wrong causing a chain reaction" If the only time this happens it could be nocturnal epilepsy, Nocturnal seizures happen generally at night or in ones sleep. The EEG is a test which shows the electrical out put in the brain.The on site will last about an hour. The other EEG is one that they hook up and the equipment is taken home and it can last or run for 2-4 days. When I had my last I had to go back to an office and they changed the batteries and downloaded the information. If either EEG shows abnormalities for the neurologist it means that your son has seizure activity and the area it comes from will be known. There are many times that EEG's all come back normal. The main reason for that is the activity is deeper in the brain. I would suggest that if your son has another episode by any means video it and show it to the neurologist. It would help him/her with the diagnosis Trileptol is a good medication and it does work well. I used it a few years ago. It could help stop the seizures while the tests are done and a diagnosis is made. It may stop your sons seizures and like the neurologist stated he can always be taken off the medication. The longer the delay the worse the seizures can get. As for the MRI. It could be helpful. I say that because I had 15-20 different EEG's all show up normal. They ran a battery of tests one of which was the 1960's version of todays MRI. All of the etsts came up normal nothing could be found. The last test was another EEG. In that EEG I fell asleep and in that EEG they found seizure activity. Knowing where the activity came from the neurologists then went back and looked closer at the neuro-angeogram and they found scared brain tissue. That scar tissue was from a hemorage to the brain. The hemmorage was caused from a blow to the head between 6-8. SO if the in site EEG is normal they might see activity in the longer one which is a portable unit. He will be wearing the unit while he sleeps . I hope this helps you understand a litle more and your son gets the assistance he needs

Just from personal

Submitted by charlesworth.mark@gmail.com on Sat, 2014-08-16 - 22:48

Just from personal experience, when I was around that age (up until I was about 13), I would cry out in the middle of the night (I am not sure what I said) and my parents would bring me into their room and try to awaken me. I would have some awareness of what was going on, but had no control. When I was 13, I finally had complex partial seizures which explained all that happened in the past (including auras which were simply feelings of fear). To keep it short, after two surgeries (1988, 1990) at UCSF, the seizures were controlled, but I still had anxiety auras, although I did not recognize them as such. After many years, I came to see the connection when other types of auras developed. Thanks be to God, Just one year ago, at the age of 43, everything has been controlled! The key factors were getting a sound night's sleep (quite location and all in one sweep) and finding and remaining on the proper medication (for me, Tegretol). I hope you find a good neurologist, because what you described sure sounds similar to my case.