Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Hi - I am new to the group, and am hoping some of you that either have experienced seizures or know more about them than I do will have some advice. I apologize in advance that this is so long...
In a nutshell, my 5 year old son had a big seizure two nights ago. We heard him fall out of bed and kind of thump around. When we went to him, he had defacated and vomited, was unconscious. We, of course, called 911 and he was rushed to the hospital. When he was finally able to open his eyes a little, he was unable to speak and was paralyzed on the left side. He was like this for several hours, and he slowly regained the ability to speak and use his left side. They did an MRI (showing nothing but the spot where he had a moderate brain hemmorhage at birth, on the right side) and an EEG, which they did say was abnormal and focused on the right side. They concluded that he was having a seizure as a result of the brain damage he had from his hemmorhage. After a few days in ICU, they have sent us home with Tegretol and diazepam, though I am still completely terrified that this will happen again. Although I am certain he never had an event this big before, I am now wondering if some things that happened in the past may be explained by his having seizures. For example, on a number of occasions he vomited at night (never coming to get me) and then seemed sleepier than ususal the next day. I, and his doctor, thought he just had a touch of stomach flu. He has always shown behavior changes when he gets tired - for example, he speaks in gibberish and kind of says the same nonsense words over and over, although he can, if I ask him to, speak in English, too. His neurologist said she expects the medication will help with that. There have also been times where he woke in the night seeming really confused, but I just thought he was sleep walking or something. The neurologist said it is possible for people to have primarily nocturnal seizures? And they said they thought this bigger event was most likely triggered by his being exhausted after a vacation we just got back from (the day of his seizure) where we were super busy. He is a 5 year old, and a very active one at that, so I am racking my brain trying to figure out how to make him rest and take it easy more.
So... I want to do everything I can to make sure that I am aware when something is happening in him - especially since it seems it might most likely happen at night. I thought about a video baby monitor? My mom thought maybe something that would alert me if he wet the bed since she thought that might be a sign that he was having one. Are there any signs to watch for that would let me know one is coming? Any advice at all, or resources I could use, would be much appreciated!!!
In a nutshell, my 5 year old son had a big seizure two nights ago. We heard him fall out of bed and kind of thump around. When we went to him, he had defacated and vomited, was unconscious. We, of course, called 911 and he was rushed to the hospital. When he was finally able to open his eyes a little, he was unable to speak and was paralyzed on the left side. He was like this for several hours, and he slowly regained the ability to speak and use his left side. They did an MRI (showing nothing but the spot where he had a moderate brain hemmorhage at birth, on the right side) and an EEG, which they did say was abnormal and focused on the right side. They concluded that he was having a seizure as a result of the brain damage he had from his hemmorhage. After a few days in ICU, they have sent us home with Tegretol and diazepam, though I am still completely terrified that this will happen again. Although I am certain he never had an event this big before, I am now wondering if some things that happened in the past may be explained by his having seizures. For example, on a number of occasions he vomited at night (never coming to get me) and then seemed sleepier than ususal the next day. I, and his doctor, thought he just had a touch of stomach flu. He has always shown behavior changes when he gets tired - for example, he speaks in gibberish and kind of says the same nonsense words over and over, although he can, if I ask him to, speak in English, too. His neurologist said she expects the medication will help with that. There have also been times where he woke in the night seeming really confused, but I just thought he was sleep walking or something. The neurologist said it is possible for people to have primarily nocturnal seizures? And they said they thought this bigger event was most likely triggered by his being exhausted after a vacation we just got back from (the day of his seizure) where we were super busy. He is a 5 year old, and a very active one at that, so I am racking my brain trying to figure out how to make him rest and take it easy more.
So... I want to do everything I can to make sure that I am aware when something is happening in him - especially since it seems it might most likely happen at night. I thought about a video baby monitor? My mom thought maybe something that would alert me if he wet the bed since she thought that might be a sign that he was having one. Are there any signs to watch for that would let me know one is coming? Any advice at all, or resources I could use, would be much appreciated!!!
I left several articles/sites in my previous post to 'need help' (under your post) If you have More questions after browsing those sites, let me know. :) I think the Stress links are appropriate. Since lack of Proper sleep is a Large contributor/Trigger for Stress/seizures. :(
As for Nocturnal seizures. Yes, a baby monitor w/ video & Sound will work for you. Chek your thrift stores. :) Use one in the bathroom, too!
There are bed seizure monitors that will alert you. They are still quite expensive though. Let me know if you want/need more info on these.
MOM, if you follow the directions for Proper seizure 1st aid, watch his diet & sleep, you will do fine. Also start keeping a journal (clik on green letters. :) )
Above all else, keep treating him as a 'normal' child. Let him do what he is accustomed to. I don't think the Doc meant he was tired from being 'typically' active. Just tired from Stress of traveling & sleep patterns.
Yes, from what you said, sounds like he may have been having spells for a while. Here is a site that explains all seizure types. (good to know cuz seizure Types can change over the yrs.)
http://www.faqs.org/faqs/medicine/epilepsy-faq/
Above All else. Keep educating yourself & those around you & your son. Educate your son, too. Books are listed on the Epilepsyfoundation.org site for All ages. :) Hand puppets will help you explain/demonstrate things to your child. The EFA will, also, if asked, come visit his school & help educate teachers & students. (No names mentioned :) )
HUGS! Love Candi
I hope we didn't overload you. :) Just bookmark sites that Help so you can browse them at leisure. And so you will have them for future ref. :)
Molly, I know his seizures are scary. But, the Only time you have to Really worry is if he hurts himself (Rare for us, although it seems it would be more frequent. But, there are no stats for that Issue. I am basing it as 'Rare' from the Numerous posts I have read over the past 25 YRS. :) ) or IF a seizure continues Non-Stop (no break between episodes. Again, this is Rare for us but can happen) for over 5-10 min. Used to be 20 min.
A Research article I read, not to long ago, gave me some reassurance about our seizure activity. :) The author/Researcher pointed out that Somehow our brains Know when we have had enough & will Stop seizures in 30 secs to 2-3 min, depending on seizure & person.
You mentioned that he has Nausea & throwing up. Ask your pharmacist if you can give him anything to relieve his symptoms. But, Most Important: Keep him Hydrated.
Here's the links for the beds. Last time I priced them, it was Cheaper, even w/ S&H, to order them from the UK.
http://www.easylinkuk.co.uk/page4.html
http://www.sleep-safe.co.uk/id90.htm
USA: http://www.medpageusa.com/bedmotion.html
http://www.medpage-ltd.com/page64.html
These sites are several Yrs old & there may be other spots in the US that have them available at this time. :)
Molly, I Know it's Hard not to worry. But, w/ Knowledge & experience your worries Will lessen. I promise. And hon, You need your Rest, also. Caretaker Burnout will not do either of you any Good. Cuz, he will sense you are stressed from Lack of proper sleep & worries & that can Stress him
Also do a Search or ask your Pharmacist about Medical ID's. :)
Keep us posted. Know I care. HUGS for you & Yours. :)
Love Candi
Thanks for the advice, too, about the nausea meds and medical IDs - I'm going to check in to that for sure...
Well, I just 'talked' w/ someone on Tegrestol on another site. Seems Mood Swings can occur w/ Tegrestol. I think adding B6 to his daily multi-vitamin may help. I know it helps eliminate 'Mood Swings for those on Keppra. So am assuming it would work for any other AED (anti-epileptic Drug) It's been suggested to increase B Complex Vitamins, too.
IF you do increase his Nutrients, be sure to discuss it w/ his DR, too. But, your Pharmacist (again) is usually your best source of Info about our meds & the Need for Supplements & How much you should give him. :)
But, I would give his system another week or 2 to adjust to the Tegrestol, first. Some times Side effects of meds diminish /disappear w/in 4-6 weeks.
Mom, if this is confusing him, here is the site/page for that list of books. The sooner he Learns More the better. :) http://www.epilepsyfoundtion.org/local/efneny/books.cfm
Chek w/ your Local Library for Availability of the books. Ask the 'Research Librarian'. I was told That is their Job. :) If not available, then you will have to buy them from Amazon.com or chek w/ Used Book Stores. :)
Keep me posted. HUGS!
Love Candi