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6 year old- 4 years seizure free and now ???

Tue, 03/13/2018 - 17:35
Hello, I’m new here! My oldest daughter is six and started having grand mal seizures out of the blue at six months old. She had 1-3 per day between 2-6 minutes long. We tried a few medications and she eventually responded well to lamictal. She had two break through seizures before she turned two but since then has not had any seizure activity. She had a 72 hour EEG three years ago that came back normal so she was weaned off of the medication and has been unmedicated since then with no incidents. I was thrillled that it seemed she had outgrown it and we could say goodbye to epilepsy forever! Yesterday however she had a strange episode that was not a typical seizure but I’m not sure what it was. She was standing up painting at a table and she said suddenly felt intense pain in her head, and felt very dizzy and weak. then everything “went tie dyed and then black” but she didn’t fall down. When she can’t to me her face had no color and her lips were bluish and she was drenched in cold sweat. First i thought maybe she was sick with flu or somethinh because sometimes that comes on so suddenly so i had her lie down and drink some water. She fell asleep for about thirty minutes and woke up kind of out of it but clearly not sick and all her color was back. I called the pediatrician and they said we could come into the office and didn’t think the ER was necessary because she seemed better. By the time we were there she was completely back to herself. Let me note: she had been eating and drinking normally, had no other signs of dehydration or anything. She was indoors in 72 degrees so no heat stroke or anything like that. The doctor ran preliminary blood work that didn’t show anything and gave us a neurology referral. We moved to a new state so we don’t have a neurologist here and i called every neurologist in the state that takes our insurance and the earliest appoIntment i could get was in a month. I kind of wish I had just taken her to the ER so we could get more answers immediately. In the past, she actually never had seizure activity show up on an EEG even when she had multiple seizures in a day. The only way I even got them to admit her to the hospital finally was by taking videos of the seizures on my phone so they could see what was happening and make a diagnosis from that. I have pictures of her from this episode but I just remember the whole process with beurologists being extremely frustrating and traumatic. I am just so afraid that something else is going on right now but I have no idea what this even is. The pediatrician has no idea either. I am going to call the neurologist we have an appOintment with in April every day to see if we can get in to a cancellation spot but I am not even totally sure this is a neurological issue that’s just the only thing I can think of because of her history. Today she has been fine but I’m a little beside myself. Does anyone have any suggestions????? Thank you!

Comments

many different types of

Submitted by just_joe on Tue, 2018-03-13 - 18:36
many different types of seizures and in them the person does not fall down. All of the  things you posted are in different types of seizures. cold sweats blueish lips pain in the head and being weak. As for what happened after her being laid down. The seizure might have been over but there is a postictal state The postictal state is the altered state of consciousness after an epileptic seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures. with most of the seizures I have had rest and at time sleep gives the brain time to get back to normal. It also gives the body time to get back to normal which is why she looked and felt fine while at the doctors office. Now you have posted grand mal seizures. Are those the only type of seizures you have seen her in? Have you ever saw her daydreaming? Absence and focal seizures look like the person in them is daydreaming.Relax because neurologists know a little more then you do and you do have the video if what you saw her in. Wishing you had taken her to the ER is not the thing to do since the tests they do wouldn't help because they know little about epilepsy and the different types of seizures. Many of the ER's I have been taken to never ran a EEG. They did blood work and a ECG but after the seizure and a short period of time I was normal. It just cost more money since I knew what had happened but the EMT's wouldn't let me go home which was only half a mile away from where I was when they had been called by someone that didn't know what was happening. If you call the neurologists office you might want to ask if you can send the video because it might be all they need in order to set up an appointment since you can tell them what happened and when and why she was taken off meds. You can also get the medical records from her old neurologist to be sent to the new one.At least you have starting points like her previous neurologist and the seizures she had been having and the medications she has used. All of that can help and assist in the treatment as well as the diagnosis. Understand too that her body has therapeutic levels for many different things and one of them is seizure control. She might have had herown therapeutic level keeping her from having a seizure up until now. If she has grown much then that level might not be as high as it needed to be to stop  this seizure..I hope this helps and she gets seizure free againJoe

Joe, the video she mentions

Submitted by Amy Jo on Wed, 2018-03-14 - 09:32
Joe, the video she mentions is from years ago, not the current episode. Please stop telling people to relax, it’s super patronizing and does not help the person you are responding to. 

Joe, the video she mentions

Submitted by Amy Jo on Wed, 2018-03-14 - 09:59
Joe, the video she mentions is from years ago, not the current episode. Please stop telling people to relax, it’s super patronizing and does not help the person you are responding to. 

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