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15 month old son starting to have possible seizures
Mon, 06/18/2018 - 16:57Topic: Parents & Caregivers
Hi. I'm so new to this and we haven't got a clear diagnosis yet. My 15 month old son goes to the pediatric neurologist on Friday. I just wanted to say what's been going on with him and see if anyone has similar experience. First my husband noticed on two different occasions were my son's left leg would jerk (he said almost like a muscle spasm) for a about 15-20 seconds and just quit. Then we both started noticing 4 times now that our son will just "stare off" or "daydream" and we can not get him to respond, look at us, or anything when he does this and it lasts about 30-45 seconds. We really didn't give these incidences very much thought because kids can do these. It wasn't until June 9th we put my son in his high chair at about 8:30 for a late supper and gave him his pizza. He was eating then all of a sudden his whole upper body started shaking/jerking like he was cold or something. We felt of him and his body temp. was normal. His legs never did twitch or jerk that we seen. Then I ran and got my phone to video it by the time I got back he was just jerking on his left arm and it was drawn into his chest. When he tried to straighten it to help himself eat it was just jerking so hard he could barely use it. He was alert the whole time and trying to eat with the other hand. After the jerking stopped his eyes looked so tired and he looked pale. He finish eating a few more bites and then was ready to bed and went straight to sleep all night. This is when I took him the Children's hospital ER. They was stumped (in their words) if this was a seizure or not. It was a couple days after so they wanted him to see the specialist in that clinic instead of doing a bunch of test with radiation that maybe the specialist wouldn't need. I'm a Registered Nurse and as my gut as a mom tells me something just isn't right. He is normal playful, kind of whiny at times anymore, boy. He is meeting all developmental stages on time. If anyone has had anything similar or anything please share. Friday can't get here soon enough so maybe I can have some answers.
Comments
Thank you so much for the
Submitted by amandawright2829 on Mon, 2018-06-18 - 18:28
Thank you so much for the comment. I know that this is going to a long road and many test and maybe not even a clear diagnosis for a little bit, but I'm defiantly going to follow up until something makes sense. I'm hoping it's something with his growing which they said it could have been (I don't believe that) but I'm really thinking partial/focal epilepsy.I'm sure you've been here or you wouldn't know so much about it. I hope all is well with your child and you have gotten answers you need.
Clearly something is wrong
Submitted by Amy Jo on Mon, 2018-06-18 - 17:28
Clearly something is wrong and it sounds like you'll follow up until you get a diagnosis that makes sense. Glad you are listening to your gut and will see this through. For most an emergency department isn't set up to diagnose epilepsy, most cases are not a life critical emergency and the follow up wheels of neurology are freakingly slow. There is no definitive test for epilepsy. The neuro should get a comprehensive history (and have a good idea if it is epilepsy but epilepsy can look like a crazy number of other things so some neuros don't read more unusual situations well). The EEGs take time to schedule, there are a variety of EEGs and for many with epilepsy it can take three well chosen EEGs to get helpful info, some people won't get any useful info with standard EEGs because the seizures are too deep to register and placing invasive EEGs can also be hit or miss. Normally developing kids can have epilepsy or they can have normal development until seizures start, often parents go on and on about how normal a kid who was just diagnosed was, it's a big shock to their system => it takes time to come to grips with new realities. All said, do not be surprised if the diagnosis is partial/focal epilepsy.