I can usually go about my day and not give Dylan's diagnosis a second thought because I think of us as a "normal" family, but Thursday night I got a little reality check. When I went to check on him before I went to bed I found that he had vomited and as I picked him up he felt very hot and it seemed like he was having a seizure. His eyes were rolling back, he was grinding his teeth very hard and his whole body seemed to be in a contracted state. We tried to get his attention by calling his name and patting his back but he couldn't focus. We decided to go into the ER, luckily the hospital is just a few short miles away and I ran in holding him close and cut in front of a lot of people in line and said " I am so sorry but my son is having a seizure!" (to my surprise as I said this the tears started to flow). Everyone moved nicely aside and they took us back. Once I laid him down he seemed to be coming around and was grabbing at the nurse's stethoscope. His temp in the ER was 101.8. They gave him Tylenol and Motrin and checked his blood and urine and did a chest x-ray - everything came back OK and the doc thought he just had a virus that caused the febrile seizure. We were in the ER until about 3am and then they let us go home.
This scared me to death and to be honest it made me think, "is this going to be the horrible seizure that takes him from us?" It reminded me how fragile Dylan really is and it made me sad. I was once again asking, "why did this happen?" "Why did our child get diagnosed with this rare syndrome?" ARGHHHH! It isn't fair! If Hailey or Luke had a fever of 101.8 they wouldn't have a seizure. I could go on and on, blah blah blah... but then it made me think all weekend about how fortunate we are that Dylan is fine and has only had two febrile seizures in his life. I spoke with his Neurologist today and his latest EEG was normal. I know that seizures could always be a possibility but I am thankful today that he is not on any medication and besides having a rough couple of days following the seizure and his body fighting off the virus he is completely back to the same old happy Dylan.
Arghhh! Not fair is right. I can't imagine how scary, But the normal EEG is definitely good news, right? Frankie just had an abnormal EEG even though we haven't ever seen any seizures. So confusing and upsetting. We meet with the neuro in another week to discuss what it means. glad to hear that Dylan is back to his happy self.
ReplyDeleteSeizures suck!! I am so sorry Dylan had another one. I hope it is his last ever!! Sending love.
ReplyDeleteOh, no... Don't say that... Don't fall down now... Seizures suck big time, and the experience is so scary...but it will be forgotten soon... I promise. Big hugs for you and Dylan. Be strong.
ReplyDeleteSo sorry to hear Dylan had another seizure, it's always so scary. Brodie has had 3 febrile seizures and 2 were pretty subtle but his EEG was pretty abnormal which is when we decided to start Keppra in December and it has been really tough for Brodie, lots of ups and downs, sleepless nights, behavioral issues, all side effects since starting Keppra. We chose to medicate hoping it would improve cognitive function but if it has it hasn't been drastic. So I wish Brodie would have a normal EEG and I would feel comfortable taking him off the med. thats where I really feel frustrated about the syndrome- in regards to seizures its like we can't win either way:(
ReplyDeleteI am really new to your blog. I found it through a link. I have a child who might be having seizures. I am curious what they do in the ER if you cme in with a kid who had/is having a seizure. Do they just keep you under observation for a few hours? do they do an EEG? Thanks in advance!
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