Teach Your Child Self Control

Last time Jace was in a non-convulsive status epilepticus state no one was aware until they read the EEG. Looking back the only clues were had was excessive spitting up, not being himself and sleepy. His neuro told us to look for these signs and call her or bring him in if we are concerned.

After noticing Jace refluxing and not acting himself the past couple days we decided to contact his neurologist to let her know. She told us to contact her since she would be able to get an outpatient EEG set up quicker than for us to go through the ER, unless it was afterhours then we were to go into the ER. Well I contacted his doctor’s nurse and she paged the doctor. The nurse called and said if she doesn’t call back in 10-15 mins to call her back. So I wait 30 mins, no call back so I called the nurse and left a message again. I received no call back after that. Actually I received no call back from his doctor at all that day. Once I got home I got Jace ready and we went to the ER. I understood that getting him in for an EEG was the route to go. It would be easiest to go through the doctor but I had to do what I could. We went to the ER at Children’s Memorial Hermann and they checked him out there. To make a long story short, the doctors on call do not know Jace’s history which is complicated, complex and lengthy. After they told me they were just going to discharge him and brought me paperwork about fussy babies I just about lost it. I told them I was NOT comfortable just going home and nothing being done. Finally a neurologist called the attending AND Jace’s neuro. His neuro felt that Jace could wait until the next day to get an EEG done since at this point it was after the EEG department was closed and his state was not “emergency” enough for a STAT EEG. His neuro wants us to return for a routine EEG tomorrow and a follow up appointment on Friday with her. We agreed to this and were discharged. What really got me was that the ER still discharged Jace with a diagnosis of a fussy baby. ARE YOU KIDDING ME?!?! I literally was sent home with paper work on how to handle a fussy baby. He was brought in for epilepsy or seizures – not because he was “fussy”!

My mom and I were laughing about this. How ridiculous! We were reading the discharge paperwork and it says “Teach your child self control. This way they are responsible for themselves. Teach them to breathe slowly when they are upset. Teach them to relax and thing about something peaceful or calming like petting a puppy or kitten or something that make them happy. Praise them when they calm themselves”

So, I guess we should teach Jace self control….I mean being fussy when he is having episodes is not acceptable! *eye roll*

In the end, I am a little perturbed about all of this. The ER visit, the doctors brushing off the possible situation and most of all - his doctor never returning my call yesterday.

I do not know what time the EEG will be but I will update once I get more information.


OH and to add.......they did tell us to increase his Sabril to the next dose up.
So starting last night he has reached his goal dose of Sabril.