Status in the social media world just means saying something that is going on in your life. But in the world of seizures STATUS is probably the most scary word other than SUDEP.
SUDEP stands for Sudden Unexpected Death in Epilepsy and I bet you can guess what that diagnosis means.
Status mean you are having lots of seizures and are having a hard time getting them to stop even with emergency meds called rescue meds. Usually it means a single seizure lasting more than 5 minutes or at least 2 seizures within a 15 minute time frame.
More on that in a minute.
Ellie has been fighting an ear infection. It started 3-4 weeks ago. Her left ear was draining. I called her Pediatric ENT like I usually do to get ear drops called in. They will usually do this for me no problem and I don’t even need to come into the clinic. Well for some reason this time they were being sticky about it. They said she needed to be seen in clinic before they would do it because she hadn’t been seen for over a year. I said that was fine, I could come in, but would they please call in an RX in the meantime. She said no. She said go to your pediatrician. I tried calling back later in the day to talk to my normal nurse at the ENT clinic, but got the same lady. Grrrr...
Anyway, to make a long story short(er), we went in to ENT 2-3 weeks later. By the time we made it in the drainage had stopped. We discussed how she has been getting more ear infections lately. She has had the same set of ear tubes for over 10 years. We discussed the possibility that the tubes could be holding onto bacteria thus causing recurring ear infections. He also mentioned that perhaps she didn’t need tubes anymore since it has been 10 years and maybe they were just irritating her and her body was trying to get rid of them. There could be other reasons that she is getting recurring ear infections, but to rule out the 2 reasons I listed we decided to pull out her tubes right there on the spot. Some types of tubes you can do this and some you can’t, hers were the type that you can.
The ENT did see some drainage in the left ear even though it wasn’t actually coming out of her ear for me to see. So he had us do a course of ear drops (ofloxacin).
At some point during the course of ear drops I started to see drainage from the ear. As we finished up the ear drops I called the ENT to say that we were still seeing drainage. He started her on Augmentin as well as had her continue the oflaxacin ear drops for 10 days.
The last few days of antibiotics we were still seeing drainage ( blood tinged) from the ear and she started having seizures. On Monday I called to get back into ENT and made an appointment for Wed ( today).
When she is healthy she has zero seizures. This is known as “ well-controlled” seizures. When she is sick or having her period she will have seizures. To keep her seizures well controlled she takes 750 mg of keppra twice a day.
On Sat and Sun I saw some seizures so I added an extra seizure med we had on hand called vimpat. We normally add the vimpat during her periods to help with seizure control.
On Monday her seizures were out of control. I had to give a rescue med (rectal diastat which is Valium). This stopped the seizures but also made her go to sleep (which is ok).
I called her neurologist to see if we could go up on any additional seizure meds while we figure out the ear infection. She gave me a plan to increase her vimpat over the next few days. I asked if I could give anymore diastat and she said not for 24 hours. We also always have a plan that I can give additional keppra as a rescue med as well, so I double checked that I could still do that if needed even though I had given the diastat and she said yes.
When she woke up Mon night she started having seizures again so I gave the extra vimpat. It was now bedtime.
In the morning (Tues) when she woke up she was having more seizures. I was maxed out on rescue meds, there was nothing more I could do at home.
Jason left work and Ellie and I headed to Primary Children’s Emergency Department.
They officially said she was in status. Not to scare you, but just truthfully, people die from being in status if you can’t get the seizures to stop.
She was given Ativan ( IV Valium) in the ED. This knocked her out again as well as stopping the seizures.
Her shunt looks good, blood looks ok, urine looks ok, lungs look questionable. She might have pneumonia, they can’t tell. In the ED they said both ears looked mottled, like they were healing. They did not see anything alarming in the ears.
They admitted her to NTU (Neuroscience Trauma Unit).
When she woke up later Tues night she had more seizures so she was given more Ativan.
When she woke up Wed morning (today) There were more seizures and more Ativan.
When the team rounded Wed morning we discussed possible pneumonia etc.
Once they examined her they said they can see fluid in the left ear. Thankfully. This means the ear infection hasn’t gone away. Answers are ALWAYS better than no answers.
The bad news is augmentin may not work for her anymore.
They have not come up with a plan, but I am assuming a new antibiotic is in her near future.
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