Thursday, November 10, 2011


My, oh my, time certainly does fly.  I really need to update this blog more often; one of my identifiable fears is that I will someday wake to a different life having little memory of my current life’s daily musings.  Thus, feeling cheated that I wasn’t even at the party ;)

I need to provide an update on the E.M.U. stay Ava had shortly before Halloween; I’ve probably shelved important items not ready for storage yet so here’s what you get.  We checked in around noon on a Monday and she was hooked up for monitoring by around 3:00 that afternoon.  I didn’t notice anything crazy on the monitor (in regards to self-marking spikes and events) until her normal 5:00ish breakdown.  It has been 3-years since we have done any monitoring though, especially extended.
(Sidebar to this is that I am not sure what exactly all those events and spikes mean, I do know it isn’t ‘normal’ or what you would hope to see at frequent intervals)

The show on the monitor got even better at bed time with markings going on about every half to thirty seconds, followed by events about every 5th spike.  She didn’t get to bed until around 10:00ish and was awoken for the final time around midnight, no thanks to the pulse ox.  We then got to party the wee hours away on the 6th floor to my dismay.

Lucky for me, the morning nurse gave word that we were going to be released, have the hat removed and a visit from the doctors before lunch time.  Hooray, I am used to this process taking all day.  I asked about twenty times if they were sure they caught enough information to discharge us and if they were sure she had actually slept; at least a little.  Yes ma’am was the sentiment…code talk for psycho/sleep deprived/lunatic to them I suspect. 
Around the same time the EEG tech was trying to beckon my assistance for removal of the damn glue on Ava’s head, the doctors showed up to explain what they saw.  I was a bit distracted but I did at least hear this:
Ava’s daytime EEG has improved significantly; we’d like to keep her on the diazepam because we think it is keeping her ESES/CSWS at bay.  Ava additionally has started to demonstrate myoclonus, she was having burst of seizures while the screaming you noted took place.  At this time we would like to continue treating Ava at the epileptologist level while collaborating with the neurologist in the metabolic clinic for an appropriate plan for diagnosis and follow up care.  We have Dr. Benke on board already with neuro-metabolic visit in April and would like you to consider seeing Dr. Collins at some point.  Dr. Koh, Dr. Keetor, and Dr. Brooks-Kayle are all part of the epi’s she has already seen that will continue to help us get this screaming under control.   We will see you back in 6-8 weeks for follow up and discussion of the entire study.  We WILL collaborate to care for your daughter.  Prior to the stay I was once again told by these very Drs, ‘this probably is behavioral, children usually don’t scream while seizing’. 
What???  I am NOT crazy?  At least as crazy as you once thought?

Nearly 4-years later my suspicions are finally confirmed that Ava gets abnormal brain activity that drives HER out of her gawd damn mind.  It can drive anyone around her out of theirs too.  The disregard and questions I have faced in regards to this screaming situation have done a number on my well-being; I have learned some good, hard lessons on trusting my gut, her Dr.’s, and general advocacy.  We are at a new fork in the road, in some ways many more questions than answers are present.  However, it is a good place to be from my vantage.  They spoke of possible varying sensory disruptions and our old friend migraines as being a probable part of her days; this is not nearly as surprising to me as it might have been to them.  Folks, she isn’t like most kids, not even most sick kids.

At least I now feel very good about the new set of M.D.’s involved in Ava’s care at TCH since our visit to the EMU.  We have survived being told to find neuro-psych (which we all agree now that she does not belong here) outside of TCH, fighting our way back into an appointment with an adequate epileptologist and lastly a visit to the EMU for some proper monitoring for descent direction on drug use.  They have been in touch with me via phone to check on Ava…this is a far cry from our last neuro’s commitment. 

I just might get a chance to breath.

I’m sure we will have bigger fish to fry sooner rather than later, as this story seems to consistently go.  She is responding well to her first 3-weeks on zonegran.  We have also moved her melatonin up to 6mg with the possibility of 9mg.

I’ll chat at you krazy kats soon.

By the way, November is epilepsy awareness month, go get seizure smart.

No comments: