Thursday, May 16, 2013

some good-ish news

Good-ish news about the dizzy spells that Trevor has been having.



He had a doozy of one at school this week.  Around 9am his CNA noticed his legs shaking during circle time.  The kids were standing and he was clearly having trouble holding himself up.  She decided they needed to visit the nurse’s office.  During the walk there Trevor stumbled into the wall twice and told her the room was shaking.  This prompted her to carry him the rest of the way.  Once in the nurse’s office he fell asleep.  Usually after he rests he’s back to baseline.  Not this time.  This time he remained wobbly the rest of the school day.  He was still off balance when he came home too.  In a matter of five minutes he tripped while running twice and lost his balance a handful more times.



I stood there storming in my heart about what the heck to do.



Even though he was falling all over the place…his mood was great.  I just knew the ER doctors would laugh me all the way back home. - Six month report - Mozilla Firefox 5162013 33740 PM

(I mark his dizzy spells as “unknown”.  I don’t track all his seizures faithfully but I’m trying to.  Hard data is so important.  Which is why I have to put in a plug for Seizure Tracker!  I was able to send a report super quick to his neurologist in just a few clicks!)
So I called Dr. Neuro instead and left a long message about how I didn’t know what to do and I needed them to coach me through this and there was a little crying and a lot of stuttering.  Which may explain why Nurse Boston was SO amazing!  After we spoke a gazillion times yesterday I anointed her my new BFF.  Which made her laugh and me feel a little better.



Dr. Neuro decided we should come in the morning for a clinic appointment and she would admit us through the ER.



We had it all arranged.  The kids and doggie were at Grams’.  I notified everyone I could remember to that Trevor would be otherwise occupied.  We were packed and ready to go this morning when I got an email with the subject line: IMPORTANT.



Last night, Dr. Neuro was on the phone discussing Trevor with Dr. Neuro-Surge when the truck in front of her lost a ladder on the Mass Turnpike.  She’s blessed to be alive with minimal injuries today.  We’re lucky she’s alive today too…because I can’t imagine another neurologist working with us!


But obviously this changed our plans for today on the fly.  While there was a part of us that wanted to be admitted.  To figure this crap out already.  Another part of us was so relieved that we can just stay home.  There is something about the harder times that make us crave being at home.  Being hermits. 

Dr. Neuro and  Dr. Neuro-Surge came up with a Plan.  Together they agreed that we need to rule out a few things before we chase hydrocephalus too hard. 
Could this be a med effect?  Even though his levels are all safely in the therapeutic range when we do labs there is a possibility that when the meds peak it is causing an overdose event.  We’ve already started weaning Dilantin a little bit to rule that out.  
Or is this a seizure?  It doesn’t look like any seizures he’s had in the past but that really means little when you’re dealing with catastrophic epilepsy.  I have no doubt what we saw in Florida was indeed a seizure.  It keeps replaying in my mind over and over and over and I just know that I know what it was.  But then it was different in some aspects than the other events we’ve been seeing.  It was like his dizzy spells on steroids.  And it still haunts my dreams. 



Could it be migraines or vertigo?  This is harder to prove.  But we’re going to try and rule it out.

Once we establish that none of the above are the cause of these episodes it will be time to get more aggressive with the pressure idea. I needed Dr. Neuro-Surge to agree that he is at risk because of his hemi and that there are cases where the scan is clean but there is a pressure issue.  She did.
I've needed to feel like it was being taken seriously.  I do (now).
And I feel like at least now we have a legitimate plan. That helps me feel MUCH better.
And actually, his Dilantin level was slightly elevated yesterday. Maybe his Dilantin is too high and that's what causing this??  Maybe the decrease we started today will cure these??
It just feels SO much better DOING something rather than hem hawing.  We have a target.  I do much better with targets.






ps.  Aren’t you impressed with my lengthy update???  I accomplished it by setting a timer for 20 minutes.  I then delegated one 20 minute shift to Bristel and another 20 minutes to Toby. 


charity said...

hope you guys figure out what is going daughter has been having an increase in seizures so now we are trying to decide do we wait and see how it goes or do we up the meds or totally switch the meds.

happy's mommy said...

Trev's seizures had started creeping up over the fall but I was trying to ignore them. I didn't get really serious until his dizzy spells started increasing. Then I went all Seizure Tracker happy. It's so hard and heavy sometimes that it's all I can do to move through the day...never mind make serious decisions too!

Have you tried Onfi yet? We just started it with Trevy and it's helping his clusters. Too soon to know anything for sure but a lot of my seizure friends have positive things to say about it.


charity said...

no we have only been on keppra. iv heard onfi is good and iv also been told to have her put on trileptal by her therapists. i second guess myself about seizures like is it a seizure or am i imagining thing, but i know its seizures and iv recorded them for the dr. i track her seizures on paper

Barbara TherExtras said...

"good-ish" is exactly correct!

You are one heck of a storyteller, D. Perhaps in your next phase of earned income you could be a screenwriter - ?

What.are.the.chances!!?? that your neuro MD gets slammed with a ladder on the road!!??

Will be back to find out what next...