ABCs

How is I don't know for the answer?

Truthfully, we are in a rough spot. 

A.  We need a nanny!!
B.  I'm having more seizures than I thought.
C.  We got some news today that I'm not handling well.

A.  Consider this a job posting!  We are in serious need of a wonderful nanny!  We had a precious angel of a nanny that had already agreed to work for another family once their baby was born when we hired her (we really thought I would be completely healed by now).  So, she has had to leave and is now lovin' on their kiddo.  I can not be left alone with Miss P because of the seizures (and a new development that I'll share later) and B can't stay here all day.  He has to work.  Mom has come over a few days this week and a sweet, sweet friend came by this morning so that B could get to an appointment.  It is such a blessing to have someone here consistently that knows P and her schedule and keeps her life somewhat normal no matter the type of day that I am having.

So, we need someone that:
-can be here M-F
-has some experience with kiddos
-has a flexible schedule (if I have doc appts that run too long or if I'm rushed in to the hospital like I was last week, we need someone that could accommodate quick schedule changes).
-is comfortable with the fact that I have seizures.
-can accept what we pay.  We have had so many precious friends sacrifice financially to help us pay for a nanny and we want to be respectful of their sacrifices (as we understand it, we are paying close to what a substitute teacher in our city would make each day and for better hours, if I'm not mistaken).

Please send people our way if you think they would be a good fit.

B.  This last hospital visit was enlightening, as we're calling it.  Basically, what I've always referred to as a seizure is the post-ictal (after seizure) effect on my body.  The seizure is actually what I've always referred to as an aura.  Each time I've been hospitalized (at other hospitals) and they've done EEGs, they've agreed that each time I told them I was having a seizure, I was...they didn't share all of the times that I had one that I didn't tell them or that I was pressing the button after they saw the seizure on the screen.  The hospital that I was at last week made a point of coming over the speaker or coming in to the room each time that I showed seizure activity on the EEG.  These "visits" all happened during what I call an aura and then what we've always referred to as a seizure, followed.  Thus, they were already in the room before I had what I call a seizure.

So, there are days that I say I feel like I'm sitting in an aura, that it just won't go away.  However, it's never progressed to what I call a seizure.  The doc taught us that many times this happens when the seizures are very deep in the brain (as the docs in Houston found during my brain surgery-so deep that they couldn't actually find where they started) and the seizure never manifests itself physically.  Does that make sense?  So, the aura is actually a seizure and it takes that long for it to work it's way to a part of my brain that would create a physical or outward manifestation.  I hope I'm wording that correctly.  Point being, I'm probably having a lot more seizures than we really thought.  So, doc is going to order a home EEG to try to catch more of these events and see what's truly happening.

C.  As B mentioned in one of the recent posts, I've just not been feeling right lately.  We had started to see better seizure control in November and early December (less than 1 per day and one week I only had two seizures the entire week!!!).  Then, things got out of hand the last few weeks of December (two days in the last week of December I had nine each day).  When we left for Houston things just weren't right, but the docs have basically said there isn't much they can do to treat them when they get out of control since they are so stumped on why they aren't responding to normal treatment or rescue meds.  Again, something just didn't feel right, but I couldn't explain it.

When we got home from Houston and came home to meet the nanny, I struggled to walk all of a sudden.  My left leg was turning in and dragging behind me.  We didn't think much of it because I was struggling to exist with the seizures and migraine.  So, we never even mentioned it to the docs.  Once I was back home, it started again...I could just be standing up and my legs would give out from under me or walking and my leg would turn in and I couldn't lift it anymore.  It was pretty scary.  The seizures and auras also increased.  So, the doc ordered an IV infusion of meds to see if that would help stop them.  While the nurse was here doing the IV infusion, my legs gave out again (right as I had placed P in her arms-thank you, Jesus, for protecting my baby girl).  Later that night, we did an infusion of fluids and as it started, I had a very bad seizure.  I woke up an hour later on the couch, not remembering anything that had happened.  Ben sent an e-mail to the doc sharing all that was going on with my legs and the seizures and that we were scared.  This was all too weird.

She called us tonight to discuss what she believes is happening.  It is a new diagnosis.  Looking at anti-GAD antibodies (what is elevated in my body that they believe is the culprit for my seizures) is relatively new.  It was originally found in patients with Type 1 Diabetes or Stiff Person Syndrome.  They are starting to find a few patients with epilepsy that have the antibody.  So, the Mayo Clinic uncovered this as the most plausible cause for my seizures.  The normal range is < .02 and mine was 4415.  Thus, we've been trying to treat the elevated antibodies.  So, I should be getting better, right? 

The doc believes that I have a rare condition called Stiff Person Syndrome (previously Stiff Man Syndrome).  This would explain the extreme rigidity that I've had in my neck and back over the last few weeks and it explains what's been going on with my leg.  So, we have an appt. this Friday to meet with her and discuss treatment options.  There is no cure and so once again, we're praying for a miracle!!!