And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Wednesday, June 6, 2012

Somewhat of an Update

A quick update on our girl:

Almost three months ago, we noticed that she had a toe that was swollen.  So, we took her to the doc's office and they did an x-ray to tell us her 4th toe is broken.  Four weeks later, just as swollen.  The great thing is that she didn't seem to be showing any signs of pain. So, the ortho says he can x-ray it.  Everything looks great and healed (under the skin).  On the outside she is just as red & swollen as can, he tells us that we need to go sit in the waiting room at Children's ER all night.  We took her back to our pediatrician that took another look and said stick with getting an appt. because if you go to the ER they will do an x-ray and tell you to come back next week.  However, we are noticing other toes on that same foot starting to swell.  So, we called back today to see if we could get her appt moved up...

As of right now, it's not an option, but they are waiting for cancellations!

Next, I'll start by apologizing for this not making any sense.  I've had to take some medicine this morning that pretty much takes me out of the game.  However, I'm trying to keep fighting through.

First part of the update relates to Mayo.  We spoke with the docs in charge of my case and they are all a bit up in the air.  The neurologist says that the surgical conference determined that I needed immunotherapy because surgery is too risky.  The neuroimmunologist said that we've tried most everything, but there is one more choice.  My doc at home thinks that there is one more surgical option.  So, here's the scoop:
  • There is inflammation in my amygdala which leads them to believe that it is an autoimmune encephalitis causing this...this is the first time this has ever been mentioned, but they say they found it in 2010 & 2012.
  • The surgery they would want to do would be in the temporal lobe, but they are afraid that I would lose too much cognitive function.
  • On the other hand, the docs agree that my seizures do not present as temporal lobe seizures, but more like insular seizures.  Thus, they could be starting in the insula and progressing to the temporal lobe.  So, if we remove part of my temporal lobe, it won't do any good if the problem is in the insula.
  • The neuroimmunoligist is recommending chemotherapy called Rituximab.  Thus, completely kill the immune system (all the B cells?) and see how it wants to "restart."  He says that it's highly likely that it won't work, but he doesn't feel that there is another choice that has any greater projected outcome.
  • We spoke with my neurologist here and she sees that there are a few more avenues.  She agrees with the chemo, but wants to consider trying a few more meds.  She wants to take me off the med I've been on since day one and switch it to an old school drug.  However, we have to find out if we can get our hands on it since it is so old school and swimming in all of the artificial colors that are triggers for my seizures.  
  • Doc is trying to reach out to some colleagues at Jefferson to see if they would consider my case for the surgery.  She said she would even travel with us and go see all her old buddies!!
  • We are trying to get our hands on the videos from the original brain surgery.  They were supposed to be at the Mayo surgical conference, but it doesn't appear that they made it.  These could also be sent to Jefferson to see how willing they are to consider surgery. 

After having 40+ seizures in the past week (one of the worst weeks I've had since being diagnosed), the Lord blessed me with some reprieve and I didn't have any seizures on Sunday and I just had one going to bed on Monday and Tuesday.  However, today I had already had 6 seizures by 11am.  Thus, I've had to take rescue meds.which typically remove me from the world.  They are so tough...

So, hopefully, we'll be back soon, but it's harder to see what I'm writing and to know if I'm really awake..


  1. Hi Meredith,

    We have found a scientist in Boston that has seen the connection of mast cells and seizures. PLEASE before trying any surgery try this therapy!! It is worth it!!!
    Caleb's seizures has gotten so much better with the histamine blockers and now going to be getting on a mast cell stabilizer. He still has a chronic illness and we are dealing with this. The seizures are 98% gone... Last year at this time he was at the worse he has ever been...
    I have lots of info for you to read.... Most medical doctors does not understand the mast cell connection. I have reports from Dr. Theo that connects the seizures to a mast cell disorder. They believe he has MCAD....
    d s sprang @ g mail . com
    take care!

  2. Praying ALWAYS sweet friend. Love and hugs to you ,Ben and Presley!!!