Update from Philly

Hopefully all of the posts with pics will keep this from being so boring.

It's an update post for those of you that are so sweet to keep asking how things are going and what we learned in Philly.

I am experiencing one of the worst months ever.  I have had more seizures in the last twelve days than I have had in entire months.  I have taken a rescue med seven of those twelve days (this is a much stronger med that can't be taken as daily therapy due to severe side effects).  The doc also gave me a very strong immune-suppressent IV over the weekend hoping that would help.

My amazing home health nurse is super busy and hasn't been able to come do any of my treatments recently.  So, her Mom was covering for her.  However, her Mom has a new job.  This weekend the home health company sent out their "best" nurse to start the IV that the doc ordered.  You can't see it very well in the pics, but she bruised me up pretty well and yet couldn't get a line started...after three tries!!!

I've got bruises in both arms from her trying in all of the places that I told her didn't work well.  Then, Mom ran into a friend of mine from high school at 7-11 that evening.  She had seen my post on fb asking if anyone had experience with starting this type of IV.  Turns out she was on the IV Team at a big local hospital.  So, she came over and got it in one stick and didn't leave a mark, no bruise at all.  I am so grateful for her sweet heart and willingness to come over.  She brought her daughter with her and Miss P just loved having a friend to play with while Mommy got her IV started.


With the exception of one month when we were starting the IVIG in 2011, the average number of seizures I'm having per day hasn't been this bad since I was diagnosed and we were trying to get the right meds, dose, etc.  They were starting to increase in November of this year, but they still weren't this frequent.

I've also been battling a severe migraine for five days.  Today was the first day that wasn't so awful.  The doc wanted to call in a Hydrocodone earlier in the week because it was so awful, but I'm allergic.  So, we just endured.

Once we returned from the hospital in Philly, the lead doc there called us to give us his opinion after reviewing everything (i.e., my files from the brain surgery, all the scans/tests they ordered while in Philly,  the EEGs from while we were there, etc.).

What did we know vs. what did they find?

• We knew my seizures were on both sides of my brain.  Thus, making surgery too dangerous of an option in 2008.  However, the seizure medicine seems to control the ones on the right side.  So, the theory was that they might be able to do surgery on the Left side if I stay on meds forever to control the Right side.

• They found that all my seizures while in the hospital were presenting in the Left temporal lobe, but the records they received from the brain surgery made it very clear that they are occuring on both sides of my brain, if I'm not on meds.

• We knew that the docs were leaning in the direction that my seizures are autoimmune related.  However, each time we've tried to treat them as such, the seizures get worse and I have terrible side effects from the treatment.

• They found that they probably are autoimmune in nature, but don't have any other treatment options except for what I've tried in the past.  So, they want to retry the IVIG therapy for six months.  The doc in Philly said that he's had some patients that don't respond until month #6.  Thus, he wants to try.

• We knew that surgery was a dangerous option, but we have exhausted every other option.

• They found that surgery might be more dangerous than we thought since my Left side is my dominant side.  As well, just because the seizures are presenting in the temporal lobe doesn't mean that's where they are starting.  T  They could be much deeper.  So, they would implant depth electrodes before doing surgery to find where they are really starting.  Thus, the doc was pretty convinced that he wants to try the six months of IVIG therapy before saying yes to surgery.  The doc said that if my MRI or PET Scan come back abnormal, they would immediately do surgery.

• We knew that my MRIs and PET Scans were all coming back normal.

• They found that my PET scan didn't show any abnormalities, "but it's not good vs. the average patient."  They believe this is because my EEG is so "hot." We understand that to mean too many seizures.

• We knew that there were a lot of times throughout the day when I just felt yucky, but didn't actually record that I had a seizure.

• They found that I'm actually having more seizures than I record.  He implied that I'm seizing quite frequently throughout the day.  So, all of those "yucky" moments are probably all seizures according to him.

So, the doc wants to try aggressive immuno-therapy for the next six months.  Somewhere in there he wants to do another PET Scan and more 24 hr ambulatory EEGs (at home, in a normal environment, not in the hospital).  If I have no response to the IVIG then they will do surgery after six months.  We did IVIG for 6 weeks (May-June 2011) and the seizures got much worse and I had terrible side effects.  So, we stopped it.  Then, we tried again in November 2011 and the side effects were just as yucky with no improvement in the seizures.  Thus, I'm a tad concerned about restarting the treatment.  The doc at Mayo described the side effects I was having as basically getting meningitis or encephalitis after each treatment.

We meet with my local Neuro on Friday to see what the game plan will be since she has spoken with the lead physician at Jefferson in Philly.

Trust in the Lord with all your heart
    and lean not on your own understanding; 
 in all your ways submit to him,
    and he will make your paths straight.
^{Proverbs 3:5-6}