I wonder, as I wander!!

Sorry we haven't updated. Yesterday was a rough day for me. Thursday was a fun day, though. Our friend, Dr. S, came by and spent some good time with us. Then, A came and brought her sweet kiddos.


Here is a pic of all of us. That's Mom hiding in the back there.

A's oldest has become quite the photographer and likes taking pics with my camera each time we see her.

Here is a pic of her sister, S.


This is Mom and baby J.

So, it was wonderful to have sweet visitors. Sadly, A's kids have become used to me having seizures and aren't the least bit scared of them. I had one as they were about to leave. The doc and all of his students were out at the nurses' station and came running in the room to capture it. The oldest was snuggling in the bed with me and she carefully crawled out of the bed and got in the stroller. S, the middle one, got in her stroller and J was already attached to Momma. They all sweetly left so the doc could do what he needed to do...

Then, Dr. S, came back later that night and brought dinner for us. Mom and I had fun catching up with her and she is such an encouragement. I had a seizure while she was here and so she got to do a neuro exam. She said my seizures are very unique in their presentation. I had twelve seizures on Thursday.

Friday was not as fun as I was in testing all day. First, I went back to the MEG to try to capture a seizure. I had one within a few minutes of being in the machine, but he didn't have the machine recording yet. So, they missed it. I laid there another five hours and didn't have one at all. Mom worked to do all the things that have previously triggered seizures. Not a thing. So, they called it a day.

I was supposed to have an Inter-Ictal SPECT that morning, but we found out that you have to be seizure free for six hours before they can do it. It is very rare for me to go six hours without a seizure. So, they were going to cancel the scan. However, I was at about the five hour mark when I left the MEG. So, they decided to send me back down for the SPECT. She gave me the isotope injection and I had a seizure exactly ten minutes later. They say it takes at least ten minutes for it to be absorbed and so the scan might not have worked. After that, I had many more seizures to make the total for the day, NINE.

Dr. K came in later in the day and said that he believes I have one of the most unique presentations he's ever seen and they really aren't sure what is going on with me, but they are concerned because it is "very severe epilepsy." He said that he wants to hold out on surgery because when they went back to review everything, they found that the seizures are occurring on the right and left. We have been told all along that they are only in the left hemisphere. They will typically only attempt surgery if it is on one side of the brain because the other side can make up for the part you've just removed. Thus, surgery becomes very risky in my case and needs to be placed on hold. I didn't want brain surgery. However, it was the first bit of hope that we've felt that these could go away.

They presented my case at the Neuro conference and they all came to the conclusion that we need to rule out Hashimoto's Encephalopathy (say that fast three times-I have yet to be able to say it once without stuttering). Hashimoto's is the thyroid condition I was diagnosed with in 2004. It is an autoimmune (my body attacks itself) condition that attacks the thyroid. Encephalopathy is basically disease of the brain. Here are some links with a little bit of info on Hashimoto's Encephalopathy & Mayo info. Basically, they are saying I could have antibodies that are attacking the neurons in my brain, thus triggering seizures. From what I've read, it appears that there are very few cases diagnosed in the world. One study stated that there are only about thirty reported cases in the world.

The treatment is steroids. Yuck. After finally losing the weight I had gained when I got sick, I don't want it back...yes, I obviously want the seizures gone and my life back. I just don't want to trade it in for different side effects and continuing to feel yucky all the time. They said the dose they are using is very low and it's only for three days. Therefore, I shouldn't experience any real side effects other than possible insomnia and "being mean" when they take me off of it. So, I will apologize now incase I'm mean this next week.

If, after three days of treatments, I do respond to this treatment, they will progress down that route. I asked what the treatment would be and Dr. K didn't want to go there. He said, "we'll cross that bridge when we come to it." From the nurses and others around here, it sounds like the treatment would be low dose steroids and IV IgG injections. Can I say, "I'm ready to feel normal again and get back to normal life." I have had five seizures since starting the meds. So, we'll see.

Yesterday ended with quite a few tears. I just want healing and to feel better. I need to be positive that we are at least thinking "outside of the box." I just want hope that we are on the right path.

We did finally get an endocrine consult and Mom & I were impressed with the Endo team. They are going to run some tests, but want to wait until Monday after we've done the steroid trial.

My sweet friend, Dr. S, was a precious encouragement to me yesterday. She reminded me that Paul had a thorn in his flesh and God's grace is sufficient.

9But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:9-10

I can't say that I'm where Paul was, ready to boast about my weakness and delight in my hardships or persecutions, but I have encouragement through God's Word that it can be done. So, I will try to hold to His precious Word, though I am so weak in my flesh right now. I can hardly see through the tears to write this as I want it over....to just end. Please, Lord, healing!!

Finally, Dr. K stopped back by today, Saturday, to check in and said that he truly believes my case is one of the most rare he's seen and he's not willing to plan for the future. He just wants to try one thing at a time. We are very impressed with him and his willingness to think outside of the box and look for things no one else has considered.


This is a pic of us today when he stopped by to visit.

They did allow me to go on a walk which was nice. Mom & I wandered through the halls of the hospital. It was just nice to get out of the room and see daylight and breath fresh air.

So, as I say in many posts, if you are still reading (since I tend to type/talk way too much), thank you so much for your love, prayers, and devotion to walking this road with us. I can't do it alone and need my brothers and sisters in the Lord to help us carry this burden as I am so confused right now.