Neurology Update from May 12-17

I checked back into the Epilepsy Monitoring Unit on Friday, May 12. I was told to sleep deprive myself the night before and not take my Keppra that morning, both to kind of jump start my stay. 

Friday night, I was sleep deprived again (up until 1), then I did strobe lights and hyperventilating (until about 1:30) before going to sleep until about 6:30am. 

Saturday was a long, frustrating day of nothingness. Saturday night, they gave me a medicine to make me sleep and to lower my seizure threshold, but nothing happened.

Sunday was another long day, with sleep deprivation again that night (up until 2am).

Monday night, they gave me a higher dose of the medicine to make me sleep and to lower my seizure threshold and DING DING DING!!! I finally had a seizure!!! I have no recollection of it happening, but the nurse and EEG tech told me about it about 3 hours later. I couldn't believe it--FINALLY.

Tuesday morning when my doctor arrived, I gave him a big high five. He's been just as determined and frustrated by all of this as I have. He confirmed that it was an electrical/epileptic seizure. He told me that they don't know the cause of epilepsy in 80% of cases, but that he could look into an autoimmune connection (since I have IBD and psoriasis) and/or do another MRI to make sure my brain looks good. Beyond that, he really doesn't have other tests to perform (mind boggling to me).

Tuesday day, I had a spinal tap (aka lumbar puncture) done to test for an autoimmune connection. When I got back to my room, I had to have IV fluids to try to curb any side effects from that test. Tuesday night, they gave me Valium to really knock me out, and I slept off and on that night. I had a splitting headache when I sat up Tuesday evening, so the nurse suspected a lumbar puncture headache. She talked to my doctor, and he ordered more fluids, an IV anti-inflammatory medicine, and flat bedrest that night. So from 1-2am, I couldn't sleep because of the IV pump. Besides that, I slept fairly well and my headache was gone on Wednesday morning.

Wednesday morning, I had to go down and get an MRI and wait for those results before being discharged. Along with seeing the MRI results, my doctor let me see the video and EEG of my seizure, which was fascinating to me. It might give me nightmares, but I am really glad I got to see what I look like. As far as the MRI, all looked the same two years ago when all of these issues started. I was released around 11am and headed home to finally take a shower and move around freely without having to have assistance. Hooray.

Then the headache returned, and I felt clammy and nauseous all afternoon/evening. I did make it out to see Beautiful: The Carole King Musical with my mom, but I have a headache again today and need to take a nap right now (b/c Lenore is napping).

I will have to follow-up more often with the neurologist for the next year to make sure the medicine is keeping things under control. He switched me off the Keppra because a) I still had seizures while taking it and b) it was (scarily) messing with my memory and making me feel very foggy.

Fingers crossed that the new medicine will keep things under control. If all goes well, I will be able to drive again August 14, right in time for school to start back for Lewis.

Looking back over the past two years, I think I have had 7 seizures (that we thought were parasomnias or syncopes or other things): 3 in the 6 month period of 2015 when I was still up nursing Lenore in the night, 1 on February 4, 2 on May 3, and 1 on early May 16.

I'm glad to know that they are true epileptic seizures, but I can't believe they (scientists/researchers) don't know the cause in so many cases. There are things that can trigger seizures and lower seizure thresholds, so I guess I can do my best to follow the guidelines. But it's pretty harrowing to think that there's so much unknown.

To be continued...

Neurology Update from May 8

I was greeted by my neurologist on Monday with a loud 'What is WRONG with you?!' I appreciate his humor in all of this, I really do. He said he kept me in the EMU last month to be certain of his diagnosis, and he felt sure of it. My EEG was 'pristine,' according to him. He said that he likes to be right, and that he is usually right. He felt like it was looking like neurocardiogenic syncope (fainting) instead of epilepsy. He had referred me to the cardiologist, who I saw last week--he told me to stay hydrated and sent me on my way.

My neurologist was really, really surprised to hear that I had more episodes. He said that standing up in the bathroom is probably the most common way he has heard of people having syncope episodes, so he would have passed that off as a blood pressure/blood flow issue. But then, the fact that I had another one in the ER, a few hours later, just sitting in a hospital bed, is what is driving him the most crazy.

Through the neurology appointment on Monday, I mentioned (again) that I do have IBD (ulcerative colitis) and psoriasis, and he asked how long I've had those symptoms. Psoriasis was at its worst right before Lewis was born because I remember having laser treatment on my feet (and being super pregnant). The IBD started right after Lewis was born and was worsening and worsening until just last fall when I started a new medicine (Entyvio). That medicine has been checked out and is not found to cause seizures, but I think my doctor is thinking that there could an an autoimmune connection to my seizure issues.

I am heading back to the EMU on Friday. I'm supposed to sleep deprive myself beforehand and skip my morning dose of medicine to get things moving along. I'm not sure if he's planning to try to trigger a seizure or not--he said he has all of the data from before to work with, so he has more specific objectives in mind. I could stay one night or a longer stay--he couldn't say.

He is going to do:

• another MRI (it's been 2 years since my last)
• a spinal tap (to test for an autoimmune connection)
• possibly a tilt test (to check my blood pressure situation)

And I have to take blood thinners since I developed the blood clots last time. I feel like it will be easier in some ways because I know what to expect, but harder in some ways for the same reasons. Being attached to all those wires is the worst part, but hopefully he can figure some things out and get me going on the right path. As of now, August 1 is my date for driving. If I do have a seizure in the hospital, we start counting all over again (90 days).

I'm feeling lightheaded and having trouble remembering things, which could be from the increase in medicine. Or just my brain calming down and recovering. 

Lenore at 2 1/2 Years

I think that they (doctors/insurance companies) must have added a well-child check at 2 1/2 years since Lewis came through that age. I feel like we went at 2 and at 3 with him, but 2 1/2 feels a bit odd. Anyway, Lenore went on Monday, and everything checked out well.

Her stats:
Height: 37.5 inches [91st percentile]
Weight: 33 pounds 3.2 ounces [89th percentile]
Head Size: 51 centimeters [98th percentile]

I feel like she's caught up/surpassed her normal growth curve. I think she was more 'average' before and now she's a little more 'above average.' She didn't have to have any shots or finger pricks, so it was a pretty basic appointment. I DID finally switch offices (still within the same hospital system, but to one more conveniently located to us and hopefully more efficiently run). The doctor was very friendly and took a lot of time with us (AND WAS ON TIME, which is a huge improvement).

What she's doing:

• Still napping. #praisejesushallelujah When she doesn't, there's hell to pay for days and days after. She typically sleeps 3 hours in the afternoon, and close to 12 hours at night. She is still in her crib, but I have started thinking about when we will transition her to a twin bed. Maybe once school is out, we will put a bed in her room and let her live with it--I feel like it's going to be a lot easier with her (vs. Lewis), but I feel like it needs to be her idea.
• If you'll recall, we had no choice with Lewis because he was climbing out of his crib at 18 months and was a danger to himself. We were forced to find a way to keep him in his bed (and naps suffered and it was a very dark period of time). I think Lenore's personality is such that she will decide to when she decides to and she won't look back.
• On a related note, potty training is going to go similarly. She decides/announces that she needs to pee occasionally, and she will go and clap and wipe and flush and all is well. It's not happening consistently for her, though, and she doesn't seem to be in any hurry.
• She has so much attitude. We joke that she's a strong, independent woman, which she is, but MAN. When she has put her mind to something being a certain way, there can be times when nothing we can do or say will sway her from getting it her way. It can be so challenging.
• She has been out of preschool since March 17 (when I quit working and pulled her). She is all set to start at a new school near our house this fall, 3 mornings a week. I'm really excited for her/us to have a fresh start, with 3 years of preschool still ahead of her, because of the way her birthday falls (October 29).
• She had tubes put in last month (finally), and we go back to have them checked tomorrow. I'm sure everything will be fine with that--she seems unphased.
• She says really funny things these days. She says 'about everybody else' in the improper context, so it cracks me up now that I recognize her doing it. 
• Example: She took a magnet off the fridge at lunch today and said, 'What is this about everybody else?'
• I think she just meant, 'What is this?'
• It was a superhero-shaped bottle opener magnet, so I think she was trying to ask who he was/what character/etc. If you spend time with her, listen for her to insert 'about everybody else' from time to time.
• She loves to walk on her own, ride her bike on her own, look for rocks on her own, etc. She really no longer allows me to take stroller walks with her. Or we will walk to a destination (i.e. the lake to look at geese), and then screams THE ENTIRE WAY HOME about how she wants to walk. I can put her in the bike trailer to get where I need to go, but, even then, she sometimes screams when I try to get her back in to go home. It really sucks not being able to drive places. It sucks having to rely on walking or riding my bike everywhere...with a screaming toddler. Any chance I can get to have some peace and quiet, I need to take it. I do get up to walk with a neighbor two mornings a week, and that is nice. But as far as being productive and getting errands run, that quiet/alone time is something I have missed and will miss until August (or beyond) rolls around.

Sorry to stray. I'll post a health update, as well. I met with my neurologist on Monday, as well, and he seems to have some theories.

Well, This Week Sucks

Monday of this week, I finally met with the cardiologist, referred by my neurologist. He looked at my test results from my time in the EMU (the Holter monitor and Echo), and he said that everything looks great/normal/not alarming. His theory was that I was up and down, running around (which I was, for 36 hours leading up to February 4th), dehydrated, and that I passed out. Simple as that, he didn't see anything wrong with me and sent me on my way. Cleared by him and the neurologist a few weeks earlier, I decided to go ahead and let myself drive a few days before I'd planned. I drove home from the cardiologist, then to run errands at like 7 different places (sweet freedom). After getting Lewis from the bus stop, I went over to pick-up Lenore from the in-laws and back home. Tuesday, I drove to the zoo (with a neighbor) to chaperone the Kindergarten class trip. Tuesday night, we had dinner with the neighbors, and I very clearly remember basking in my new freedom, once again. Summer time. Freedom. Fun.

Then Wednesday happened.

I woke up at my normal time, went downstairs, made coffee, and sat with Lewis and talked of our plan for the evening (he wanted to go down to see the Belle of Louisville race in the Great Steamboat Race, part of the Kentucky Derby Festival activities this week). I had my two cups of coffee while waiting for Kevin to get ready for the day, then he and I switched places. As I sat down to use the restroom, I realized there was no toilet paper, so I yelled at Kevin to bring me some. The next thing I remember, I was on the floor, with Kevin telling me I had another episode. I seem to have stood up and went head first into the tub (based on the bruises on my ear and side of my head). Kevin moved me to the ground, put me on my side, and put a pillow under my head.

He called my doctor, I believe, and they said to bring me on in. While I was in the ER, I had another episode in front of the nurses and nurse practitioner. I don't remember any of it, just feeling verrrrrry tired afterwards. They've kept me on the same medicine for now, just a higher dose (750mg 2x/day instead of 500mg). I have pretty spotty memories from Wednesday--who I talked to, what was said, etc.

I already had a follow-up appointment on the calendar with my neurologist on Monday, so I'm really anxious to hear what he has to say. His supposed 'gold standard' of testing showed nothing, so I'm wondering what other tests are out there. There is a tilt test that the cardiologist mentioned (as did the neurologist when he was hypothesizing that it could be heart-related), which involves tilting me different ways to see what happens to my blood pressure.

All I know is, I can't drive until August 1, which feels like the entire summer. Just when I was getting my freedom back (day 88 of 90). It's hard not to be bummed about it, but I guess we'll do what we do and make the most of it. We will continue to walk and ride our bikes and go for hikes in the woods. Lewis's school is just over a mile from our house, so we'll probably be there a lot this summer. It's just such a bummer. :(