Neurology and GI visits

Kerissa • May 29, 2015

Hey guys!

On Tuesday, I saw the neurologist at Randall Children’s.  She’s the doctor who went through a year long mitochondrial medicine fellowship up in Seattle.  It was a good appointment, and she’s really nice.  I’m so blessed to now have a doctor who will take care of all my mito issues locally.

I mentioned that I’ve been dealing with worsening myoclonus (muscle jerking)—it can be brainstem related, spinal-cord related, or from the muscles.  It could also be from seizures.  So she went ahead and ordered a standard 30 minute EEG which is scheduled for June 11th.  If it’s normal (it often is because it’s such a short study), she’ll look in to admitting me for a longer EEG at the hospital.

She’s also going to write up an ER protocol letter for whenever I have a “mito crash.”  She’ll explain what type of IV fluids I should receive, what meds to stay away from, etc.  I’m sure the letter will be really helpful for the ER doctors!

Today I saw my GI specialist.  He’s going to decrease the TPN fluid volume/calories again because the amount I’m currently receiving is still too rough on my neurogenic bladder, and I’m now at a good weight.  If I start losing weight again, then he said we’ll have to go back up on the TPN.  We also discussed how I may not be able to get off of it if the stomach/intestinal issues don’t improve..

In one and a half weeks, I have my 3rd sleep study and 1st multiple sleep latency test.  The exhaustion has just been getting worse.

In other news, we leave for San Diego in 23 days!!

October prayer request

By Kerissa Lee • October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️

Thank you! (+ a prayer request)

By Kerissa Lee • October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3

Praises & Prayer Requests

By Kerissa Lee • September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23