Josiah's EEG Update

February 26, 2023

We apologize for our silence after the EEG. It was a lot to process. Still is. Josiah’s results were abnormal, showing 4 Interictal Epileptiform Discharges during his test while sleeping. The neurologist told us it is rare to have 4 events in such a short time, within 30 minutes. She described it as "A seizure is like a house fire, and these charges are the sparks that could ignite it". Josiah didn't experience a seizure during the test, but this pattern tells them he is at risk of having recurring seizures that would look like the one he had a few weeks ago. Basically they’re saying he's pre-epileptic, and before he has another seizure they want us to put him on anti-seizure meds.?

The two options they gave are very serious and both could potentially have really negative side affects, short and long term. They also gave us two emergency doses of a medication that would help revive him if he has a seizure longer than 5 minutes.

We will still follow up with Mayo Clinic Children’s Hospital, as they work only with kids so we want to hear their take on the medication. Unfortunately, even with the referral, they may not be able to see us until sometime in May.

The neurologist here suggested we start either medication within a week and a half. The urgency is the possibility of a seizure while sleeping, which could be life threatening if we aren’t awake and there to intervene. They do understand our hesitation, and because Josiah has had only one seizure would support us if our decision was to “watch and wait”. We have discussed what monitoring devices are available for a toddler, the best is an AI camera/monitor called the SAMi-3. It arrived on Friday, unfortunately there are technical issues with StarLink and our connection speed. We are working on that now.

Please agree with us that epilepsy has no place in Josiah’s body and that regardless of what the EEG showed, he will not have another seizure. Pray also for us to have wisdom and peace from God on what to do regarding medication.

When Josiah was born, I shared on Facebook about the traumatic experience about how close we were to losing him during delivery. Someone private messaged me, “God must have special plans for your son, the enemy tried to take him out in the womb.” I forgot about that message until two days after Josiah’s 3rd birthday when we thought we lost him.

Last week, Rebekah was working on an assignment for a mentorship program she’s involved with. She was to study several Old Testament characters and choose one to write about, describing why their story was significant to her. She shared it with me, and I want to share it with you.?

“I chose to study King Josiah, whose story is very significant to me. When I was 28 years old, I had an encounter with God. There was a situation going on with my dad and I was praying for him. I was reading in 2 Kings about Josiah when suddenly the Lord spoke to me and told me I would have a son named Josiah, and that he would be an altar breaker. I wrote it in my journal that day. Ten years later my Josiah was born, and we almost lost him that day.?

Over the last year, we’ve been on a journey with our son. Without going into details, or putting “labels” on him, I will say that what God spoke to me that day had become overshadowed with consultations, appointments, and evaluations. We’ve worked hard to build a support network around him to help him overcome a variety of developmental obstacles.

Many of you saw my husband’s post about what happened a few weeks ago, when Josiah lost consciousness and stopped breathing. You wrapped us in prayer and intercession and THE LORD ANSWERED. I won’t recap everything here, but now we’re on a new journey, to find out what caused this and if he’s at risk for reoccurring episodes. As I read about King Josiah, the Lord reminded me of the strong calling on my son’s life. He reminded me that no matter what is happening in the natural, my son will be an altar breaker and will walk in the ways of his Heavenly Father!

Josiah became King of Judah when he was 8 years old. 2 Chronicles 34 says he did what was right in the SIGHT OF THE LORD and walked in the ways of his father, David. Josiah’s actual father was Amon, a wicked man. Josiah was not affected by his family’s wickedness. By age 18 he had purged the land of idolatry and broke down every altar and idol in the kingdom. He ground them to dust and scattered them. Psalm 18 is my “Life Book”. In verses 36-43 it says God set David free and helped him overtake his enemies. He also ground them to dust and scattered them.

I’m now declaring MY life verses over my son. God will deliver him and set him free. He will overtake and defeat every label and attack of the enemy. He will fulfill God’s call on his life. He will not conform to the pattern of his generation. My daily prayer since he was born is that he is a worshiper and lover of Jesus. Like King Josiah, I declare that my Josiah has a heart like David, the heart of a worshipper, and he too will be used mightily by God. The name Josiah means “God has healed”. I believe and declare that Josiah is healed, and that he will be used by God to restore and bring healing.”

#OurJourney #FamilyLife