A Long Road

(UPDATE- For more current posts, please click on Weston’s name at the top of the screen) 

I never thought I would ever have cause or need to start another one of these. But I guess here we go again... 

Before I get into where we are and what’s going on currently, I’d like to start with some history. On December 8, 2020, our son Weston started having seizures. Initially, he started with myoclonic seizures, often referred to as drop seizures. Usually from standing position, Weston’s body would go completely limp and he would fall to the ground. Hence the term drop seizures. During these initial seizures, he did not loose consciousness. 

Recognizing immediately that something wasn’t right, we took Weston to Carson Tahoe’s ER. They approached his case as just his having balance issues, did a CT scan to confirm he didn’t have any sort of residual head injuries from his falling, and send us on our way. A neurologist in Reno we had seen years past was called for a consult while we were in the ER, but he refused to consult on our case. 

Over the next several days, the seizures progressed and we started to see some tonic seizures (shaking) and tonic-clonic seizures (shaking with momentary loss of consciousness), as well as absent seizures (staring episodes with no awareness of what’s going on around him). Our primary care physician tried to get us in to see a second neurologist, but the second doctor refused our case as well. He said it was likely a muscular issue and we needed to see a specialist in genetics due to Weston’s chromosomal disorder. 

Shortly after this, we did have an appointment with a geneticist at UC Davis. Although they were very compassionate about our situation, they stated it was a neurological issue. We needed a neurologist.  

After our second neuro denial, we ended up in Renown’s ER but were then turned away. They refused to call a consult and again told us we needed to go to someone more specialized. I was told the seizures would not hurt my son and I needed to get over the emotion of it and work on getting to see a specialist in California. 

Through Christmas, Weston’s seizures came and go, some days being better than others. New Years Eve morning though, he woke up having repeated tonic-clonic seizures. They went on for over an hour and a half. And over the next couple days, they got progressively worse until Sunday night at about midnight he had a prolonged tonic-clonic seizure (grand mal) and Weston stopped breathing. We called 911 and were taken my ambulance to Carson Tahoe and then transferred and admitted to Renown. 

At Renown, Weston was hooked up to an EEG for about an hour to monitor his brain wave activity. The test showed bilateral (both sides of the brain) abnormalities with suspected epilepsy type misfirings at the front of his brain. But a full seizure episode was not captured during the test. We also had an MRI to confirm if there was a specific cause. If he had a tumor or was having fluid build up in his brain, we would be looking at surgery. Thankfully, no physical cause was found though; MRI was clear. So diagnosis given was epilepsy. 

At Renown, we stared a low dose seizure medication and finally were accepted as a patient at the only other pediatric neurologist in our area. Under her direction, we steadily increased Weston’s seizure medication as his seizures continued to worsen day by day.

Jumping forward a few weeks then, this past Thursday, we had two more grand mal seizures, and another one on Saturday. Thankfully Weston didn’t stop breathing this time, but they were terrifying none the less. Since then, we have been in a constant state of seizures. Every two to five to ten minutes, he was having some sort of myoclonic, absent, tonic, or petite tonic-clonic seizure. We traveled to Sacramento on late Tuesday for a Wednesday appointment at Shriner’s (he is being fitted for orthotics, a type of leg/ankle brace, to help improve his balance and overall walking) and the episodes continued to get worse. So when we woke up in a still constant state of seizures on Thursday, we decided to drive straight to Stanford. They have one of the only neuro genetics program. 

Upon entry into Stanford’s Pediatric ER, Weston had another notable myoclonic seizure and we were rushed right in. He was given a loading dose of his same seizure medication and given an anti-convulsant to stop the ongoing episodes. After reviewing his history and going through significant struggles just to get him into a managed state, we were admitted to Standford’s pediatric ICU (PICU). 

(In the ER) 

Once in the PICU, Weston was hooked up to an EEG monitor to again look at his brave wave activity. But this time, the monitors are staying on for at least 24 hours. Our seizure medication dose has been almost tripled, another seizure med has been added, and he is on two different anti-nausea meds (the jump in dosing and added meds have not been so friendly to us). We spent the night then under intensive care watch. 

(Hooked up to the EEG)

Through each step, we have had countless nurses, doctors, and specialists here to help us. And as a teaching hospital, each doctor usually then has a resident and a student or two with them. So we have so many people working together to ensure everything is being looked at and appropriately addressed. And we have been told numerous times how grateful they are that we came here. It’s been such a relief being here. 

This morning, we had a meeting with Weston’s neuro team (Team!! A whole neurological team who actually wants to work with us now!) to discuss what they are seeing on the EEG. Looking at the activity waves, there are three different types of activity waves they are seeing. First, there is the normal baseline activity. What is considered normal when looking at most average EEG scans. Small rises and dips along a rather straight-ish line. We have very little of this coming through. 

Second, there are the notable seizure activity bursts. These look like major mountains on the activity lines and are characterized then by the shaking, staring, etc we’ve been seeing in his seizures. 

And then third, we are seeing a lot of what is being referred to as background noise. In between the mild fluctuations of normal activity and the major bursts of seizure activity, Weston has abnormal peaks and valleys in his activity lines that the Neurologists can’t explain. And they occur every few seconds at least. Almost more so then we see normal activity waves. They explained these as his brain trying to process information but doing so in such a jumbled way. Mixed up communication receptors and processors. Initially, if the added medications were to have broken some of these abnormal patterns up, they said it’s likely they could have been mini-like seizures. But they have not changed since the increasing and adding more medications. So background noise is all we know. 

(Images from the EEG- the smaller squiggle dips are considered more normal. The more notable peaks and valleys are the abnormal waves, or background noise. We are seeing more noise then normal activity.) 

What does that then mean? Well, for starters, the medication will only address his seizures. There is not enough advancement in Neuroscience to even know what the background noise is or how to address it. And even in treating seizures, we have been told we have a long road still ahead of us. Long and challenging. We may continue to see the seizures and with how bad these are, the neurologist is not optimistic Weston will ever grow out of these. 

Second, we have been told there is a likelihood we may never have our normal Weston back. That this background noise will likely alter much of his day to day processing and interactions. And the Neurologist said this is one of the worst cases he has ever seen like this. The seriousness of his situation/condition was greatly emphasized. And the neurologist did say, based on his clinical experience, he doesn’t expect Weston will ever grow out of this. 

Now I did ask if they had been able to compare his initial EEG scan from Renown to what they are seeing currently. I was wondering if perhaps this is “normal” for him (minus the seizures). Although they haven’t seen the full images, the report doesn’t give any indications of anything abnormal from before. So not sure then if this abnormal activity is related to the seizures, caused by them, or just another level of cognitive development for him that we’ve now hit. Kind of like the seizures. One day, no seizures whatsoever. Next day, everything changed. 

(Hanging out, still on the EEG monitors) 

We were transferred out of the PICU today and moved to the normal pediatric wing. And it looks like we will be here through the weekend, and maybe into next week. We will continue on the EEG monitor through the rest of today, if not longer. Medications and dosages will continue to be adjusted, monitored, and possibly more added. We’ll have daily follow ups from pediatrics and neuro, and are scheduled to also see a geneticist. Once we get a handle on initial levels and have a better level of alertness, we may then be able to be discharged. After discharge, we have already opted to stay with the neuro team here, even after discharge. So either via remote services or regular trips down here, we will continue to be managed by Stanford’s team here. 

 

So all in all, we are grateful to finally be somewhere where we have support and the right teams looking after Weston. I’m optimistic we will get a better handle on these seizures. But ultimately, I am praying for miracles. I’m praying that we will have our Weston back to normal, despite what the doctors may say. And even with all these meds now on board. I’m praying for God’s hand to be upon our doctors, guiding them in the best decisions to be made. And that through this, God’s glory would be made known. Whatever that may look like, however He may chose. Be it in His sustaining us through what feels like the impossible and our then ever increasing testimony, or maybe in His miraculously removing the seizures all together. But whatever these next days, weeks, months, years may look like from here, I trust and know God has a bigger purpose for Weston beyond what I can even imagine. He’s got this; He’s got Weston. 

Thank you for those of you standing in prayer and faith along side us. And for those of you helping to fight and advocate alongside us for what Weston needs. I will do my best to update everyone with any new developments as I can.

-Julie 

(UPDATE- For more current posts, please click on Weston’s name at the top of the screen)