VEEG and Other Happenings

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VEEG

Wednesday morning we took James to the hospital for a routine overnight VEEG (video EEG) to see if his seizures have changed at all. We were originally supposed to do the VEEG in March, but with his GI issues, his seizure patterns were different, and we didn’t think we’d get a good read on the VEEG.

The GI and digestion issues are better, but lately he has been having these crying fits and has been quite irritable. Nobody has been able to figure out what is causing it. The only other things that we can think of is that they are seizure or pain related. There aren’t any tests to determine if he is in pain or where the pain is, but there are ways to test for seizures, like an EEG (electroencephalogram) or VEEG (video electroencephalogram). The nice thing about the VEEG is that it doesn’t just record the electrical activity in the brain, like a standard EEG does. It also records video of the patient so that the doctors and/or technicians can see what the patient is doing at the time of the seizure or if there are any reactions to the seizures.

We almost had to cancel this VEEG because on Tuesday the van had a dead battery. Stacy joked that James sabotaged the van because he didn’t want to do the VEEG. (You will see in a moment why.) Fortunately, we have AAA who came out and jumped it. Stacy’s folks came over to watch James so that Stacy could take the van to Dodge to have it looked at. Two and a half hours later, they determined that it was a faulty battery and replaced it under warranty. Nice try James, but you are going to your VEEG.

Can you tell how excited he was when we got to the hospital on Wednesday morning?

 

James sits in a stroller, wearing a red hoodie and striped shorts with a patterned neck pillow supporting his head. Medical tubing is visible, indicating ongoing care needs. The setting appears to be an indoor hallway with polished floors, giving the moment the feel of a hospital or clinic environment.
It’s too early for this!

 

Once we got him all settled into the room, it was time to get all of the leads put on his head. At least he was surrounded by pretty girls during the process. In addition to the EEG technician, there were three nursing students, one nurse, and two ladies from Child Life that stopped in to see if James needed anything to make his stay more enjoyable. They brought an iPad so that he could watch some videos to keep his mind off of what was being done to his head.

 

Two adults stand beside James lying on a bed covered with a robot‑patterned blanket. One wears a purple coat and the other a white coat with gloves, both focused on the child as they prepare to place EEG leads. James, dressed in a striped shirt and shorts, looks at a tablet that someone is holding in front of him while the adults work, creating a calm, supportive medical‑care moment.
Watching videos on an iPad while they put the EEG leads on his head

 

Once all the leads were attached to his scalp, his head was wrapped in gauze to keep them all in place. Now you know why he was trying to sabotage the van? That has to be uncomfortable.

 

James lies in a hospital bed with gauze wrapped around the head, wearing a navy‑and‑white striped shirt with a turquoise collar. His mouth is open slightly, resting on a pillow decorated with robot designs. Hospital equipment and bedding in the background set the scene clearly in a medical environment, capturing a quiet moment of monitoring.
Head wrapped in gauze to help keep the EEG leads in place

 

Stacy leans over James lying in a hospital bed, giving a gentle kiss on the forehead. James has a gauze wrapped around his head and is wearing a striped shirt. Medical equipment and hospital bedding frame the scene, capturing a quiet moment of comfort and support during a routine VEEG.
Kisses from Mommy

 

They did record lots of seizure activity, and like previous VEEGs, the seizures are happening all over the place and are not in one area. We couldn’t visually tell when he was having most of them. He did have a few crying fits, which we assume was during a larger seizure, or cluster of seizures.

Before they sent us home on Thursday morning, they took some blood to check the levels of medications in his blood before we started Charlotte’s Web CBD oil.

I don’t know what’s worse for James…getting all of the EEG leads put on, getting them taken off, or getting his hair washed after we get home to get all of the glue out of his hair from the EEG leads. There is lots of scrubbing involved, and he lets us know that he does not like it!

 

James lies on a white cloth on a carpeted floor, resting after having the EEG glue washed out of his hair. He wears a dark shirt with white horizontal stripes, and a small circular patch is visible behind the ear. The scene feels quiet and domestic, capturing a moment of rest after the cleanup.
A little bit upset after Mommy scrubbed the EEG glue out of his hair

 

We were eager to start the CBD oil once the VEEG was out of the way but wanted to wait until the weekend to start it, so that we would both be home in case there were any adverse reactions. Yesterday he got his first dose. We won’t know for a while if it will reduce his seizures, but we are really hoping that it does. Fingers crossed!

 

James lies in a cushioned reclining chair wearing a blue shirt with white whale patterns and a white cloth resting on the shoulder. A hand in the foreground holds a syringe while a small bottle and medical tubing sit nearby, capturing the moment of giving the first dose of Charlotte’s Web CBD oil in a calm, home‑care setting.
First dose of Charlotte’s Web CBD oil

 

 

Other Happenings

In addition to the VEEG this week, James also went to see the dentist on Monday and the pulmonologist on Friday. Both of those were just routine checkups and nothing to report there. Both appointments went well. Busy week for James.

On Memorial Day we had some family over lunch. The weather was nice, so James was able to spend some time outside on his swing.

 

James lies face‑down on a porch swing suspended by ropes, resting on the flat surface as it hangs from an outdoor patio structure. The swing sits on a deck attached to a house, with siding, a glass door, and a cardboard box visible behind it. Nearby are a patterned chair, a glass table with a red plastic cup, and a few bags or cloths, giving the scene a relaxed, lived‑in backyard feel.
Relaxing on his swing on Memorial Day

 

And James finished up 1st Grade. He looked so unhappy in the First Day of 1st Grade picture, and almost looks relieved that its over in the Last Day of 1st Grade picture. Overall, he had a good year even though the last few months were a bit rough with the GI issue and high heart rate keeping him home more often than he was in school.

 

A two‑photo collage shows James lying on a pillow for school‑year milestone pictures. The left image, labeled “2015,” shows him holding a sign that reads “FIRST DAY OF 1st Grade!” The right image, labeled “2016,” shows him holding a sign that reads “LAST DAY OF 1st Grade.” The collage has diagonal colorful stripes in the background, with the years displayed in blue text on yellow boxes, creating a bright, celebratory comparison of the beginning and end of first grade.
First Day and Last Day of 1st Grade