August 25, 2022 "First Grade"

 Rayden is very excited to begin first grade. His new teacher is Mrs. Sarah Gutierrez. He will also receive instruction from Mrs. Maegan Peterson again this year. 

August 24, 2022 "EEG Results"

Dr. Lewis reported that Rayden's 24 hour EEG showed abnormal discharges occurring in multiple parts in the central regions of his brain (both sides=generalized seizures). The discharges were very frequent during sleep. They do not completely correspond with the area of the hippocampus, which was smaller (atrophic) on the MRI. After talking with the epileptologist, Dr. Lewis said the abnormal discharges are frequent, but not dangerous. Discharges do not cause damage to the brain, but ongoing seizures do. Since the discharges occur on both sides, the plan is to continue trying to prevent seizures with anti-seizure medication. 

The official report from UNC is difficult to understand but it is as follows: 

TECHNICAL DESCRIPTION:

AWAKE STATE: The dominant posterior rhythm is a medium amplitude 6-7 Hz activity with good reactivity. The background is comprised of predominantly mixed frequency theta, alpha and beta range frequencies.

SLEEP STATE: The patient cycles through sleep, sleep elements are well developed and symmetric

INTERICTAL DISCHARGES: Occasional awake state sharp waves over central (C3, C4) and temporal (T7, T8) head regions.

Discharges greatly increased in sleep, frequent to abundant discharges, right and left central, temporal, and central-temporal. (C3, C4, T7, T8)

 

IMPRESSION:

Abnormal 24 hours ambulatory EEG

-- mild diffuse background slowing

-- frequent sleep potentiated multifocal sharp waves over parasagittal central and temporal head regions (C3, C4, T7, T8)

 

CLINICAL INTERPRETATION

Background activity in this study is indicative of bi-hemispheric dysfunction of non-specific etiology, it may be seen on the basis of toxic, metabolic or primary neuronal dysfunction.

Epileptiform activity seen in this study is consistent with multifocal cortical irritability, and similar to that seen in patients with epilepsy of multifocal mechanism of onset.

When seizures appear to result from abnormal activity in just one area of your brain, they're called focal seizures. Seizures that appear to involve all areas of the brain are called generalized seizures. Six types of generalized seizures exist. 

• Absence seizures. Absence seizures, previously known as petit mal seizures, typically occur in children. They're characterized by staring into space with or without subtle body movements such as eye blinking or lip smacking and only last between 5-10 seconds. These seizures may occur in clusters, happening as often as 100 times per day, and cause a brief loss of awareness.
• Tonic seizures. Tonic seizures cause stiff muscles and may affect consciousness. These seizures usually affect muscles in your back, arms and legs and may cause you to fall to the ground.
• Atonic seizures. Atonic seizures, also known as drop seizures, cause a loss of muscle control. Since this most often affects the legs, it often causes you to suddenly collapse or fall down.
• Clonic seizures. Clonic seizures are associated with repeated or rhythmic, jerking muscle movements. These seizures usually affect the neck, face and arms.
• Myoclonic seizures. Myoclonic seizures usually appear as sudden brief jerks or twitches and usually affect the upper body, arms and legs.
• Tonic-clonic seizures. Tonic-clonic seizures, previously known as grand mal seizures, are the most dramatic type of epileptic seizure. They can cause an abrupt loss of consciousness and body stiffening, twitching and shaking. They sometimes cause loss of bladder control or biting your tongue.

 

August 9-10, 2022 "24 hour EEG"

Rayden's neurologist ordered a 24 hour ambulatory EEG to hopefully capture any abnormal discharges. She will then review the EEG and the recent MRI with one of their pediatric epileptologists to see if they can pinpoint the origin of the seizures. It may take up to a week for the study to be read and then we will meet again. After seeing the MRI report (See April 26, 2022), I honestly don't know how they are going to pinpoint the origin. There are at least 6 out of 8 abnormalities in his brain that can cause seizures! 

Luckily, Rayden is older this time and understands what's going on. Although he talked to the technician the entire time, he laid perfectly still while he measured his head, marked on his scalp with the pencil, placed all 23 electrodes and dried the glue. The electrodes were then covered by a net cap and attached to a special recorder that is slightly larger than a portable cassette player. He placed this recorder inside a disposable back pack so Rayden could walk around and not worry about it. As soon as we got back to the lobby, Rayden reminded me that he was 'good.' This meant he wanted Starbucks caramel like his nurse spoiled him with last year. It has now become a traditional thing for him. 

We were fortunate enough to spend the night at the Ronald McDonald House instead of the hospital. That made the 24 hours a little more bearable for Rayden. He thought it was more of a sleepover with his two grandmas. He was able to walk around outside, visit the playground, enjoy the playroom, and watch a little TV. He was even allowed to get two prizes from the Rack Room (Bop-it, and Sand Art). This kept him busy until dinner. Then he literally was ready for bed at 8:30! Rayden and I tried to sleep on the cot while Nanny and Granny got the beds. Needless to say, we didn't sleep very well. 

Rayden did not have one of his seizures while wearing the EEG. His doctor had already informed me the likelihood of recording a seizure during a routine EEG is small. The neurologist will be looking for spikes or sharp waves, not just seizure activity. I just hope they can gain some information that will help him. 

Removing the EEG wasn't as easy as placing them. The technician had to use acetone that smelled like nail polish remover. The smell was so strong that it made Rayden cough bad and his eyes started burning. When she finally got all the glue out, she rubbed oil all over his scalp and proceeded to give him a mohawk. He thought that was funny!