Sleep study / neuro update

In early August Will had a sleep study done. It seems like we do these as needed so with the brain bug and other minor concerns on his sleep we wanted to see where we're at.

Historically Will has difficulties sleeping through the night, partially our fault for letting him sleep in our bed, but he also sweats (I mean like he is drenched), talks and moves a lot. Some anecdotal research that using oxygen at night helps mito kids recover and function better the following day. Here is the back story on Will using O2 at night... 

It's kind of a chicken and egg thing with the O2 for Will. His sleep is pretty bad with - frequent waking and being scared - while wearing the nasal cannula and pulse ox sensor. So we can't really tell if it ever helps. 

Getting all hooked up for the sleep study. Thankfully, American Ninja Warrior was on TV that night, so it provided a good distraction. 

All those wires are attached to electrodes on his head.

Not happy, but perhaps too tired to do anything about it. All night long he liked sleeping with his hand on top of my head, occasionally pulling very hard on  playing with my hair. 

Fast forward a week or so, I got a call with the results from this recent sleep study. She said "abnormal EEG" and then kept on talking. I said, wait, please go back... Abnormal EEG?? This is the first time this has happened. FYI, an EEG is what measures your brain activity and determines if you're having seizures or other abnormal brain activity.

In order to get all the results, you schedule an appointment. So I did. Then after spending a few hours researching and panicking inside my head, I emailed the neurologist for some realistic input. 

(Side bar, a pulmnaologist has to order and interpret the sleep study - so you have to go to an appointment to get the results from the study. But she can't really do anything about an abnormal EEG because neurology isn't her specialty so you have to then get an appointment with neurology to figure out next steps.) 

Thankfully, our neurologist is logical and because of the way the UT Mito clinic is set up, she can access all the results and was able to do some of this via email without making an appointment! It's the little things that really make my day. 

So... the neurologist emailed me back and said: 

It demonstrated some concerns for ‘epileptic activity’.  This is DIFFERENT from saying there were seizures. This just means that there was a ‘potential’ for seizures.  To be absolutely clear:  there were NO seizures seen on the EEG. 

HOWEVER, I would not be terribly surprised to see ‘epileptic activity’ in Will as he has Leigh syndrome and this is a common finding in Leigh syndrome.  Even with the ‘epileptic activity’, true seizures are not common in Leigh syndrome.

She then went on to recommend doing a 23 hour video EEG. This means we'll arrive at the luxurious hospital accommodations for an overnight "23 hour" stay where Will is going to have to wear a whole head, full of electrodes. 

Suffice to say, Neil and I were relieved to know that there were no seizures at this time. The 23 hour EEG is scheduled for the first weekend in October. Actually, Will's school is closed that Friday, so I figured that would be the easiest time to do it and it will give his body a chance to adjust to school so that we get the most accurate "normal Will" data.

The results appointment was last Friday. I really like the pulmanologist, Dr. Jon. She's calm and goes over everything. She said the abnormal EEG was primarily in the frontal lobe of the brain.

1. The frontal lobe is one of the four major divisions of the cerebral cortex. This part of the brain regulates decision making, problem solving,control of purposeful behaviors, consciousness, and emotions. The primary motor cortex is part of the frontal lobe and is responsible for regulating voluntary movements.

Will isn't having any different problems with these types of functions so I guess in some aspect that makes us relieved too. 

Additionally, other previous sleep studies have shown an higher than normal sleeping heart rate as well as lower than preferred oxygen levels. Both of those items had somewhat stabilized; so to answer our chicken and egg problem with using oxygen at night... we're going to keep it in the house and use as needed. 

We had a quick discussion on the fact that it would be good for Will to get more comfortable with wearing a nasal cannula simply because it will help him in the long run. She also suggested trying the oxygen during the day when he seems winded or more tired than usual to see if it will help his body do less work to get back to baseline. All good points and things we'll work into his life. 

While we were at Dr. Jon's she went ahead and did a lung function test as well. Based on his peer group (age, weight, height) the goal number would be 80%. Will came in at 77%. So just below the goal, which isn't troubling to anyone. 

I guess to sum it up, some new, but not urgent, unknown stuff which will reveal itself in time.