At the beginning of April, Landin had another EEG to monitor how many seizures he has while sleeping. This particular EEG lasted about 5 hours because they wanted to track a longer period of sleep since that is when he has most of his seizures. For Kyle and I, this EEG was going to let us know if Landin's ketogenic diet was working.
We had to wake Landin up at midnight and keep him awake until his test at 8am. We made it fun and I surprised him with a few new summer things! He loved his new sunglasses and flip flops!
The hardest part about the sleep deprived EEGs is the ride to the Children's hospital. Landin just wants to fall asleep in the car so thankfully Kyle was able to drive while I kept Landin busy in the back of the car.
Exhausted but we made it there! It takes about 30-45 minutes of him sitting still to put on all the sensors.
You can tell he is so tired :(
The Specialist was awesome and was trying to make him smile in this picture lol
'Mom, can I just go to sleep now?'
He fell asleep before she could start her equipment. Which is good and bad but totally designed by God to be that way. Last EEG that Landin had, he had his seizures right at the beginning of the test as he was falling asleep. SOOOO, since we were unable to get that part, we truly don't know how his brain was doing this time around BUT throughout his sleep and waking and other tests, his EEG was NORMAL!!! This gave us great encouragement that the diet is helping! One thing that Landin stilled showed was a lack of REM sleep...which is characteristic of epilepsy. Less REM produces more seizures and more seizures produces less REM sleep and so it continues down a spiral.
Doing the flashing light test and hyperventilating...these are both things that can trigger a seizure. He did great with all of the testing.
Being silly and feeling much better after a little rest.
After the testing, we had to get Landin back to sleep to try to record him going back into sleep. It took a while but he managed to fall back asleep for just a few minutes.
A few girls made neurology patients gifts bags with coloring books and toys inside! Landin LOVED it!
We are thankful for a normal EEG, we will continue the no dairy, no gluten, no sugar, low carb, high fat diet for the next two years and then see how he responds to bring back in a little more carbs. He does occasionall get to have a little cheese and gluten seems to sneak in rarely but I feel like we have found a good balance and try our best to eliminate all those things so that he remains in ketosis. We will also continue follow-ups with our neurologist every 6 months, a dietitian and the naturalpathic doctor. He has been adjusting really well. He had one long absence seizure in May but has not had any more grand mals that we know of since February!
Comments
Post a Comment