“Thank You for Chicken nuggets!”Tags: dacrystic seizures, hypothalamic hamartoma, Living with Hypothalamic Hamartoma, medication changes, rage seizures
While we continue to go up on Landon’s new seizure medication, at week 7, we still don't see much of a decrease in seizures and see more negative changes then good. I continue to pray as more time passes that this medication will be the one we've been looking for to help his quality of life. It scares me though--what if this medication doesn't work, where do we go from here? After a not so good week of dacrystics/rage, unpredictable attacks, and strange physical appearances and behaviors, I continue to question myself about this medication. My mommy emotions have been on a complete roller coaster this past month and a half. The fact of my 7 year old sweet boy being in a happy moment, then he gets the droopy right side face with a crooked smile and crocodile tears, then he starts swinging and starts punching me or whatever is in his line of fire, with the lost look and fear in his eye. What can I do? I know the thing I beat myself up over is wondering what other way we have to control these attacks that take over them?!?!?When one moment your child seems ok and then boom he's on another planet frightened trying to get home to you! How much of this do they remember when it's over? Do they remember hitting you??? These attacks some say is behavior??? Really don’t understand why during these episodes he reaches moments where he loses what little of speech he has and he struggles and struggles to even get the words out, simple words like HOT. He sounds as if he is from another planet pronouncing gibberish/jargon. But when I am feeling down and I feel I've reached a breaking point, Landon never ceases to amaze me and he and his sweet little face lifts me back up. So I really have to share this, He has really become a big fan of prayers. As he sits down for his snack he plops both feet up in the table and says with a big, big smile on his face, “Thank you for this dayyyy, thank you for chicken nuggets!!! AMEN!!!”(not even eating Chicken nuggets but apples) That's right buddy, the little things in life we forget to thank God for, even chicken nuggets! 😉 lol I love this boy!!!! Now hearing him speak so clearly refocuses me and again his sweet little face and sweet innocent love for life amazes me and helps me get to tomorrow with not only a happy heart but a heart full of HOPE and that I again am ready to BEAT this battle we live, living with HH!