Tuba is not doing well. His seizures have escalated. He's having (or we are seeing) about 5-10 a day. The worst part is what they do to his personality. He is crabby, cranky, moody, fussy, and just downright mean. He has been having trouble at school melting down. He screams, hits, tries to bite and is scaring the other kids. NOT GOOD. Cam and I are so sad and frustrated. We have been down this road before and don't want to do it again. We will be going back into the neurologist's office soon but I doubt they will have any solutions. The VNS should start working for him again and the med increase too but....when? I'm so sad. It brings up extra fears that I push down and forget about when he is having good seizure control. Pray for Tuba and for his Mama and Papa.
Oh sweeties, I am so sorry. When his seizures are controlled he is THE BEST KID you could imagine. When they aren't, it's scary and maddening and awful. I know you are excellent parents of all your children. I pray this bump in the road is just that. A bump. And that Tuba's VNS will begin to do, once again, it's job. Thank you for sharing this part of your life. Friends and family are for the hard times, too.
ReplyDeletePraying for you all. God Bless you!
ReplyDeleteJane
OH Becky, I'm so sorry.
ReplyDeleteThinking and praying for you here :)
So sorry... prayers for all of you. It's so incredibly hard to watch a child suffer and feel powerless.
ReplyDeleteEricka,
ReplyDeleteHelp...I can't look at your blog anymore...sign me up.
Becky
I'm so sorry. I'll be praying for all of you!
ReplyDeleteoh becky, i'm sorry. i will pray for him and you. i need to maybe read back farther..does he have epilepsy? praying here>
ReplyDeleteYes, our sweet boy has Intractible Epilepsy...very hard to control. He is developmentally disabled too.
ReplyDeleteBecky