Hi guys! We are super overdo for an update on how the girls are doing. Around the end of December, Nova was asking for a nap almost every day. After some lab work, we decided we would once again have to cut out Depakote. It was unfortunately starting to affect her liver. To be honest, I don’t know if it was truly just the Depakote or if it had something to do with her doctor refusing to add on Levocarnitine. This is a med a lot of Dravet kiddos use in conjunction with Depakote to protect their livers. I have heard of quite a few families having success reintroducing Depakote while using this. However, her current neurologist was unwilling to prescribe it until it was too late to continue Depakote use. I am planning on readdressing Depakote when we go to see a Dravet specialist in May of this year. For now, we have her on Topiramate to replace her Depakote. It is definitely not working as well, and she is back to being unable to function in the late afternoons. This week we increased her dose so we will see if that helps at all.
At the end of this month, Nova has her appointment with a surgeon to discuss the possibility of VNS. I am starting to become more interested in this idea due to the lack of seizure control she is having from her meds. At the same time, I am wary of surgery because Nova is so sensory sensitive. I am worried she will really struggle with the healing process.
Last week, Nova was also diagnosed with asthma at the pulmonologist. She just started her nebulizer treatments this week and she has been doing really well with them. We sit down with her and tonight we watched The Big Comfy Couch (my favorite show as a kid), and she did so well. I am glad we caught this when we did, it should help illnesses not be so hard on her as well.
Denver is doing okay lately. She still hasn’t had a tonic clonic seizure in a few months, but her drop seizures are getting a lot more frequent and severe. She gets them really bad after naptime, and on days her teething is bothering her. I am going to contact the neurologist for an in-person appointment for her, because it seems as though he has no concerns until she has her next seizure and I don’t feel comfortable with that plan-especially with her last seizures being so long.
The girls definitely aren’t where I would like them to be seizure control wise, but I am trying to be thankful it’s not any worse. Developmentally, both girls have been doing really well and getting much better with communication. Denver still isn’t walking yet- but she stands completely unassisted often and is doing great with that. Both girls finally got insurance approval for PT/OT and speech therapy, however there is a long waitlist- so hopefully we make way with that soon.
I love and appreciate you all so much. We have some very exciting things coming for Warrior Princesses soon!
Addi Epilepsymama
