Steady As She Goes
Friends and family who live out of town have been asking for a Vista update. So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie. Oh come on. You know you want to share…
Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on. She did really well on her first med, Clobazam, until a growth spurt rendered it useless. She was on the highest dose do the decision was made to add a second drug, Trileptal.
After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess. They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures. So, getting her seizures under control has become priority #1 in her medical regime.
At that visit we also got V’s latest diagnosis: Symptomatic Partial Epilepsy
Not a huge shock, since she’s been seizuirning for 3yrs. What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.
Unfortunately we haven’t made it two weeks yet.
V hasn’t done really well on the Trileptal. The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.
So, they’ve now added in a third med called Valproic Acid. She’s only been on it a few days, so only time will tell how this one works. We’re keeping our fingers crossed that third time is a charm.
The down side about the Valproic Acid is that she’ll need her levels checked. This means the blood tests. But really, if it controls the seizures, it’s worth a few needle sticks.
On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy. Yay! Pizza and ice cream for everyone! We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.
All and all, she’s doing not too bad. She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.