That Ever-Changing New Normal Thing
Beau went out with daddy tonight… after waking us up at 4:30 a.m., we thought it would be good for him to be up and out so that he’s not sleeping at home and getting into a habit.
As I’m sitting at home, fresh off the horn with our neurologist (who is a doll), the alarm on my phone goes off. It’s 7:00 p.m. It’s time for Beau’s Pheno. Beau isn’t home.
Fortunately, Beau and his daddy weren’t too far and made it here by 7:20 p.m., but that didn’t stop us from realizing how much our lives have changed since February 22. It’s certainly not easy to be strapped by a 12-hour clock and tonight we were all reminded of it.
Here’s our latest update. Things are about to get rough again for this little guy. He does indeed have liver disease, believed to be MVD (but not confirmed because we refuse to do a biopsy for $650 when the treatment is “go about your normal lives”) which means Beau cannot be on Pheno anymore (it is metabolized through the liver).
On Friday, we are going to start him on Potassium Bromide, which is what I wanted him on to begin with (hooray for small victories!). He will have 3 days of “loading” where he will get 3 full doses a day. Then he will go to once a day… yes, once!! … and the meds can be given anytime… and if you accidentally miss a day? No big deal. Our neurologist said it’s the drug she’d start her own dog on if he ever had seizures.
The downside (because nothing in life can ever be easy) is that Beau will have another 2-3 weeks of an adjustment period where he will be acting like he’s drunk, tripping all over himself, and what have you.
In five weeks time, Beau will be off of Phenobarbital for good.
As far as what’s causing his seizures, all of our vets are in agreement that Beau has liver disease and something else neurological going on. They say it’s probably idiopathic epilepsy, but also warn it could be something more serious like Meningitis. The only way to rule that out would be doing an MRI ($3500) with a CSF tap where they take fluid from his spine. If he does have Meningitis, he would be put on an antibiotic, steroids, and would likely need chemotherapy. And even then there’s no guarantee that he would be cured. If he does have Meningitis, he will be dead in a year. But if we find it, we will spend tons of money and put his through harsh treatment with the possibility that he could still die.
So, we opted to take our chances. Right now, in this moment, I have a healthy, happy pup (who has no clue that he missed his Pheno at 7:00 p.m. causing his mom to have a panic attack. Yeah, I’m still breathing over here).
We hope that his transition to Potassium Bromide is a smooth one and that he adjusts as quickly as possible. We also hope that he comes off Pheno without having any seizures.
Today, we are 42 days seizure free.