Neurology Exam – 14 Weeks Since Adverse Vaccine Reaction Relapse and Counting
This week marks 14 weeks since Lilly’s massive brain inflammation relapse in August. This recovery streak eclipses her previous record of 9 weeks without a setback from earlier in the year. I went into today’s neurology exam expecting we’d continue to wean Lilly’s steroid dose. I was wrong. Here is an update on what we’re keeping, what we’re dropping, and what we’re adding to her treatment plan.
Here are the highlights of today’s neurology exam:
- Steroid Status Quo: We will NOT make any changes to Lilly’s steroid dose, like going to every other day. She is doing well, so she will remain at 0.75 mg of dexamethasone daily for at least 2 more months.
- Drop Incontinence Med: The DES for urinary incontinence is NOT helping much (if at all), so we will drop that from her routine. She had been getting it every third day.
- Add Fish Oil: We will add fish oil back into Lilly’s diet. We dropped it when she first got sick. I had interpreted that as it being a no-no, but I asked today, and there is no reason we cannot add this known, powerful anti-inflammatory back into her diet.
- Drop Coconut Oil: Lilly had been getting coconut oil to replace the fish oil, but now that we’re going back to fish oil. We will ditch the coconut oil.
- Keep All Other Meds, including cytarabine: We will maintain Lilly’s doses of other meds / supplements, including the one given to people after organ transplants and the one for seizure prevention. This includes the cytarabine (“chemo”) injections every 3 weeks.
As you may recall, the decision to use the cytarabine wasn’t easy inside our house. We originally committed to 8 cycles / 5 months worth of injections to give this treatment option a chance to work (or not). That essentially takes us to the end of January 2013, which is a full YEAR since Lilly got the rabies vaccine that started us on this journey.
Today, I said to our neurologist, “I think it’s working.”
He replied, “I know it’s working.”
So, we will talk about cytarabine’s continued use at our next neurology exam in 2 months. Honestly, other than the cost and logistics of driving to / from 4 appointments in 2 days every 3 weeks, the treatment itself doesn’t seem to knock Lilly off her stride. And, it’s the safest possible option. There are other at-home meds we *could* try, but they aren’t as safe or potentially as effective in her case.
Lilly’s next set of injections are slated for Thanksgiving weekend.
As for the decision NOT to mess with Lilly’s steroid dose, it’s ultimately all about keeping her in “remission.” We will NOT risk a relapse, especially over the holidays that are going to be tough for us anyway with this year’s losses.
While the original goal may have been to drop the steroids entirely at some point, the new goal is more about getting to the lowest possible working dose — for the rest of her life. That dose just might be 0.75 mg + cytarabine injections.
As for the unrelenting incontinence (both ways)? It seems to be the new normal. It’s time consuming and frustrating and messy and smelly, but Lilly cannot help it.
Our dog diaper plan seems to work well most of the time, and I’ll just keep doing LOTS and LOTS of laundry. (Our dryer died … even though I almost never use it. Our washer is on its last legs, and soon Tom will need to replace our well-pump pressure tank, but those are $$ details for our next $$ update post.)
I would still like to try some acupuncture for the incontinence, if I can find the time and money for it.
While no one on our team is ready to say everything is going to be OK, today was as optimistic as we’ve been in a long, long time.
I forgot to bring our camera to the veterinary hospital today — amid remembering everything else Lilly might need for the trip, so here is my lame / best attempt to get a cool photo of Lilly’s eye.
(That’s my red sweatshirt showing.)