Adverse Vaccine Reaction Archives | Champion of My Heart

Rest in Peace, Lilly

Lilly, the original canine heroine of Champion of My Heart, died December 17, 2013, following a 23-month fight for her life — after she suffered a severe adverse rabies vaccine reaction.

We posted nearly 190 blog updates between January 2012 when the adverse vaccine reaction first happened on through December 2013 when Lilly died.

That’s a LOT to wade through, so here are a few quick links to some of the most important adverse vaccine reaction information.

when the worst thing happens

Routine Rabies Vaccine Gone Wrong

Read more about the very first days of Lilly’s deadly reaction to a routine rabies vaccine (late January 2012 and early February 2012). Lilly suffered a massive adverse vaccine reaction relapse in August 2012.

answers to everything people ask

Adverse Vaccine Reaction FAQ

TL/DR – It was a terrible experience. Rare, but doesn’t feel rare when it happens to your dog.

Answers to Everything People Ask

Please note: We originally posted these questions and answers when it still looked like Lilly might survive. That was not ultimately the case. Lilly died on December 17, 2013. We’ve edited some of the answers accordingly.

FAQ Part 1 – About Lilly’s Medical History

All about Lilly’s medical history with vaccines and all the questions people ask me about my thoughts & plans after the adverse vaccine reaction

She was 7 at the time of vaccination. She was 8 when she died.

No. She had a complete exam and was perfectly healthy.

Yes. We don’t know much about her vaccination history as a puppy, but she was fully vaccinated at adoption (around 6 months of age). Then, she received a 3-year rabies at:

1 year old
4 years old
7 years old

Yes. In the past in response to a variety of vaccines, Lilly has developed:

A lump at the injection site (about the size of a plum)
A mild fever
Mild lethargy, lasting several days

At first, we simply gave Lilly Benadryl a couple times a day for a few days, and she was fine.

Then, to be more proactive, we began giving Lilly Benadryl BEFORE vaccines were injected, and we began splitting vaccines up. Lilly, then, never got more than one at a time:

So that we could try to isolate the which ones were causing trouble
So that we put less of a load on her immune system

This included giving Lilly the “plain” distemper / parvovirus / adenovirus combo vaccine without leptospirosis included. We always gave lepto separately.

In consultation with our primary care veterinarian, after splitting and predosing didn’t fix the issue entirely, we began predosing Lilly with steroid injections as well as the Benadryl.

We also went to a much more conservative vaccine schedule – with most major vaccines given only every 3 years per the AAHA Vaccination Guidelines. (Because we have both wildlife and water on our land, Lilly had received the leptospirosis vaccine yearly.)

This strategy seemed to be working. Lilly still felt like crud for a few days after most vaccines, but she bounced back and had never gotten deathly ill.

Titers were definitely on the table as an option, but all of us felt because of Lilly’s rural lifestyle, a set vaccine schedule made sense. Plus, we felt like our splitting and predosing was working pretty well.

As Lilly got into her super-senior years, we were looking seriously at titering going forward.

We have no choice. Lilly will never receive another vaccine. It’s just too great of a risk to her life. When the time comes in 2015 to renew her legally required rabies certificate, I will request a medical waiver from the county / state.

I will be writing more about what not being able to have vaccines really means to Lilly’s life and lifestyle later.

No.

I will be writing soon about my bigger views on vaccines in general, after this. For example, I do think we “over-vaccinate” dogs. However, let me be clear about this … Just because Lilly can never receive another vaccine that does NOT mean I am saying that other people should not give vaccines to their dogs.

You can’t know. If your dog has ever had even “mild” adverse vaccine reactions, please talk seriously with your veterinarian about ways to mitigate the risks of a serious adverse vaccine reaction and /or whether or not to vaccinate your dog.

FAQ Part 2 – About the Vaccine & Other Possible Triggers

All about the vaccine itself, factors that people think / assume may have led to the adverse vaccine reaction, and the incidence rate of vaccine-induced meningoencephalomyelitis / meningoencephalitis (inflammation of the brain and lining of the brain and spinal cord) that Lilly developed.

3-year rabies vaccine, which is required by law in Colorado

Just that one

No. The 1-year rabies vaccine and the 3-year rabies vaccine are the same vaccine. It’s simply labeled differently to meet regulatory rules and approved by certain states for required administration every 3 years. Colorado allows / requires a 3-year rabies for dogs.

No. Because of rabies zoonosis risks (can be spread to people), rabies vaccines are noninfectious / killed / inactivated.

No. All dogs – no matter their size – receive the SAME VACCINE DOSE. Most veterinary medications are dosed based on mg per kg of body weight, but vaccines are not done that way. It’s all based on how much of the vaccine is known to provide protective immunity.

In this case, Lilly received 1 cc of rabies vaccine.

You might find it interesting to know that horses – who clearly are MUCH BIGGER than even the biggest dog you know – receive 3 cc of rabies vaccine.

No. As far as we know, there was not a rash of adverse vaccine reactions that would indicate some sort of manufacturing problem.

No. Lilly’s rabies vaccine came out of a single-use vaccine vial.

It’s rare. I’m trying to get some useable data from the U.S. Department of Agriculture, which oversees animal vaccines, that I can share. I had to file a Freedom of Information Act Request, and I’m still waiting for an official reply.

Our family veterinarian who had been in practice 28 years at the time, and she has only seen three severe vaccine reactions:

Lilly
Another dog a few years ago whose case is very much like Lilly’s
One small dog who had an anaphylactic reaction (severe allergic reaction) to a vaccine

I asked one of our veterinary neurology technicians about it, and she said in 8 years of working for the neurologist, Lilly’s is the only case she has seen where this disease was vaccine induced.

No.

Initially, the answer was not that I know of, but as time went on, our veterinarian realized she’d seen dogs who’d survived rattlesnake bites later develop autoimmune issues — nothing like what happened to Lilly — but other autoimmune things, so maybe the bites fired up her immune system. I now warn people whose dogs survive rattlesnake bites to be careful about and talk to their veterinarians about being careful about vaccines for a while afterwards.

FAQ Part 3 – About the Symptoms, Diagnosis, and Lilly’s Original Prognosis

All about how Lilly’s adverse rabies vaccine reaction developed from early stages on through really, really devastating symptoms that made me fall to the floor in tears.

Lilly fell ill within 12 hours of receiving the vaccine on January 23, 2012, with lethargy and injection site swelling. Keep in mind that wasn’t unusual for Lilly, so we continued giving her Benadryl and assumed she would recover as she always had. She did receive preventive steroids at the time of vaccination.

However, Lilly worsened over several days and developed:

Severe lethargy
Fever
Increasing ataxia (wobbly walking)
Cognitive delay
Vision impairment

I’d say Lilly was about 20% of her normal self when we took her to the ER.

I took her to the nearest 24-hour veterinary emergency hospital Sunday, January 29, 2012. Lilly was hospitalized Monday, January 30, 2012, at the nearest veterinary specialty hospital with a board-certified veterinary neurologist / neurosurgeon.

Lilly spent the next seven days receiving round-the-clock treatment. Despite that aggressive intervention, Lilly began having seizures Thursday, February 2, 2012, while still hospitalized.

In the weeks the followed, Lilly developed numerous additional problems relating to the vaccine-induced meningoencephalomyelitis and side-effects of treatment, including:

Vomiting
Hypertension (high blood pressure)
Epistaxis (nose bleeds)
Severe diarrhea

Lilly required another veterinary emergency visit for severe nose bleeds Friday, February 10, 2012.

Lilly suffered a significant relapse, starting April 4, 2012, with lethargy and ataxia, but she has bounced back after the board-certified veterinary neurologist / neurosurgeon adjusted her medications.

Based on clinical neurological examination on Monday, January 30, 2012, and lots of blood work as well as an MRI and spinal tap done Tuesday, January 31, 2012, the board-certified veterinary neurologist / neurosurgeon ruled out all other possible causes of Lilly’s sudden illness, including:

Toxins
Bacterial infections
Viral infections
Parasitic infections
IMHA (immune-mediated hemolytic anemia) – a destruction of red blood cells, where most dogs survive just 2-3 weeks from onset.
GME (granulomatous meningoencephalomyelitis) – a severe and often irreversible form of nervous system inflammation.
Structural lesions in the brain or spinal cord – essentially nervous system cancer or nervous system injury

The final diagnosis was vaccine-induced meningoencephalomyelitis.

We know from the MRI results that Lilly has significant inflammation in these parts of her nervous system:

Upper cervical spinal cord (her neck)
Cerebellum (back of her brain – controls coordination / balance)
Brain stem (oldest part of the brain, evolutionarily speaking – transfers signals from the brain down the spinal cord and affects all sorts of fundamental body processes)
Occipital cortex (toward the back of the brain – also sometimes called the visual cortex)

This kind of inflammation is known as “multifocal,” meaning it isn’t just affecting one spot. That’s important because most “idiopathic” neurological problems – meaning veterinarians really don’t know why it happened – typically have just one symptom. So, the fact that Lilly had multifocal trouble AND other symptoms (lethargy, fever, etc.) played an important part in her diagnosis. There is a reason this happened. That reason was Lilly’s body having an extreme hyper-immune response to the vaccine.

Our veterinary neurologist originally believed that Lilly would recover to 90-95% of normal.

When I was too optimistic, the veterinary neurologist says, “We’re getting there.” When I was too pessimistic, he says, “We’re still OK.”

We ultimately were not OK. When Lilly relapsed 9 months later (worse than even the first days), we knew it would be a fight through the end of her life. I probably should have let her go then, but we got another ~15 months or so together, and that’s not nothing.

FAQ Part 4 – Treatment

About how we tried to save Lilly’s life when the adverse vaccine reaction first happened and then after she relapsed badly 9 months later.

The veterinary neurology team immediately put Lilly on intravenous, massive doses of steroids – along with IV fluids. Once we had a diagnosis, then Lilly did a 36-hour cycle of a chemotherapy drug (cytosine) often used for lymphoma (in people and dogs). Because nervous system inflammation is mostly processed through lymphocyte cells (white cells), this drug works well for cases like Lilly’s. It is given in very different / lower doses than if veterinarians were treating cancer.

There was a risk it would ruin her bone marrow, but complete blood count (CBC) tests done later showed that Lilly’s bone marrow and red blood cells were fine.

Lilly received this chemo drug through intravenous infusions:

12 hours on
12 hours off
12 hours on

Once Lilly began having seizures due to the inflammation in her brain, the veterinary neurology team added THREE different anti-convulsants – Phenobarbital, Keppra, and potassium bromide. When Lilly did have seizures (often 2 close together), the team also gave her some rectal valium.

Lilly also received and continues to take an immune-mediator drug called cyclosporine. It’s often given to people after an organ transplant to prevent “rejection.” It keeps the immune system from attacking the body.

Lilly came home with a LONG list of required medications, including some that needed to be given in the middle of the night:

Dexamethasone (steroid)
Cyclosporine (immune-mediator)
Keppra (anti-seizure)
Potassium bromide (anti-seizure)
Pepcid (to help with digestion side-effects of steroids)
Vitamin E (antioxidant for her brain)

When her steroid-induced diarrhea raged on, we added a couple more “tummy medicines:”

Metronidazole
Tylan

When Lilly’s nose bleeds also would not stop, and we realized from the ER visit that she was suffering from scary high blood pressure, the veterinary team also added a blood pressure medicine:

Amlodipine

As Lilly’s tummy improved, we dropped the metronidazole and tylan. Once Lilly’s potassium bromide levels got up to protective levels in her blood stream (that takes several weeks), we were able to wean her off the Keppra (over two weeks).

Over time, we added some other things like ginger and turmeric supplements.

After her massive relapse in August 2012, we started doing 4 cytarabine injections sub-Q over 2 days every 3 weeks until the end of her life.

No. The veterinary neurologist had us stop giving Lilly her chlomipramine (twice a day) and xanax (as needed) cold turkey. He did not want anything else in her system that could suppress her brain function.

The veterinary neurologist had us stop giving Lilly monthly heartworm / tummy worm preventives.

He also had us stop giving Lilly fish oil since she is now getting the Vitamin E. He said it was OK to continue her glucosamine, but just to be safe, I dropped that as well.

To make up for the lost fish oil, I do give Lilly some organic coconut oil with her meals.

Surprisingly, no. I think it’s partly that she did not feel “well,” but I also think it’s partly because her brain got so slow to process stimuli. Lilly continued to show signs of cognitive delays, and I also think her vision wasn’t great anymore. Those things might have slowed her reaction to some stimuli.

Lilly indeed remained fearful, including reacting to other dogs, loud noises, and other daily life things, but she wasn’t a total wreck. She could function in her day-to-day life OK since her world got very small:

Lilly didn’t go out in public much.
Lilly didn’t take any dog training classes.
Lilly could no think / move fast enough to take herding lessons.
Lilly didn’t interact with other dogs, except her brother / housemate Ginko.

FAQ Part 5 – Costs & Other Questions

About what help we got paying for the costs of of diagnosing and treating Lilly’s vaccine-induced meningoencephalomyelitis / meningoencephalitis (inflammation of the brain and lining of the brain and spinal cord), including how much the pet insurance company paid, how much Champion of My Heart fans donated, etc.

I had it in my head that our pet insurance policy had a maximum payout of $5,000 per incident / body system, but when I got brave enough to look at the fine print, I realized the maximum was only $3,000. So, that’s what they paid … $3,000.

Lilly now has a lifelong exclusion for neurological issues on her policy.

Thanks to many, many generous blog fans, friends, and family members (about 44 of you!), we received another $2,179.12 (after paypal fees) toward Lilly’s veterinary bills.

Yes. Our family veterinarian filed an adverse event report with U.S. Department of Agriculture, which has jurisdiction over things like animal vaccines.

When I didn’t hear anything from the vaccine company several weeks after that initial report, I sent my own letter via email directly to the vaccine company on March 12, 2012.

There is a whole settlement offer section on this page. Keep scrolling to learn more about that whole situation.

they did not pay

Adverse Vaccine Reaction Financial Settlement Offer

Redacted version of the letter sent to the vaccine company asking for financial help paying for the extreme costs of Lilly’s veterinary care, following the severe adverse vaccine reaction

Settlement Saga 1

Once Lilly’s medical status was somewhat stable, I emailed the company that manufactured the rabies vaccine Lilly received to tell them about her case and to ask what funds were available to help pay her veterinary bills. Here’s what happened next.

Settlement Saga 2

This second part of the story covers details on the two legal release clauses that gave me pause, and the mealy-mouthed expressions of sympathy (not taking responsibility) they included.

Settlement Saga 3

The third part of the story explains all the details on why I turned down the adverse vaccine reaction financial settlement. TL/DR list: Not nearly enough money offered; Gag order required; Anti-defamation clause.

Settlement Saga 4

Following several other posts where I tried to be as factual, unemotional, and undramatic as possible – considering the circumstances – allow me, won’t you, to rant?

Settlement Saga 5

The original 5th post about the adverse rabies vaccine settlement offer from the vaccine company — a multinational, big pharma company — included a poll, asking it others would have taken the money. The poll has since been lost.

TL/DR – Ultimately …

I told them to shove it. They only wanted to pay for diagnostics, not the 10s of thousands of dollars in treatment. They expected me to sign a non-disclosure agreement. [Insert eyeroll here.]