THIS IS THE MOST IMPORTANT THING YOU WILL READ ON THIS WEBSITE! This section is where you will hear from the Guardian Angels about the thing(s) that have probably helped them the most in reducing seizures. It includes those tips, hints, tests, diets, medication information, etc. that if they had known about from the start might have made their individual experiences with canine epilepsy a lot easier to deal with. AND, quite possibly would have achieved better control of their dogs' seizures more quickly!
From Keno's first cluster, I would have had the valium protocol on hand. I would probably not have used Phenobarbital. Given the severity of his seizures, I may have had to begin with it, while Potassium Bromide was getting to the proper levels, but I would have relied more heavily on KBr. I would have relied more on my knowledge of my daughter's individual maturity, instead of her calendar age. She had her 'job,' which was to get the towels to put under Keno's head, and to talk to him, since she was 'his girl,' but I should have taught her to use the valium. I would not have had him vaccinated; I would have tried titers first. One of his most severe episodes came after vaccination. I would never have given him rawhide - although we had always supervised the dogs when they had rawhide, I didn't know the dangers from the ingredients. Another severe episode came after rawhide. I would have fed him a more natural diet from the beginning; although none of my current pups are epi, they are all eating a much better diet now.
I would not have been quite so terrified to start my beloved boy on anticonvulsant medication, because the seizures have responded beautifully...he is more than three years seizure free! However, I would not have started Dude on Phenobarbital first. Because Dude was never a cluster kid, I could have tried potassium bromide on a maintenance dose basis (in other words, not a heavy loading dose). Dude did well on Phenobarbital for nearly two years, until it caused him liver damage.
Because I did timely bile acid testing, I had the blessing of enough time to safely reduce the Phenobarbital very slowly while the potassium bromide built up to therapeutic levels in his bloodstream. I most definitely would have relaxed and believed that Dude would have a very normal and happy life; that the medication would not turn him into a zombie and compromise his wonderfully sunny Border Collie personality. My boy is closer to 12 than 11 and he still plays with the spirit of a puppy! He is truly a blessing.
I would have found a vet familiar with seizures or one willing to listen and started Alex on Potassium Bromide right from the start. I would have insisted on the Thyroid 6 panel test from the start and done more research on what Phenobarbital can do to a dog. I would have had pre and post bile acid tests done much sooner and I would have fed better foods and treats. I would have searched for a group of knowledgeable people to share my feelings with much sooner. I still would have gotten my pups...they are the loves of my life! I just would have been better prepared to help them.
If I knew all of things that I knew now I would change so many things. I would have changed her diet and not fed just to the store brand food. Even when I first learned Irie had epilepsy I wish I knew of all the natural things we could use. Now I know about Rescue Remedy, Melatonin, Valerian Root, Milk Thistle and even just the ear massage techniques. I would have tried to lower her stress levels and kept her calmer during storms. I would never in a million years trade my experiences with Irie or all of the wonderful things and people she has introduced me to. I think I have grown so much as a person and learned so much through Irie and her epilepsy. I also would realize that not all vets have knowledge in epilepsy and that a vet who is willing to learn and work with you is the most valuable asset you can give to your pup and yourself. I also wish I knew back then about thyroid testing and the link to hypothyroidism and seizures.
Reading my bio you will see how a simple 6 panel Thyroid test was not taken until it was too late. This could have saved my pups life. I would have insisted the veterinarian conducted the test or taken Mozart to another vet. I would have realized that whenever he was in ER they were not giving him his proper meds because he was sedated and they didn't see the importance of "missing one pill or two." I would have administered the rectal and oral valium protocol a lot sooner then I learned of it. This not only would have saved me a great deal of money at the ER but also safer on my pup. I would have changed his food and made it healthier for him. I would have had the gold bead acupuncture procedure done a lot sooner. What I would have done if I could have was found this list of people and Guardian Angels to have learned then what we all have learned now.
I would have never started any of my previous epi babies on Pb and would have started them on KBr first. I would always have oral and liquid valium on hand.
Vets: Changing vet clinics. Seeking out the advice of a neurologist to work with the treating vet. Finding a vet right from the start that was interested in furthering his/her education of canine epilepsy.
Valium: I wish I had the liquid valium sooner. I took a long time to find a vet that was willing to give me enough to have on hand to keep him from clustering and a prescription for oral valium.
PB vs. KBR: Not using Phenobarbital at all and starting with potassium bromide.
I wish Tahoe's former vet didn't keep upping the dose of pheno til he was maxed out and then trying potassium bromide. Lowering the PB dose and increasing the KBr sooner rather than later risking further liver damage.
Melatonin: Using it nightly has made a significant difference in the amount of and frequency of night time seizures. I use 3 mg 30 minutes before bedtime
I would NEVER feed Leo anything with the preservatives ethoxyquin, BHA, or BHT, which caused him to cluster. When we first started him on thyroid medication, I would have given him Soloxine instead of the generic thyroid. And I would have sought out and switched to a vet who knew something about epilepsy and its triggers, rather than letting my vet learn on Leo. Most important, I would have read the information on the Guardian Angels website!
I would never have used strong medications (such as prednisone, strong, broad spectrum antibiotics and antiparisitics, etc) with Dixie's allergies and tummy troubles when she was a puppy. I would not have over-vaccinated her, either, and I would have given her home cooking from the start. If I would have conducted much more research, all the way around, I could have entered the venture of caring for a dog in a more educated and responsible way. And, I could have approached our Vet from a different standpoint, not having taken his/her advice at face value.
I often say that I would never again purchase a dog from a backyard breeder, but that is probably not true. If Sam was not with me I shudder to think where she would be, and I am always concerned about her litter mates. (there were 11 of the cute little balls of fur...and I have no idea where they all are) I would have been more conscious of diet. I think that is the one big thing that many of us tend to be lax on. I always fed a 'decent' brand. Not the bargain basement food, but pretty close! I thought people were nuts to spend too much on dog food! I will never feed my dogs 'economy' food again! They still could eat way better than they do, but I am satisfied that they are getting the best I can give them without another mortgage! (I have Large dogs!) I was lucky that I had the time to research medications before I started Sam on KBr. I had time to make an educated decision and I have no regrets. I am so glad I found the group of caring people I found with time and experience enough to help me along the way. I never would have questioned my vet before this all started, but now I do it all the time! If she does not like it, I know that she is not worthy of us! As long as she is open to discussion and willing to learn we will continue to learn with her. Because of some great help from some great people, I did not have time to make a lot of mistakes! I will always be indebted to them for their caring!
I would have always feed my babies healthier and I wouldn't have been so naive and learned more sooner about seizures, the medications, etc. I would have started Zak on Kbr before any other medications and had a thyroid test done right after Zak's first seizure.
I WOULD RUN BILE ACID TESTS QUARTERLY. Pheno levels & liver panels aren't enough. Harley was ALWAYS, ALWAYS, ALWAYS below therapeutic levels. Pre and post bile acid tests will indicate problems so much earlier than liver panels & give you time to reverse any liver damage.
I WOULD QUESTION MY VET MORE OFTEN. Most vets are wonderful, kind people who do what they do because they love animals. If your vet truly wants to help you, he or she will listen to your suggestions and answer your questions. Remember, they have hundreds of conditions to treat. You have epilepsy to treat. Help them help you by being informed.
I WOULD HAVE FOUND A NEW VET SOONER. Our first vet did not want to read any of our research or run the tests I asked for (i.e. the full 6-panel thyroid test). Finding a vet who was willing to work with us and who was experienced in treating dogs with epilepsy was a huge factor in keeping Harley well.
I WOULD INSIST ON SPECIFIC TESTS SOONER. The most important tests I wish we'd done immediately are the full 6-panel thyroid test, food allergies, and bile acids.
I WOULD HAVE INSISTED ON POTASSIUM BROMIDE SOONER. I would have educated myself & my vet on this alternative. Potassium Bromide does not damage the liver.
I WOULD HAVE ASKED FOR HELP SOONER. That's what the Guardian Angels are here for. This is the most caring group of people, people who devote themselves & give of their time & energy without question.
BOY, what I would do differently!!!
First of all, I would be more calm and confident that my little girl was not going to die! Those first seizures are terrifying and so emotionally exhausting. Having the knowledge that you are doing the best that you can is very calming and helps to keep those raw nerves at bay especially if your dog is a clusterer.
Second, I would have resisted putting Missy on Phenobarbital and would certainly have stopped repeatedly increasing her dosages. Some dogs tolerate PB very well and others do not. Missy is a clusterer and the PB had absolutely NO effect on her seizure pattern, but my vet and I didn't know what to do except to keep increasing the PB. I would have insisted on starting KBr and having her thyroid tested sooner, since it turned out she was also hypothyroid. Sadly, after two years, all of the PB has finally caused liver toxicity for Missy, causing a whole new struggle.
I would have also been more insistent on getting the rectal and oral valium protocol for her clusters. I was finally able to get it, but had to go to the Ohio State Veterinary School to do so. My regular vet wouldn't even consider it for me saying it was "too hard for a lay person to administer" (which I found out is NOT true).
And even though I've never been able to find a trigger for Missy's seizures, I would have changed her diet sooner. I have no doubt that the home cooking diet she is on now is much healthier for her.
I WOULD HAVE INSISTED THAT TEDDY BE STARTED ON KBR SOONER. Teddy was on Pb. Two vets indicated that the control we had (seizures about once a month) was pretty good. But Teddy’s seizures were very violent ones—they would sometimes flip him halfway across a room, and if I didn’t get to him fast, his head would be bloodied from hitting the floor so hard—and he sometimes clustered. Our vet was reluctant to start him on KBr; I later discovered this was because the vet was unfamiliar with KBr. But once Teddy was on KBr, he stopped having seizures altogether. We’re currently over two years seizure-free. I don’t think this is entirely due to KBr—not by a long shot—but I also believe he never would have been able to have good control on Pb. Incidentally, we had to take Teddy off of Pb because it damaged his liver. Had we gone onto KBr sooner, this would not have happened.
I WOULD HAVE PUT TEDDY ON MELATONIN RIGHT AWAY. Melatonin was the first things the Epi Guardian Angels suggested for Teddy, since most of Ted’s seizures were at night. Melatonin stopped Teddy’s nighttime seizures cold.
I WOULD HAVE SUPPLEMENTED TEDDY WITH TAURINE FROM THE START. Teddy used to startle very easily, and he used to have huge "jerks" that seemed like one-second seizures. I later learned that, in humans, these are called myoclonic seizures. Once we put Teddy on Taurine, he became much calmer and the myoclonic seizures stopped. His other seizures became much milder, and his post-ictal period went from manic to very mild.
I WOULD HAVE GIVEN TEDDY MIDDAY SNACKS AND NIGHTTIME SNACKS. I learned from Joanne Carson that low blood sugar can contribute to seizures. Teddy begins to pace when his blood sugar gets low. We keep him from getting to that point by breaking his meals down into two modest-sized meals and two substantial snacks, one at noon and one right before bed.
I WOULD HAVE REALIZED SOONER WHAT AN INVALUABLE TOOL A SEIZURE JOURNAL WAS. It was from reading and rereading Teddy’s journal that I discovered his pattern of having seizures “between meals.” The snacks really helped cut out these seizures.
I WOULD HAVE BEEN MORE AWARE OF HOW STRESS AFFECTS SEIZURES. Teddy, bless his heart, has changed our household for the better. I keep my stress levels under control because I can see that Teddy picks up on these very easily. We keep noise levels down and lights low during the evening. We play soft music for Teddy when we have to leave him alone. All of this has turned Teddy from a very nervous boy to a very, very calm one!
I WOULD HAVE PAID MORE ATTENTION TO SUBSTANCES THAT CAN TRIGGER SEIZURES, AND REALIZED THAT THESE ARE NOT ALWAYS LISTED CLEARLY ON FOOD/TREAT LABELS. It wasn’t until Teddy had terrible cluster seizures after eating some new "cookies" I bought him that I discovered (after checking the product’s website and then calling the company) that the company had changed the formula, and now had rosemary as a preservative. They had not yet changed the packaging, although they had changed the ingredients on their website. Since this time, I am very reluctant to change anything in Teddy’s diet without doing research on a new product first.
I WOULD HAVE CONSULTED WITH A NEUROLOGIST SOONER. Although I was dreading the cost and assumed that an MRI would be the first thing the neurologist insisted on, this was never even discussed, and the charges were not exorbitant. The neurologist was able to put Teddy on KBr, and seemed more knowledgeable about "tweaking" the dose of the medicine to get best results.
I WOULD HAVE REALIZED THAT I WAS TEDDY’S ONLY ADVOCATE, AND I HAD TO EDUCATE MYSELF AND BE PREPARED TO PRESENT WHAT I LEARNED TO TEDDY’S DOCTORS. I used to think I was strong and assertive, but I’ve had to learn to be much stronger, to help Teddy. I had to make sure I printed out anything Ted’s doctors needed to know, and I had to be prepared to back up anything I wanted to do for Ted with the research I’d done and records I’d kept.
I would have been home-cooking for Paxon all along.
I would have kept a binder of information. This binder includes all the
great information that I’ve received from Joanne and the Guardian Angels, such
as e-mails and articles printed from the site, emergency contact numbers, step
by step instructions as to what to do before, during and after a seizure.
There is also an index and I’ve used large font type so that information is
easy to find and easy to read by anyone who might be with Paxon at the time of a
seizure. I have a copy in the kitchen, office, backyard and car. My
family, friends and neighbors all know where to find it.
I would have kept a journal of Paxon’s behavior and any food, medication or
I would have been aware as to when my neighbor’s gardeners were using lawn
chemicals and tree sprays (this took place the day Paxon had his Grand Mal).
I would have more quickly found a veterinarian and a neurologist who were
open to learning more about seizures and who were open to the Valium Protocol.
So many times I heard “Paxon is over five years old? Well, then it’s a
brain tumor”. Rather than assuming this was correct and giving up, I
followed the advice Guardian Angels advice, and Paxon has been seizure-free
since his initial clusters, which were on June 9, 2006.
I would have insisted on specific tests sooner and would have sent blood work
directly to Dr. Dodds at Hemopet for testing and interpretation.
I would have been educated about seizures, especially to know the warning
signs. For example, hours before Paxon had his Grand Mal, he was making
strange little movements with his mouth, as if he was chewing gum or eating
peanut butter. I did not realize that these were small focal seizures and
in Paxon’s case, were warnings of the Grand Mal.
I would have taken an “emergency seizure kit” with Paxon when ever we
left the house.
I would be more willing to start with the anticonvulsant medications sooner while also pursing alternative treatments like acupuncture and supplements as an add-on.
I would not be worried about hurting my vets feelings and would have worked with several vets in order to get different opinions on how best to treat Jaff. I really learned that vets don’t know everything and they must be willing to work with you for the good of your epi, even if it means reading information from our website or consulting with Dr. Dodds.
I would try harder to control my own stress. This disease can really age you. I should have taken better care of myself and tried to relax more during the seizure free times.
If I was starting out again, these are some of the things I would do differently:
Insist on getting a 6 panel thyroid test done, even though I believe this is not currently available in Australia where I live. I would arrange to have it sent to Dr Dodds' laboratory for her analysis. Even if a thyroid problem was not detected, at least I could rule out one possibility.
I would not revaccinate annually. If a problem with a particular disease occurred in my local area, I would get titers run first to see if revaccination was warranted.
I would be more careful with heartworm preventives and also flea products. I would avoid using products with "PLUS" and just use the normal formula.
I would get my vet to double check any medications prescribed for other conditions (i.e. vomiting, allergies) to make sure they were as safe as possible for an epileptic dog taking AEDs.
I would have researched this disease at the onset of Tasha’s seizures instead of blindly accepting the doctor’s advice and solely using Phenobarbital. Research would have led me to information about Potassium Bromide and I would have pursued its use. We would have achieved better control through it from the early days of this disease. We suffered 3 ½ years of status seizures since Phenobarbetal has never controlled Tasha’s seizures well.
Furthermore, she was developing liver dysfunction from it and we were told that “these dogs don’t live long lives because of the effects of Phenobarbital”. Self-education taught me how to handle potential liver damage. Through the use of home cooking, Milk Thistle and Hepagen-C we achieved normal liver values.
Through education I learned that a combination of Phenobarbital and Potassium Bromide would be safer in that we might not have to use either one in the extreme, thereby preserving the integrity of Tasha’s organs. Achieving the delicate balance of few seizures and liver and pancreatic health is possible, but the task falls to the Moms and Dads. I wish I would have realized that years ago.
I would have searched the Internet sooner and found the Guardian Angels when it became obvious that the veterinarians in my area of rural PA, although well meaning, knew very little about epilepsy. I would have trusted my instincts that kindling was a reality and made sure Molly was given an epileptic drug when she was having seizures every two weeks. I would have started Molly on potassium bromide instead of large doses of Phenobarbital. I would have fed the healthy diet and supplements instead of commercial dog food. We fed Molly high-priced premium kibble, but had to keep switching because she never continued to like any of it. (Smart dog!) I would have used the ice pack and used the Valium protocol to prevent so many of the cluster seizures. I would have given Molly Taurine during the day and added melatonin at night, which really seems to prevent nighttime seizures. I would have made sure that I had liquid Valium on hand in case of status instead of relying on Valium suppositories, which have not been proven effective.