Epilepsy lay sleeping deep within our beautiful liver girls brain, until one day in late July of 1994, it reared it's ugly head and in that instant our lives were changed, never to be the same again. She was 15mths old and had received her booster vaccinations just three days before and had also just come out of season. We believe now that both of these events were the trigger.
During the first episode I didn't realise exactly what was happening. Out of the corner of my eye I saw her on the floor on her side her legs making a paddling motion. At first I thought she was itching and rubbing her side on the carpet, but had a funny feeling deep inside, that it was something was very wrong. It was over very quickly and I pushed it to the back of my mind. The next day she fell at my feet on her side and repeated the same motions this time with a little foam appearing around her mouth. I immediately took her to the vet who told me what I already had begun to suspect that she had had two "partial" seizures. Within 24 hours she fell once more but this time it was the first of many terrifying Grand Mals that were to haunt our lives over the years. I rushed her to the vet who put her on 65 mgs of twice of Phenobarbital a day, I can remember crying on my way home, realising that my beautiful liver girl, who was my first show dog, could never be bred and would have to be spayed. I felt immense anger, however after a while I made peace with my feelings, at least it wasn't cancer, at least I wasn't going to lose her. She was spayed as soon as possible during the "quiet" time between her season to avoid added stress from hormonal changes. We added Potassium Bromide (KBr) in capsule form, after the first year because the seizures were no longer being controlled,this seemed to help for a couple of years. However, we never knew when she would have a seizure - as a friend of mine said, "it's like waiting for the other shoe to drop". Nothing makes you feel more helpless than watching your beloved pet contorted on the floor at your feet during a seizure. On the bright side, however, this very special girl is a bundle of energy and loves rough housing with her little "sister" Tessa. (Emma isn't really a sister to Tessa we just call her that)
When we had our Jester X Tinker litter in '95, Emma became "Auntie" to the puppies and helped with the duties of cleaning the pups and teaching them about the big wide world once they could go outside with her. We kept one of the pups now known as "Tessa" and the two are best buddies
Since writing the above statement Emma has started to deteriorate. The seizures have started coming every 2-3 weeks (or more often) and she is suffering from ataxia (muscle weakness in limbs) and appears to be "stoned" much of the time. There has been no change in the medication BUT there has been a big change in her. I felt it was time to investigate other means of helping her and have turned to an holistic vet Dr Mona Boudeaux. She was given an homeopathic remedy "Thuya" to try and combat the toxins that had built up in her body. For about 24 hours Emma was so sick, she could hardly walk without falling down, however all of a sudden things are starting to change. She is beginning to run now without falling over and looks a lot happier. Later we will add Chinese Herbs to her drug regime and try and lower the dose of Phenobarbital . If this doesn't work, we will go to gold bead implants. She is also on Borage Oil to raise the fat level in her diet. I will continue to update her progress on this page.
Emma took a turn for the worse since the last update. She became so ataxic that she fell down a long flight of steps three times, she looked like a brown and white slinky toy slowly slipping down the stairs. She couldn't turn around without falling over. If she found herself in a corner she had no idea how to get out of it. I thought a week ago we were going to lose her. My regular vet agreed that she needed to be removed from the Potassium Bromide as it looked very much like Bromide toxicosis, even though the last levels had been within the so called theraputic range. KBr has a half life of 25 days and so we didn't expect to see much change to begin with, but within 24 hours she was quite a bit better. We started her on a blend of freeze dried Chinese herbs that my holistic vet has had great success using with epileptic dogs. For now she is medicated with Pheno and the herbs. Her diet is Wysongs Anergen 1 Lamb and Rice, along with Dr. Pitcairns Healthy Powder and the Borage Oil. At the time of writing she has been 7 weeks seizure free.
So for now we wait and hope that the Pheno and the Herbs can hold her. She is back to her old self now, the light has returned to her eyes,they no longer look dull and vacant, she no longer stumbles and can run and play with Tessa. Please everyone keep your paws and fingers crossed for my baby.!!!!!
We now know for sure that Emma was definitely suffering from Bromide toxicosis. Her blood level for the KBr was 4.06 The acceptable values go from 1-3 at the lab my vet uses. Her pheno level had fallen to 18.5 low normal. Ironically the reason she has been seizure free so long, was because of the high Bromide level. We still don't know why it suddenly doubled.However we now realise that the symptoms had been coming on very slowly for the past year, we just hadn't put two and two together.
She seizured on the 11th & 12th, small grand mals, but she came out of them much quicker than usual. At the advice of my Holistic vet I used one of the Bachs Flower Essences, Rescue Remedy. I put a drop on her top of her head on the acupuncture point there, and also in the inside of her cheek. She came to immediately and didn't go through the 1 hour of post ictal pacing that she normally does. My first reaction was to up the pheno however I was persuaded by my Holistic vet to leave it a while and see what happened. So I am waiting, so far so good, no seizures in over 48 hours.
She has seizured three more times so I have upped the dose of Phenobarbital to 150mgs twice a day. The seizures are much less violent than they used to be but still Grand Mals. No post ictal phase afterwards so hopefully we now have that under control using the Rescue Remedy. The goal is still to wean her off of the pheno and just use the Chinese Herbs . My beautiful brown girl is back for good, I never want to see her go through that again.
Emma seems to have settled into a pattern of having 3 seizures a week. We have now raised the Pb to 180 mgs twice a day. I have contacted my holistic vet and we are going to give a slightly different version of the Chinese Herbs and up the dose to 1/2 tsp twice a day. If all fails then we will go to gold bead implants. However two things are different. The seizures are less violent and last only about 50 secs as opposed to 2-3 mins AND there is absolutely NO post ictal wandering and pacing, and appearing blind and deaf. For many of us that own seizuring dogs this is the worst part. We still hope to eventually be able to lower the Pb. Even on the high dose of Pheno she is her old sunny, fun loving self, always ready to put Tessa in her place in no uncertain terms.
It appears that the Chinese Herbs are working along with the 180 mgs of Pheno 2x a day. The seizures for the past 6 weeks or so have been coming about every 15 days. They are still Grand Mals, they last only about about a minute and there is NO post ictal. However a new challange has arisen, a lick granuloma on Em's right front ankle. We have tried the usual things, Bitter Apple, Banamine, & antibiotics. I have put Habanero Sauce on the vet wrap that covers the sore, she says "yum yum" and licks it off. Luckily she leaves the vet wrap on so I am thankful for small mercies. We have added 50mgs Zinc to her pill schedule, it has been found to be effective with dogs who have compulsive /obssessive behavior but so far nothing has changed. The next thing to try is a homeopathic remedy Essence of Snapdragon. Sounds wacky but several people have had terrific success using it and it's not that expensive so we'll give it a try for a while and report back how on well it works or doesn't as the case may be.
We have also noticed her licking other parts of her body especially her abdomen and suspect that she might have a food allergy . We are no longer giving her the Dr Pitcairns Healthy Powder and will change her food from the Wysong kibble back to Nutro Natural Choice Lamb and Rice. One thing that worries me is that she might be allergic to the Chinese Herbs, if she is then what? I hate to think!!!!!!
Emma has been taking the Snap Dragon Essence for one week, for the lick granuloma and still no change <sigh> My poor baby if it's not epilepsy it's something else. I called Dr. Boudreaux, Emma's Holistic vet yesterday, and she said to apply a poultice of Betadyne and brown sugar and then wrap the leg with vet wrap as usual. However before that Dr Dan, Em's regular vet is to inject around the sore in the North , South East and West positions with Vitamin B12. This is called "Circling the Dragon" in Chinese Medicine.
One of Emma's Christmas
presents was an Elizabethan Collar courtesy of Dr Dan. I hated
to do it but when we took the wrap off at his office it was obvious
that things were getting very bad. Instead of improving the sore
looked much much worse and we agreed that it needed to dry out
so there was no choice. She accepted it with no problem, I think
it worries us more than her. However the bad news is that she
has had 4 seizures in 36 hours, we are now fast running out of
options. It's obvious the Herbs aren't holding her as we had hoped,
the Pheno dose is high, (we need to check blood levels again)
so I am going to push now for the goldbead implants that have
helped so many dogs on the All
Breed Canine Epilepsy List. (Epil-K9) We live in New Mexico
and it would take 3 days to drive to Indiana to Dr Durkes who
is the guru of Gold Bead implants. However he does help other
acupuncturists to do the procedure over the phone so I am hoping
that we can explore this possibility. Just hope the New Year brings
relief to our brown girl.
Emma ended up having 5 seizures in 72 hours and Dr Boudreaux and I have agreed that she will get her Gold Bead Implants sometime during the 3rd week in January. Blood levels and liver function tests are being performed to see what the Pheno level is and to make sure that the liver isn't being compromised by the high dose of Pheno. Blood levels for pheno should be checked at least twice a year and liver functions at least once a year.
The lick granuloma is beginning to heal since putting on the E collar.
Here's hoping that 1998
will be the year that Emma and all of her friends on the Epil-K9
list can find some relief from the Monster called Epilepsy
Emma will have her Gold Bead Implants on January 22nd. Her blood work showed that we cannot increase the Pheno as the trough level is 38 which is high normal. It also showed the Alkaline Phosphatase to be rising, so to help the liver we have started to include Milk Thistle in her supplements. There have been no more seizures since Dec 29th.
Emma had her gold bead implants yesterday, in Albuquerque NM, and so far everything is calm, she hasn't seizured in 25 days which maybe the Chinese Herbs finally kicking in we aren't sure, however yesterday hopefully will be the real turning point. Dr Boudreaux & Dr Holland have their own way of determining the accupuncture points to be treated, they use their fingertips to feel the energy blockage. I asked exactly how they could tell and they both told me that it they can't put it into words they just "feel" it.
Once she was anesthetized using isoflurathane, they shaved her head and neck, back and lower back near the tail. Dr Boudreaux had contacted Dr Durkes the day before and knew the acupuncture points that he generally treats and she found that indeed these applied to Emma.
They treated 24 points in the head, neck back and lower back, and the right side bled more than the left. The points that relate in Chinese Medicine to the stomach and the gall bladder seem to be the most affected, at least they bled the most. The gold beads were implanted at a depth from betweem 1/4 " in the head to 1 1/2" in the back. There were no stitches involved, the tiny beads were inserted under the skin into the muscle using a special syringe. Before Emma came out of the anesthesia they gave her valium to safeguard against a seizure. The surgery took about 45 minutes and she was back with us a couple of hours later. She slept most of the way home, had her dinner and then romped with her little sister Tessa. This morning she was fine, in fact better than fine. She normally has a string of small focal seizures in the a.m and p.m before food, in fact many of her seizures have been connected with this time period, however blood work has not shown any problem with hypoglycemia so we suppose that food is one of the triggers.However today my husband reported that the first time in a long time there were no tremors, so now we wait and see what happens over the next few days. All I can say is that Emma is very perky and happy.
We also rented a small "laser" machine from the vet. Dr Durkes said he has had sucess using this for lick granuloma's and so we are trying this.
The last time Dr. Bourdeaux saw Emma, she was becoming toxic to KBr, Then she saw a dull eyed dal who could barely stand , this time, she saw an inquisitive, perky young lady, who ran up to her and when she kneeled down to hug her, put her chin on her shoulder andpressed her face against hers. What a change.!!!!!!
However, Dr Boudreaux
stressed that as far as she is concerned surgery is the last resort
after traditional methods and especially Chinese Herbs have been
Emma had a seizure on
25th January and another one on the 26th. They were short, less
than a minute, but they were grand mals, there was no post ictal,
we used the Rescue Remedy as usual to prevent it. It's still early
days yet. Regular accupuncture takes several sessions before any
change can be seen. The gold bead implants are a form of permanent
accupuncture and it will be a while before we can see if this
Emma is still seizing ever 8-10 days often two days in a row and then a space of another 10 days or so. I still haven't given up hope that the Gold Beads are going to work. There is a difference. No longer does she tremble before meals or any other time. We used to be able to tell when her seizure threshold was getting low because of the trembling but that no longer happens so maybe........ Cross your paws everyone. I am going to add Vitamin B complex which is recommended by Dr Pitcairn and also the University of Florida. I really believe the answer lies in holistic /oriental medicine in combination with traditional (allopathic) medicine. Many people on the Epil-K9 usevitamins & supplements for their dogs. A very helpful site for searching for an holistic vet in your area is http://www.holisticvetlist.com/ contains listings of holistic and homeopathic veterinarians by state.
It's been five weeks now since the implants and sadly there has been no improvement.Wednesday she had two seizures, and this morning she had another one. My only consolation is that they are very brief less than a minute, and with none of the dreaded after effects that plagued her before she went on the Chinese Herbs and Rescue Remedy. I have consulted with Dr Boudreaux and I am going to start to cook her meals for her rather than use commercial kibble. She has been fed various forms of lamb and rice all her life, maybe she is allergic to it? If all fails and she starts to get worse then she will go back on a low dose of liquid KBr so that we can adjust the dosage easier. When she was on it before we used the capsule form. I am also starting to put Prozyme (natural enzymes) on her food to make sure she is utilizing all of the nutrients possible.
Emma still has bald patches where she was shaved for the implants, the hair is taking a long time to grow back. She is still wearing the E.Collar, the granuloma is healed but the hair hasn't grown back over it yet. We allow her to go without it when we can monitor behavior, I'm hoping that when Tessa has her puppies in the summer that Emma will once again become Auntie Emma, and will lick the pups instead of her leg. :)
Still no change in the seizure pattern. Emma went 10 days after we started the home cooked diet and then had two seizures this week. Dr Boudreaux has added DMG to Emma's growing list of supplements. In the "Prescription for Nutritional Healing", (Balch and Balch), it says Dimethylglycine (DMG) is a derivative of glycine, the simplest of the amino acids. It acts as a building block for many important substances, including the amino acid methionine, choline, a number of important hormones and neurotransmitters, and DNA. Low levels of DMG are present in meats, seeds, and grains. No deficiency symptoms are associated with lack of DMG in the diet, but taking supplemental DMG can have a wide range of beneficial effects, including helping the body maintain high energy levels and boosting mental acuity. DMG has been found to enhance the immune system and to reduce elevated blood cholesterol and triglyceride levels. It improves oxygen utilization by the body, helps to normalize blood pressure and blood glucose levels, and improves the functioning of many important organs. It many also be useful for controlling epileptic seizures".
I'm afraid the news still isn't good. Emma has had three seizures in three days <sigh> so we are now trying one more thing before putting her back on Kbr. One of our Epil-K9 list members has been using Natural Progesterone in Vitamin E with good results. When Emma was on Prednisone for her lick granloma she went 25 days without a seizure. Once off of it she started seizing again. Working on the premise that the Prednisone was taking down inflammation in the brain and given the fact that Natural Progesterone is a major "neurosteroid" it is worth seeing if it will have the same effect. Today is DAY 1, once again here's hoping !!!!!!!! Fingers and paws crossed please!!!. I am having some second thoughts about the homecooked diet as Emma has been exhibiting a really foul odor from her mouth and body. However it may turn out to be lactose intolerance in which case I need to find a replacement for the cottage cheese supplement. At the moment she is on half home cooked food and half Nutro Lamb and Rice.
By the way the lick granuloma is no longer an issue and the E Collar has been put away, at least that's one problem solved.
Emma has been on the Natural Progesterone in Vitamin E for 11 days now. She has had one seizure on Tuesday, we upped the dose from 1/8th tsp twice a day to 1/2 tsp spread out over 3 doses. We measure it with an eye dropper and it comes out at 6 drops three times a day. It's still much to early to know if this is the magic bullet. She has only seizured once as opposed to last week when it was three days in a row. The odor that I mentioned last week has disappeared since stopping the cottage cheese so it looks as if I was right, she is lactose intolerant.
Yesterday Emma had one of the most violent seizures ever, only five days after the last one. It only lasted a minute but it seemed like forever. One problem that makes it worse is that Tessa (my other dal girl) goes into attack mode as she hears Emma fall at the start of a seizure. Many people who own an epi-dog and have multiple dogs experience this, it is a very primative instinct, however it makes a seizure that more frightening. I have made the decision to put Emma back on the liquid form of Potassium Bromide (KBr) at half the dose she was originally on. I think using the liquid, we will have better control over how much KBr we give her as adjusting the dose will be much easier. It is also almost 4 times cheaper!!!. Those of you who have been following Emma's history know that this is not what I wanted to happen, however none of the alternative methods have worked, and I need for Emma to be under much better control than she is now. Tessa is to be bred next week, and the thought of trying to whelp puppies and never knowing when Emma is going to seize is just too much. This time around though, we know the early signs of toxicity which can come on almost unnoticed. Some early signals are, top line beginning to sag, inability to sit up straight, lack of muscle tone in rear legs, inability to walk very far (that for Emma means 10 or more miles!!) haunted and distant look in eyes, the later stages are much more pronounced versions than the early stages and are easily seen.
So with regret I end my search for the magic "alternative" answer that has brought relief for several dogs on the Epil-K9 List. I have tried each and every one of them with high hopes but the seizures continue unabated and to some degree much worse as they are more frequent. I will keep Emma on the Chinese Herbs as they seem to help with the length of the seizure and the recovery, as does the Rescue Remedy, I will continue with the Vitamin B complex and the Milk Thistle to keep liver damage at bay. I will discontinue the Progesterone in Vitamin E and the Zinc and the DMG. I'm not sure what to do about the other supplements, I'll probably discontinue those. I will however continue her homecooked diet. I feel very sad about all of this, I wanted so much for it to work, but I have to think of Emma's health and do whats best for her, the more seizures she has the more she will have, it's that simple. It will take about 45 days for the right level of Potassium Bromide to accumulate in her blood for now I have raised the phenobarbital to 210mgs bid, cross your paws for us this works .
We also made the decision several weeks ago to stop using Heart Guard Plus the once a month heart worm preventative. We are now using Nemacide a daily pill which is believed to be safer for use with seizuring dogs.
Finally I have good news. Emma has now gone 17 days without a seizure since putting her back on Potassium Bromide. I have started to lower the very high dose of Phenobarbital, 30 mgs at a time. She is now on 180mgs twice a day. In a little while I will lower the dose again and try and get her down to 120mgs twice a day or even lower. She seems fine, however it will be several weeks before we can have the blood levels checked to see if we have attained a theraputic level of Potassium Bromide in the blood.
Emma is still doing well. She had one seizure 10 days ago but she has now been on KBr for 6 1/2 weeks and that has been the only episode so far. I will reduce the pheno at the weekend by 30mgs down to 310mgs a day from 360mgs a day. So far there is no ataxia, and no other side effects. This is the first time in a long while that I can relax and not worry quite so much. Boy does it feel good :-)
Dr Jean Dodds tested Emma's thyroid level and found it to be low normal, she recommended that we add .3mgs of Soloxine to Emma's medication regime. There is evidence to believe that low thyroid can cause seizures. Several dogs on the Epil-K9 list have stopped seizing after been diagnosed with low thyroid and put on soloxine.
Emma had a small seizure two days ago however it was very mild and short, this time she went 4 weeks without one. I have just returned from the DCA National Specialty where I gave a talk about Emma. During the week I heard many people discussing Epilepsy and I am hopeful that finally breeders are beginning to take this disorder seriously. I am now even more determined to continue the fight to bring this to the breeders attention. Even if the marker gene is found so that we can identify carriers, it won't help unless we have breeder co-operation. Unless you have lived with this problem no one can know how devastating it is.
Emma continues to do extremely well. For the past 3 weekends she has been off climbing mountains with Tessa and my husband and today left for a 3 day camping trip to Colorado to tackle a 14,000' mountain, in Colorado, Mt Lindsey. This will be her 5th or 6th fourteener, last year she wasn't capable of it and had to stay home because of her toxic condition,but now all that is behind her and she is fit as a fiddle. Of course all of her meds and her homecooked food went along as well. Always remember Epilepsy is NOT a death sentence, however not all dogs are able to live as full a life as Emma does.
Wonderful news Emma got to the summit of the mountain and back to camp in 9 hours of very difficult walking/climbing over lots of loose rock. On the way down a thunderstorm overtook them but not to worry Emma was fine.She loves the water and waded across the river back to the campsite. Tessa wasn't so sure but was shamed into crossing. Anyway my baby is back now and I am so very proud of her. What a change, so gentle reader never give up, no matter how bad it seems there is always a silver lining to the dark clouds. However not all dogs would be able to do this , epileptic or non epi, she has been trained from a wee one to take long walks. (so have her parents <VBG>)
It's been 3 1/12 months now since we started on Potassium Bromide and during that time Emma has only had 3 grand mal seizures. We had the blood levels checked for both Phenobarbital and for Potassium Bromide and they were both in the mid range, PB was 25 and KBr was 2.5. She is exhibiting no ataxia, and for the moment everything is great. She is currently taking 150mgs of PB twice a day and 600 mgs of KBr once a day, Milk Thistle, Vitamin B Complex, Lecithin and Borage Oil and homecooked food. She looks fabulous!!!!!
Emma seized on Saturday August 1st and again on Monday. She had her rabies vaccination on Thursday because she will be travelling with us to Canada when we take Tessa to be bred. I believe strongly that it is the result of the rabies vaccination. I am very thankful that my vet in Los Alamos has decided to stop giving the annual booster and to give them every three years as indicated by Colorado State University's Veterinary School. Their new protocol for vaccinations can be found at http://www.cvmbs.colostate.edu/vth/savp2.html
Emma continues to seize about every 4 weeks, seizures remain close to a minute in length and very little post ictal. We have noticed that she has a problem with sore paws when we are hiking on rough terrain , something that we had noticed last year when she was on KBr. I am using a product called Tuff Pad to try and harden the paw surface. Several members of Epil-K9 say that they have this problem with their dogs who are on KBr, as well as dry noses.
Emma travelled with us
to Vancouver BC, to play chaperone whilst we bred Tessa her best
buddy, to Ch.Road Partners Billie Holiday. She survived the trip
brilliantly, despite the constant changes in motels and long days
in the car. She continues to seizure once every 4-5 weeks, however
she has done so much better since April when we reintroduced KBr
in liquid form and at half the orginal dose. She will be thrilled
to be Auntie Emma again at Christmas :-)
1/3/99 Tessa and Auntie Emma kiss "Rosie"
Emma became an Auntie to 4 beautiful female pups on Christmas Eve. One week later Tessa is allowing her into the whelping box to lick the pups, I suspect that by this time next week they will be taking turns looking after them.
Emma continues to do reasonably well, she has maybe 2 seizures a month, her medication remains the same, 650mgs KBr once a day and 150mgs of PB twice a day. She loves to boss the pups around but runs away very quickly if they try to nurse from her.
Emma has been enoying the very mild winter we are having, taking every chance she can to bask outside in the sum. Unfortunately her seizures have started coming every week sometimes twice a day. I had her blood levels done for PB and KBr and they were both OK as were her bile acids and liverfunction tests. However we need better control so Dan and I decided to up the KBr by 1.cc. I have also increased the Phenobarb by 60mgs until the Kbr increase takes effect. So now at the moment her meds are 180mgs of PB bid and 910mgs of KBr per day.
I have changed all of the dogs to Solid Gold Lamb and Rice that includes the puppy Rosie as well. It is an holistic food which is almost as good as cooking for them. Both adult dogs were getting up during the night every night to relieve themselves. Since I changed from homecooking to Solid Gold this isn't happening anymore.
Em is actively engaged in helping Tessa teach Rosie the rules of the house. She will"roll" her on the floor if she starts getting too bossy, all three girls seem to enjoy each others company enormously, and they are so much fun to watch.
Emma has been seizing more and more frequently, last week it happened three times. How can this be? We have upped the KBr and the PB we should have more control . My thoughts are that the Sea Meal that I feed with the Solid Gold is too high in chloride and it is causing the KBr to be less effective. Dr William Thomas a member and veterinary advisor for Epil-K9 states:
"Chloride competes with bromide for reabsorption by the kidneys. Put simply, the kidneys can not tell the difference between bromide and chloride. An increase in chloride will cause the kidneys to reabsorb less bromide (and therefore eliminate more bromide).
There have been cases where switching the dog to a high salt (sodium chloride) diet has decreased bromide levels to the point where the seizures were no longer controlled."
Is this what is happening with Em?? Maybe? I have decided to leave out the seameal but continue to feed the Solid Gold Lamb and Rice. The Sea Meal chloride content varies from batch to batch we have been told it can vary between 1-3% . I will add Flaxseed Oil to Em's diet, it's a good source of Omega Oils and has been known to reduce seizures. I'll also try DMG again, it can't hurt.
We travelled to Utah on our annual pilgrimage to the deserts and canyons. Emma suffers from sore paws when she goes hiking, we think this is due to the KBr because when she wasn't on it,the problem went away. We have found the answer by using booties. She accepted them immediately and was very happy running and jumping on the rocky terrain. She also feels the cold so we always have her coat handy. Doesn't she make a wonderful fashion statement?????
I definitely feel the Seameal was interferring with the absorbtion rate of KBr. Since stopping it she has gone back to having one seizure every 14 or so days a big improvement. I have now added Flaxseed Oil to her diet.
Three weeks ago Emma had 3 seizures in 48 hours. They had been increasing to once a week sometimes twice but at this point I knew something needed to be done. I increased the PM KBr to the same as the AM dose 2.5cc's She now gets 1,200 mgs of KBr a day. I also had a full panel of thyroid tests done by Dodds, the results showed her to be still at "low normal" the same as she was last year at this time BUT she has been on a low supplement of Soloxine since then. On Dr Dodds (and Em's vets ) recommendation I increased the soloxine from .3mgs to .45 mgs bid (twice a day) She has now gone 24 days without an seizure!!!!!!!!!!!!!! I have lowered her dose of Pheno to 150mgs am and kept the evening dose at 180mgs. I will lower that in a couple of weeks, all being well.
Emma was featured in the August edition of Dog Fancy's article on Canine Epilepsy. She is now signing paw-o-graphs for any one who would like them. We are very proud of the article as it was an Epil-K9 member who suggested to Dog Fancy that this would be a very useful topic. Emma will be attending this years DCA as something of a celebrity :-)
Wonderful news!!!!! Emma is now over 7 weeks seizure free. We backed off the KBr by 1/2cc in the a.m. and 1/2 cc in the p.m. as she was showing signs of early toxicity, however it has made no difference so far to the now record time she has gone without a seizure. She had a wonderful time at Nationals, meeting and greeting lots of other Dals also had fun with some Dal puppies, she also wanted to say hello to all the humans she possibly could get close to. Emma has her thyroid levels checked again this week, Dr Dodds would like to see her values at high normal.
We heard from Dr Dodds and Emma's thyroid levels are indeed high normal, just where they should be for a dog her age and on medication. Finally, we seem to have stumbled upon the right mix of medications 150mgs PB bid,2cc.s of KBr bid and .45mgs of soloxine, no seizures for over 9 weeks now, no shaking or trembling, no toxicity.
Emma is now at almost 14 weeks seizure free!!!! This is a record for her. Who would have thought that increasing the soloxine would have had such a dramatic effect.
Our beautiful brown girl is now 16 1/2 weeks seizure free. On October 11th it will be 4 months without a seizure. Her meds are now Phenobarbital 120 mgs a.m 150 mgs p.m Potassium Bromide (KBr) 2cc's am and 2cc's pm, .45 soloxine ( thyroid supplement) DMG, Milk Thistle, (bid) Vitamin B Complex ( once a day) EFA's. We feed all our dals Solid Gold however Emma gets it without the Seameal. Seameal is high in Sodium and as she is on Kbr it would interfer with the absorption rate. (see an earlier entry)
Now 21 weeks seizure free!!!! On November 11th she will have made it to the 5mth mark. Meds remain the same as above. If she makes the 6 month mark I will decrease the pm dose of PB ( Phenobarbital) to 120mgs. Two other things have changed,
1) She is regaining her alpha role in the pack . She is initiating play with the 'puppy" Rosie, and will roll her on her back if she gets too rowdy with her. We have been through a difficult period with Tessa and Rosie picking on Emma during periods of intense excitement, this is now beginning to lessen.
2) For the past 2 years when we have taken Emma hiking her paws have quickly become extremely sore and she has worn booties. Recently however we have taken her on several hikes over very rough terrain without those cute booties and she has been fine, no soreness. This is one more beneficial effect of the soloxine .
To the many people who write me and ask how Emma is doing, I thank you for caring, Emma has helped so many people understand what it is like living with this dreaded condition. I am sure she will seize again one of these days, but right now we are enjoying our brown girls return to a normal life. Check back next month and see if she made it to 6 months.
I apologise to those of you who follow Emma's page. I had a mastectomy on Dec 8th and so was unable to update as promised. So YES!!! she made it to 6mths and now is 6 months plus 1 1/2 weeks seizure free. As promised I reduced her Phenobarbital to 120mgs bid half of what she was on in June. I will update in a few months. Check back later.
Em had a couple of seizures since I wrote last. One was very very small and another was bigger. I think the Phenobarbital level had dropped too low. She is back up to 150mgs bid which I'm not to happy about, but, we have to do what we have to do. Maybe I can try lowering it again soon. So we are now at 2 weeks and counting, or you could look on the bright side and say only 2 seizures in 7 1/2 mths :-)
Em had another seizure yesterday this was 5 weeks since the last one. Unfortunately the other two dals Tessa and Rosie got to her before I could and put 3 nasty puncture wounds in her upper right left leg. She was very traumatized for the day but now seems to be a bit brighter. I think this seizure may have been partly my fault, her Bile Acid tests came back on the high side which MAY mean a problem is occuring with the her liver. I had tried lowering her PB and upping the KBr, that obviously wasn't a good idea. We will do the Bile Acid test again in one month and see if the reading is still high.
Good news!!!! I had Em's Bile Acid test run last week as well as a complete blood panel and everything is normal , no liver problems, so we can breathe again. We ( my husband and I ) went on a trip to St Lucia a couple of weeks ago leaving Emma with her favorite "baby sitter" the other two girls went to a kennel . Em seized the day we left and hasn't since so she has finally broken the 14 day barrier again. Her main meds are as follows. PB 150 mgs bid -KBR 2.5cc's bid and Soloxine .45mgs.
So many things have happened to us since I last updated Emma's Story. She had a couple of seizures in April and another one on May 5th the day before we were to go on our annual vacation to the 4corners area of Utah. That day a controlled burn at Bandelier National Monument went careering out of control and forever changed life in Los Alamos . However we had no idea that this would happen as we set off the next day. If you are interested in what happened to us whilst camping and what happened to Los Alamos with the Cerro Grande Fire please visit http://www.rt66.com/~dalcrazy/CerroGrande.html
When we eventually were able to return to Los Alamos after the fire, Emma had two seizures in two days. We presume this was stress and the smoke in the air. At the moment she is 3 weeks seizure free.
Em seized 2 days ago, the same time as usual within an hour of breakfast. We didn't get to her in time and the other two dals chewed her up. She ended up with wounds in her head, neck and left upper arm. I know that for many dogs this is normal primative behaviour , survival of the fittest, but it is terrible to have to deal with. I think one of them will shortly be wearing a muzzle at least that would help.
Em has had several seizures since I last wrote. In my endless quest to find the 'magic bullet" I have decided to feed all the girls a raw diet known as BARF ( Biologically Appropriate Raw Diet or Bones and Raw Food) ) based on Dr Ian Billinghust's work. Since Emma seizes 99% of the time within an hour after the morning meal, it is my thinking that something in the kibble might be the trigger. At the moment I am working slowly, incorporating raw in with the Solid Gold kibble, raw chicken wings, ground raw chicken wings and pulped veggies, eggs and yogurt. Grains will eventually go altogether.
So far so good Em is now almost 5 weeks seizure free. However changing from Solid Gold to almost all raw, is causing the KBr to work too well and is resulting in some ataxia ( weakness in the rear limbs and unsteadiness). This is because the sodium chloride in the kibble is no longer competing with the Bromide for reabsorption in the kidney, thus making the Potassium Bromide much more effective. Raw food has no added sodium chloride (salt) I have backed off on the KBr dose by 1cc to 2ccs AM and PM and will see if this is enough to make a difference. According to Billinghurst in his book "Give a Dog a Bone" the taurine in the raw chicken /bone has been proven to be very beneficial for epileptic canines. So here's hoping..........
Em is now over 6 weeks seizure free. We haven't had such a good streak since last year when she went 6 1/2 months. The ataxia ceased and she was together enough to do a couple of climbs last week of 2000' vertical feet in the Colorado mountains. Another big plus with the new diet is NO GAS!!!! Emma was the Gas Queen par extraordinaire. All three girls look great, I am thrilled with what I am seeing. In two weeks time all grains and therefore all kibble will be omitted from their diet.
For those of you waiting to see if this diet works for Emma the answer is a BIG YES!!!! She is now 9 weeks seizure free!!!!!!! You have no idea the joy this brings us all. No more being attacked by the other two girls , no more dazed Emma trying to get a fix on her whereabouts. I will write up her exact diet and put it on this page so that everyone can see exactly what has helped make this remarkable thing happen.
Em got to 11 weeks seizure free and then she broke her winning streak, however she is now once again three weeks seizure free so it's obvious the diet is working. Since starting the diet 14 weeks ago she has had one seizure now thats pretty good as far as we are concerned.
Here is the diet we feed to Emma and also Tessa and Rosie. Our Spotted Girls Diet
Great news it is now 9 weeks since the last seizure and 20 weeks since starting this diet and only 1 seizure during all this time!!!!! Emma is not alone, we have quite a few dogs on Epil-K9 who are also having great success.
I have also discovered that a penlight laser held close to the skin for 30 seconds once or twice a day will heal up hotspots and lick sores. I have tried this on two of my dogs and it works!!!!
For all of Emma's fans she is still seizure free!!!!! We have been feeding the BARF ( raw diet) to all three girls since July 1st. Emma has now been on it over 5 months and she has just has just had the one seizure at 11 weeks, into the diet. At present she is now 15 weeks seizure free. I am not reducing the meds yet. On Epil-K9 we have dogs who have had their meds decreased after 6 months only to start seizing again . I believe it is a combination of the medications and the diet that are keeping my baby so healthy. No matter what Emma has epilepsy ( inherited, as we know that she had 2 siblings who also seized) the diet is helping her lead a normal life along with the medications. Maybe one day I will pluckup the courage, however her liver function tests are still OK ........
I finally plucked up courage and have started the long process of lowering Emma's Phenobarbital. She is still seizure free ( since the first week in September) so we thought it was time to start. We have lowered her dose to 120ms of PB in the AM and keeping the evening dose at 150mgs for another 4 months and then will re-evaluate the situation. Who would have thought that just changing the diet could bring about such a radical change, it just goes to proove, you are what you eat!!!
Emma contiues to amaze all of us including her vets, Dan and Bob. It's now over a month since we lowered the Pheno by 30 mgs and also the soloxine ( thyroid supplement ) by 1/2 pill twice a day. at the end of February she will be 6 months seizure free!!!!! and 8 months on the BARF diet.
Emma made it to 6 months seizure free !!! a miracle. We lowered the PB again so her meds are now 120mgs of PB bid .3mgs soloxine bid and 2.00ccs of KBr bid.
I am going to show her in the Veterans class at DCA this year and we are going back to therapy dog work in April.
Emma had a small seizure with an almost instant recovery on March 11th. However that still means only 2 seizures in 9 months on the raw diet. We all went camping in our RV to S. Arizona and she and the other two girls had a blast. Sore paws were a problem however with booties on she was fine . Here she is zonked out after a long hike.
One more seizure occured two weeks ago however we feel blessed as this is still only 3 seizures in almost a year. Previously it was at least once a week sometimes more. Please check the Epil-K9 website http://www.canine-epilepsy.com for some nuts and bolts information on why a natural diet is effective for seizures and allergies.
Em showed brilliantly at DCA and was a terrific ambassador for canine epilepsy. She just loved visiting everyone and introducing herself.
She had a 5 second seizure a month ago #5 in 13 months. A wonderful accomplishment
Things are still going well 5 seizures in 15 months. Not much to write about these days, but, it's a case of no news is good news :-)
Em is now 8 months seizure free , just 5 seizures in 20 months since she started the BARF diet. All of the people who said it would never work now don't know what to say. Em's meds are reduced by almost half, she is a happy healthy young lady who will be 9 at the end of April.
Em is now 10 months seizure free. medications have been reduced by 60%!! She had a rabies vaccination a week ago and for the first time has not had a seizure. Her immune system must now be strong enough to withstand the vaccination.
Em is now 11 months seizure free . We are getting ready to leave for a 5 week vacation in the Pacific North West and Canada. The raw diet will be continued for all three dogs as far as possible but for Emma there is no choice we will make sure she gets her raw chicken and veggies. So check back in August and hopefully we wil have good news .!!
Finally I am updating, sorry it has been so long for those of you who are "Emma fans" We had a wonderful 5 weeks driving out to the coast of Oregon, through Washigton to Vancouver Island.
Emma loved investigating the shore
We visited Heidi and Jona who live on Vancouver Island . Jona also has epilepsy. The two girls got on very well and loved swimming in the lakes.
After a a few days we moved on to the mainland of Canada staying at Whistler and then on to Revelstoke where Emma and the girls and fun playing in the snow. We visited Banff , and the Icefields Parkway and of course did a lot of hiking. Then on to Glacier, Yellowstone , Grand Tetons and home
We were home for just over a week when we decided to take off again, this time to Colorado for a few days. We did two great hikes the last one we climbed Mt Sheridan which is 13,790' high. Emma took off about 200' from the top and was the first to arrive at the summit. She must have remembered thather job used to be leading the pack during a climb.
Emma is now 13 1/2 months seizure free all due to the raw diet. She has developed a heart murmur which apparently is in the "family". Her cardiologist recommended adding 500mgsTaurine, bid, Hawthorn and CQ 10, also exercise was recommended so she doesn't have to cut back on her new found job :-)
I will update in a couple of months
Well I had to come back a little earlier than I had hoped. Emma had a very small seizure on September 4th she was just a few days short of 14 months seizure free. It lasted about 30 seconds and she had almost instant recovery . I had aways worried what would happen when she did seize as many of our Epil-K9 dogs have had very bad seizures after going a long time without one, so we feel very lucky . She is doing just fine hardly broke her stride and went on a long hike last week
Sorry there has been no update for so long . All is well in fact better than well. Emma finished out the year 2002 with just the one seizure pretty amazing for a dog that used to seize at least once a week. So the stats are now 6 tiny seizures in 2 1/2 years . Medications are now 60mgs of PB AM, 90mgs PM , KBr 1.cc Am and PM , Soloxine .3mgs AM & PM and of course all of the supplements noted on the Diet page Our Spotted Girls Diet.
Emma's sense of smell has returned since lowering the medications, she now sniffs every blade of grass on her walks, such a small thing but so wonderful to see.
My work with seizing dogs continues on the Epil-K9 list and as web mistress for the website http://www.canine-epilepsy.com and of course with the DCA as the Director of the DCA Seizure Study Group.
I can't believe it's been so long since I updated Emma's journal. Em had a seizure at the end of February the day after she had a Bordatella intranasal vaccination and a couple of Iams cookies at the vets. It was probably a coincidence but she has been fine ever since . She has a new playmate Janie a feisty calico kitten . Janie comes camping with us in our trailer and loves to snuggle with Emma in the evening. We will be leaving next week for 2-3 week trip up to Wyoming , Idaho , Montana etc.
I am now feeding our cats Lucy ( who is 15) and Janie who is now 3 months old a raw diet as well as all three dogs. They are alldoing fantastically well on it. It makes for a lot of work but it's worth it to see how healthy everyone is.
Well people who follow this journal must realize that no news is good news and indeed it is. Emma has not seized since the end of February 2003. She did give us a scare in November. She developed a lump on the back of her neck which looked very suspicious. Shayna our new vet (as of last July ) removed it with a local. Emma just stood ther very calm and let her do it .. amazing. Anyway afer several agonizing days the report came back negative . Whew she had us all very worried !!
We had several wonderful camping trips and as usual Emma loved them.
The only negative thing was that Janie our new kittie developed epilepsy in August !!!! I think I must have a sign on my forehead , "epileptic animals please apply here "!! It took her a while to stablize but she is doing well now on Phenobarbital and Potassium Bromide. Her litter sister started seizing at 6 weeks after her first shots and is now partially blind so I guess we are lucky.
So thats about it. I must get some new photos for the journal
Check back in a few months, oh and of course Emma is still on the raw diet and we have reduced her medications once again.
Well sorry it took a lot longer a lot longer than a few months. Emma almost made it 2 years without a seizure but we think she broke her all time winning streak a couple of days after Christmas 2004 . She was being boarded in her usual kennel and they found her wandering around in what we believe to be a post ictal state . Since it had been so long since a seizure I had forgotten to take the Rescue Remedy to the kennel . They did contact us and I told them what to do and she came out of it just fine. So she is now 5 months seizure free again.Her meds are 30mgs of Phenobarbital twice a day and 1cc of KBr twice a day a far cry from when we first started the BARF diet.
Well no news in this case is definitely good news. Emma had one seizure last year in Ocotober of 2005. So far this year none !!. She reached the young age of 13 on April 28 2006. In March we took a vacation and came back to find our house sitter very worried about Em as sudden very bad hind end weakness. Xrays showed nothing wrong in fact her hips and spine are in wonderful condition. David feels that somewhere hiden from view is a pinched nerve. He put her on a relatively new pain killer Zubrin and she made a rapid recovery. I still give it to her every other day, or every day when we are hiking. In June we went to Colorado hiking and she did wonderfully well, better than me actually :-) We only managed to do about 5 miles a day ( I am in the middle of having both knees replaced for a second time) but Emma had no problems and wasn't even stiff after we got back to the traveltrailer. She handled snow banks with no problem, truly remarkable for her age and what she has been through. I know that one day in the next couple of years I will have to say good bye, so each day is a gift.
Emma loves water and jumps into every puddle, stream and lake .
Between 8 & 9pm on Tuesday March 20th we let Emma out to potty in our front yard which is gated, walled and fanced. The front gate was closed. A while later we went to get her in and she had vanished. The gate was still closed. We hunted high and low in the house around the house .. nothing. The next day we asked the mountain canine corps to search the canyons and areas around our house, people went out on horseback,we called Animal Control, posters were made and put in highly visible places. There have been no sightings, it is as if she never exisited . One person reported seeing coyotes pulling a dog into one of the canyons nearby and we presume this was her fate. We are heartbroken she meant the world to us. She would have been 14 on April 28th. Someone knowingly opened the gate and then closed it again.
Emma's story has at last come to an end. We will never forget you dearest Emma.
There is a Emma Memorial Fund being set up at North Carolina State University Veterinary School. Why this institution ? The Epil-K9 Foundation Inc has been helping fund several small but important research projects. Emma's light will continue to shine,she may be gone physically but her spirit will live on.
For details of the fund set up at NCSU go to http://www.canine-epilepsy.com/EmmasFund.htm
Please visit the Epil-K9 WWW site it is packed with information about every aspect of Canine Epilepsy
If you have any questions regarding canine epilepsy please email Marion firstname.lastname@example.org
There is an All Breed Epilepsy Support List on the internet which I co-own. It provides a wealth of information. as well as support from the 900 + members and several vets.
To join, send an e-mail to LISTSERV@APPLE.EASE.LSOFT.COM with a blank subject header and the following in the body of the message
SUBSCRIBE EPIL-K9 (first name and last name) You will receive a welcome letter and instructions on posting.