Owner's Stories

Members of the Dutch e-maillist Spike's Disease (CECS) are telling their story

Kim, Bo en Britt

Kim

In 1985 the first border came into our lives, her name was Kim and it was love at first sight! She came into heat for the first time when she was 5 months old and had her first fit 10 days later. It was a severe episode, two in a row with only a few minutes between them.

During the first two years she only had fits during her heat. Because of this we decided it might be better to have her spayed. But, alas, this did not come true: the episodes occurred even more often then before her operation! Medicine for epilepsy was prescribed but it didn't help. Kim showed all the symptoms of what we now call Spike's Disease (CECS).
Kim's episodes looked like those shown in the videos, but Kim's were much more severe. During an episode she locked her jaws and often bit her tongue which would cause severe bleeding from her mouth. She locked her jaws THAT strong it was impossible open her mouth. Kim wasn't alert during an episode. Her eyes were dull and her pupils enlarged. During an episode she made squeaky noises, never lost urine , sometimes she vomited bile afterwards.
I always knew some days before, Kim was going to have an episode. There would be discharge from her left ear and I think she already had pain full jaws (or head) because she had difficulty with eating and the day before the episode she wouldn't eat at all. When the episode started she always came to me; asking for help. She was so scared.....
Then there was the meningitis: she had antibiotics for that and she recovered. During the last years of her life Kim showed odd behaviour: she shivered and squeaked all day long and hallucinated. She became aggressive towards other dogs, she wounded herself, became incontinent, often vomited, almost always had bloody diarrhoea .....
March 26, 1995, we had to let her go...

Bo

Our second Border Bo; was born November 16th, 1986. She seemed to be very healthy. She was very sweet natured and had her first litter at the age of 3 and her second litter at the age of 4. Everything seemed to be okay....... until 1992. The first time that Bo had a fit we thought that she had been poisoned. It started during a bedtime walk; the cramps were far more severe than the ones Kim -her half sister- had. Bo threw herself backwards with enormous strength and we had to take care that she did not hurt herself. For several days after such an episode she would suffer from pain all over her body and she would be very absent-minded. We often needed to give her painkillers and lots of rest; otherwise she would get another episode. The vet prescribed Phenobarbital, but that didn't work. Then we gave her Mysolyne (Primidon) which worked better than we had expected! The cramps didn't come that often afterwards and even stopped when we started her on senior food. It was a nerve wracking experience for us: despite of her cramps Bo reached the age of 15 years, and died October 23- 2001, suffering from Cushing's disease.

I hardly need to tell you how miserable we felt; when it became clear 8 of Bo's 11 children were also suffering from cramps. Just like the sire of the second litter, Bor, who also brought the cramping into litters of bitches from other bloodlines.

At the age of 12; in one weeks time; one of Bo's cramping children started to have a lot of very severe episodes. It looked like she couldn't come out of it. They went to visit the vet immediately. The vet tried to stop the episodes with Valium but it didn't work. After this Valium and similar medicine were injected; but nothing seemed to help. The dog's condition became worse. She squeaked and screamed from cramping, fear and pain. She was bleeding from ears, eyes and mouth, vomited bile, foam and blood and had bloody diarrhoea; the situation became that bad the owners had no other choice than to let her go.....

Britt

Britt was born on September 12th, 1990.
She is our Bo's daughter. Right from the beginning Britt was always sick. Often vomiting, often slimy bloody diarrhoea, terrible stomach/intestines cramps and a few cramping episodes; soon it became clear Britt was suffering from the same ailment as our other Border Terriers suffered from... later known as Spike's Disease (CECS) Britt often suffered from inflammation of the ears, eyes and anal sacs, hotspots and eczema. She had lots of tartar on her teeth, there came an awful odour from her mouth, her saliva had the texture of glue. Because of this, she had to swallow and lick the whole day, to get rid of it from her throat. She also developed lip fold eczema. At a very young age she already had problems when she was in heat; she bled very little but smelled always very attractive to males. She came into heat too frequent, sometimes four or five times per year. Inflammation of the uterus was the diagnosis and for that she was prescribed antibiotics.
It only helped for a short time, then the misery would start all over again. Two times, with short intervals, she got pneumonia, the recovery took a very long time. Her other complaints became more severe. At the age of seven she suddenly couldn't get enough air, she started to cough and her head and body were swollen.
The first blood tests showed nothing abnormal and she was prescribed Prednisolon, but the complaints worsened and new tests were done. Acute leukaemia was the outcome with no chance on recovery. With this outcome in mind I stopped giving her medicine and let her do everything she wanted and still could do so the rest of her short life would be as pleasant as it could be. Because of her bad appetite she was allowed to eat what she liked- no longer Royal Canin - but the senior food of Eukanuba that her mother Bo ate- she liked best.... (later we learned other cramping dogs did well on a senior food too because those diets are most of the time gluten free). Strangely she recovered after I stopped giving her the medicine and the change of food . We did a complete blood work and physical again. The results were THAT good we decided to tackle some of her other ailments: the ear problems and the chronic inflammation of the anal sacs.
Both were rinsed under anaesthetics once in the two weeks. Her teeth were cleaned little by little. Later this all was repeated once in the three months. This way we could control her problems . The first time her ears were rinsed it became clear her eardrums were perforated. This was caused by the chronic inflammation. Because of the problems with her heat it would be better she was castrated, but our vet didn't want to take the risk because a heavier anaesthetics was needed and because of the difficulty with breathing and the swelling for which still was no explanation. She got lumps in her breasts. First some small lumps were removed but soon more tumours developed and her left side milk glands were removed, later more milk glands were removed from her right side Eventually at the age of eleven her uterus problems became THAT severe we had no other choice; she HAD to be operated. The vet used special anaesthetics and had extra help during the operation, luckily she came through all this ok, even if she took some time coming round from the anaesthetics. Her uterus and ovaries were almost black and full with cysts. Shortly after her uterus operation we switched her from the senior food to a ready made raw food: Energique no. 4. It is almost not to define what happened, but from that time on; she became a lively dog, playfully, naughty , who ate her food with taste and could run and play with the others. She hardly vomited anymore and the cramps in her intestines and blood diarrhoea were almost a thing from the past. Almost...and even complete when we discovered Britt didn't tolerate grains and rice. From that time on I am preparing her food myself ; without grains; only meat, bones and vegetables.
When I left out the grains from her food, gradually all her complaints disappeared. No more eczema, no more abdomen complaints, no more episodes, no ear -, eye problems anymore...........Britt became an old dog, but felt (and feels) much better then in all those years before..........
At the age of 14 she was diagnosed with kidney failure, but this is also controlled with diet. I prepare it myself; Because of her other problems it is not entirely raw but partly cooked; because she doesn't tolerate large quantities of vegetables. With the necessary care, she is doing very well, September 12th 2005 we even could celebrate her 15th birthday...... The past years Britt hasn't been vaccinated anymore, no de worming and no flea control.

Despite all those terrible experiences with the health of our dogs it didn't put me off, Border Terriers are my passion, I can't live without them. March 2001 I went to England to get a Border puppy. She was everything we could wish for: As healthy as we hadn't seen before with a lovely enthusiastic character. One and a half year later two other Border Terriers, from the same breeder, came to live with us and I had the courage to breed with these dogs. Two litters were born in 2003 two pups stayed with us. At this moment there are 6 Border Terriers living in our house. Such a wealth......

Despite the improvement in Britt's cramping condition, due to the grain free raw food, the last months of her life her overal condition gradually grew worse. Two ailments were too much for her old frail body.
In the end kidney failure made her sick more and more often and was also responsible for further decline of her old frail body.
Sunday January 8 2006, I had to make the decision to put Britt to sleep at the age of 15 years and 4 months.

Karin Nijland

Britt 12 - 09 - 1990 / 08 - 01 - 2006
Click HERE for a last Goodbye to Britt.

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Remi

Hi, my name is Remi and I am a Border Terrier.
I was born in 1995. I was a lovely healthy puppy. November 1996 I got ill, I got bloody diarrhoea and I had to vomit. The vet prescribed antibiotics but it didn't help. I grew skinny and my human worried a lot about my condition. The vet prescribed a diet food and my condition seemed to improve. Spring 1997 while we were visiting my human's family in the north of the Netherlands I got an episode. The vet over there thought it was epilepsy. Next day we went to our own vet, he couldn't confirm the other vet's diagnose. About two months later I had another episode, I was sitting close by my human when it started so she could see exactly what happened to me. I crampt, almost couldn't walk, I sailed through the living room and fell behind the central heating. My human told me afterwards my eyes were huge and I was alert but very scared. I also lost urine and vomited. We visited the vet again, he was certain I was suffering from epilepsy and Phenobarbital was prescribed. I kept having these episodes with regular intervals. My episodes varied in severity; sometimes I recovered in one hour other times it took me a whole day. When I was 4 years old I was spayed, the vet thought it would help to improve my condition. Alas the episodes kept coming. My human didn't like it at all I had to swallow medicine for the rest of my life. By talking about my condition with other people my human came in contact with Joke. They exchanged experiences. This has helped my human and me a lot. My human thinks it is especially food that has been a breakthrough. At that time I had been eating fresh meat and vegetables for years, but I still was fed grains. From the time Karin and Joke are recommending a gluten free diet my condition has improved a great deal more. My human is baking me gluten free bread and I am eating fresh raw meat with vegetables. May 2005 I had my last episode. For my age I am still very active and I am planning to get very old. I almost forgot to tell you, I haven't been vaccinated for a long time now, I don't get any medicin and my human doesn't de worm me or treats me with flea repellents.

Kind Regards, Remi and her human Mery

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Cindy

On Saturday, December 29th., 2001 she had a strange fit. Her behaviour had been quite normal that day. The episode started in the evening at about 6 o'clock. I had put her food in her feeding bowl when she started to act very strangely. It looked like her legs couldn't carry her anymore ..... I kept contact with her through the whole episode, no foam at the mouth. She managed to reach her feeding bowl with great trouble, it was a pitiful sight. She ate her dinner and was quite normal again after that . The whole fit lasted about 3 minutes,
it was a terrible fright! We took her to the vet to have her checked, her blood was examined, that was ok, heart and lungs were ok, too. The vet thought it possible she had had a mild epileptic seizure. We'll have to wait and see if it happens again. Until now I am happy to say it hasn't ..... We informed her breeder who told us there were no other dogs from the same litter or other litters with these fits. I mailed my story to the local Border Terrier List and got several suggestions what might have been the cause of the fit: 1. vaccination (she had been vaccinated 19 days before), 2. hypoglycaemia (she is an active dog). The fit looked a little bit like 'mad cows' disease.

In the early hours of the night, Cindy had her second fit. I'm so scared! It was a short fit, it lasted about one minute.

Friday evening, Cindy went with us to the fair in our town. Cindy likes that! When we came home, Cindy went to sleep in her basket. Around midnight I heard her fall down. I went looking and saw she was trying to stand up again but her legs couldn't carry her weight anymore and she fell down again :-( I lifted her. She was shaking over her whole body! She was alert, but drowsy....... After a minute she was normal again.......

It had been a busy Friday: in the morning Cindy went with me to visit my mother, she didn't have time to take a nap....In the afternoon she neither had time enough to

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Hugo

Hugo was born March 2001. Hugo came to live with us when he was 8 weeks old; a very lively puppy, cheerful, playful, a real cutie. The breeder gave me Royal Canin + a puppy parcel containing amongst other things: chewees, a toy and a piece of cloth with the litter smell. Food advice: porridge for breakfast and kibble for the other meals. Hugo was fed four meals per day.
Hugo was about 6 months old when he started to vomit his food about 4 hours after he had eaten it. I changed to another brand but he kept vomiting his food (I tried 5 brands with all the same result). Time to visit the vet. The vet advised an hypoallergenic kibble and Hugo's condition 'improved'. But I wasn't satisfied with the result. Hugo didn't like his new food and he still often suffered from intestinal complaints: diarrhoea, often mixed with blood, feeling sick. The happy play full dog had almost completely vanished.
One day while I was surfing the internet, I discovered the Dutch Border Terrier Message Board where I read the messages and information of Joke Miedema. This way I heard about Spike's Disease (CECS) and learned a lot about food. I decided to start feeding Hugo a ready made raw gluten free dog food. After changing to this raw food and leaving out all gluten Hugo's condition improved. I am convinced gluten were the cause of Hugo's problems. He still can have an occasionally bellyache, because he sometimes succeeds in eating something from the street, but most of the time he is ok. I stopped using repellents like frontline and I only de worm him once per year. I still vaccinate him, because we live in an area with many dogs and I am scared he will get sick. I don't think Hugo is a 'real' cramping dog but I am sure he is a dog with a gluten allergy.

Kind regards, Willemien and Hugo.

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Amber

Amber was born February 11th, 2003.
Her health problems started October 2003. One day she started squeaking and salivating. Next day we visited the vet who told me Amber suffered from a severe inflammation of the uterus. She had to be castrated right away. The day after her operation she was still squeaking and drooling so we went back to the vet. She got her first episode on the vet's examination table. She started to salivate, became stiff and fell down. The next couple of days she salivated a lot and had more episodes. Five days after her operation, she had three episodes at night, we went to the vet immediately. In the vet's practice she had two more episodes. The last episode didn't stop. The vet gave her: Phenobarbital, Diazepam, Dormicum, Methadon and Rapinovet which didn't stop the episode. In the end the vet had to bring her under anaesthetics because her condition grew worse. She showed wild uncontrolled movements and she screamed on and on at the top of her voice. Every medicine the vet gave her seemed to make her condition worse in stead of better. The vet told me he never ever had seen this before! After several times of trying the vet succeeded to wake her without her getting another episode. After this she was examined but they couldn't find a reason for those episodes. They thought it could have been meningitis; bacteria from her inflammated uterus travelling to her brain. She was prescribed Prednisolon for this.
Alas after two months she started having episodes again. January 2004 Amber was examined by a specialist for internal diseases, she told me Amber suffered from epilepsy. But in a slightly different form! Because Amber doesn't tolerate Phenobarbital they didn't want to give her Epitard either. She was prescribed Kalium Bromide. But the episodes kept coming. She usually had one or more episodes once in the 5-6 days. Her episodes are short; 1-2 minutes. When an episode starts she is making snivelling noises, she isn't responding to anything, next she cramps and keels over and she is making paddling movements with her feet. After this she gets up and is very hungry and restless for about an hour. At the end 2004 somebody told me about Spike's Disease. I had read about this condition before but my vet and the specialist diagnosed Amber with epilepsy. I decided to start feeding Amber the same way dogs suffering from Spike's Disease are fed. December 2004 I started to feed her a gluten free raw ready made food. Before this she was fed Royal Canin and later VetConcept. From the moment I changed her diet to gluten free raw, her condition has improved dramatically. She had very few episodes: one at the end of February, March and April. At the moment she hasn't had an episode for 28 weeks!! Even the bouts of diarrhoea she often suffered from before, have disappeared completely. The supplements I give to Amber are fish oil, vit B and Melatonine. I took Amber off her medication, stopped vaccinating and de worming her and I also stopped using repellents.

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Banjer

Hi,
Let me introduce myself. My name is Banjer and like you can see in the photo I am not a Border Terrier but a mix between a Dachshund and.......nobody knows. My mother once went out for the night and some weeks later I was born! What am I doing at this site? Let me explain. When I was 16 months old I got my first episode. It was August 27th 2002. More episodes followed and in November I had one episode per week. They decided it was time for medication. They prescribed Phenobarbital. All went well till Mai 26th 2003; when I started to have episodes again. The vet made an house call and treated me with diazepam. It took me one hour and twenty minutes to come round. The vet prescribed an higher doses Phenobarbital and diazepam; but medication didn't help a lot: my episodes still occurred once per month. It was amazing I was back to normal almost at once after an episode. We decided to visit a specialist. The specialist prescribed Kalium Bromide and Phenobarbital. My episodes became shorter -from 10 to 5 minutes- but they didn't go away; even when they heightened my medication. After this I got some episodes that wouldn't stop.
One night my human saw a film on TV about people with epilepsy; they were on the Ketonic diet which improved their condition. My human asked my specialist if a diet could help me. The specialist told my human to take a look at the site 'Spike's Disease'. May 11th 2005 was the first day I was fed my new ready made raw gluten free food. My human is taking care I don't get anything with gluten, lactosis, yeast, corn and soy inside me. May 14th I had a little episode; but it was the day my human treated me with Frontline which was probably the trigger. June 3rd 2005 I got vaccinated; four and an half hours later I had an episode. Coincidence? September 12th I managed to eat my bellyful with cat food at my dog sitter's house. Two days later I had an episode.
The gluten free raw diet is working wonders. I have never been THIS long without episodes and the last episodes could all be explained. We are very glad with this diet!!

Greetings from Banjer and my human Miranda

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A member of the international Spikes-Disease-CECS-Support-Group tells her story

Caddy

Caddy is a three and a half year old Border Terrier bitch who had her first cramping fit in July of this year (2005). Not knowing what we were witnessing, we called the vet out who thought it may be an epileptic fit. Only with some research and help from fellow owners did it become clear that Caddy had suffered from CECS. Taking advice, we removed all gluten from her diet (and from that of her daughter, Tawny) and she was no longer allowed rawhide chew sticks. We kept her on her Nutro (kibble) food, which was already wheat gluten free. Since this point she has had no further episodes (at least those we have witnessed). She continues to have injections as normal and receives standard worming and we also use Frontline for flea prevention. I am glad to say that the advice we received was positive and helped us (and our vet) to understand what was happening and, therefore, avoid unnecessary epileptic drugs, which would clearly have been useless.
The entire case was an education for us, the breeder from whom we gained the bitch and also for our vet.
Thank you Joke.

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