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post #1 of 191 (permalink) Old 01-14-2015, 12:48 PM Thread Starter
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Kai's Story

I wasn't expecting to return to GRF in this manner after losing both my boys so suddenly almost 3 years ago. However to my shock and sadness, my happy, gentle but clumsy 2 year old gorgeous Kai has started having seizures.

It started in the early hours of my birthday morning in December 2014, when I was woken in the very early hours by a very loud banging noise, I thought someone was attempting to enter my property. How wrong I was :-(

Kai was in the middle of a grand mal seizure. I was shocked, to say the least. If it hadn't been for my nurse training I'm sure I would have freaked out. Obviously later that day I took him for assessment to the vets. She said it could just be a one off episode, or progress to full epilepsy. Basically she advised it was wait and see. She did give me some rectal Diazepam for emergency situations.

It was two weeks on Christmas Eve Kai had another seizure. This time it wasn't as long and he recovered much quicker. Then again on Christmas Day morning he had another, much the same as the previous day. I administered Diazepam to hopefully curtail any further episodes. I was very poorly myself at this time with a very nasty virus, with high temperatures and a flu like illness. So we were poorly together.

We returned to the vet the day after Boxing Day. This time she prescribed the new anti-epileptic medication Pexion. Thankfully for next week we were seizure free. However the second week Kai started with what I believe were partial seizures only lasting a few seconds and only involving the head. Although they were partial, Kai suffered at least two to three every day and they really frightened him. At the end of that second week in the early hours of Sunday morning he suffered another grand mal seizure. Rectal Diazepam was administered with further oral Diazepam to calm him down as he was very aggitated.

I therefore spoke to the vet the day after and she informed me she thought it wise to commence Phenobarbitone. When I arrived she said she had spoken to the Neurologist at Royal Liverpool Animal Hospital, who had suggested the Pheno plus other investigations. Therefore Monday evening he was given Pheno along with the Pexion.

Tuesday Kai was admitted to the vet practice for his investigations. I collected him later that day and thankfully Kai had a seizure free evening.

Wednesday today, Kai has definately began to suffer the effects of the Pheno ie., ataxia, thirst, and appetite. This morning he was finding it very difficult to stand and as expected very wobbly. The vet had given him a loading dose, and I was expected to continue this, though because of his very unsteady gait I omitted the morning dose of Pheno, but still give him the Pexion.

Kai remained unsteady on rising to his feet during the day, but wasn't too bad once he got up walking. I thought it was important to maintain his exercise (as he is usually off lead running in the woods and fields). I kept him on lead and road walked him close to home just in case.

I spoke to the vet again this afternoon and told her I had not given him the Pheno this morning due to his unsteady gait. She advised that as the Pheno seems to have put a halt to the seizures, to continue with the Pheno at a reduced dose. She reported that the acid bile test has been reported as normal, and we will get the results of the other tests in a few days.

So guys, that it for now. I'm thoroughly exhausted being constantly awake waiting for the next episode and I'm also now on my second lot of antibiotics and an inhaler !! So for the moment we are both suffering.

It's early evening now and Kai is sleeping which is the worse time as this is when the seizures occur. I'm praying that my little boy can gain control over this horrible illness.

The people of GRF were so incredibly kind to me when my boys passed and there isn't a day goes by when I'm not thinking of my boys and how I was helped by you all. I just hope Fluke and Harry will keep an eye on Kai. He is the sweetest young dog, not a bad bone in his body. He welcomes everyone, both four and two legged, no matter how they are with him. He has helped me heal from the devastation of losing my Fluke and Harry. I just pray we can control his suffering and he maintains a good quality of life.

Last edited by maggsd; 01-14-2015 at 01:15 PM. Reason: To add photo
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post #2 of 191 (permalink) Old 01-15-2015, 04:58 PM
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I am so sorry. It sounds as though you are going through hell. You know what they say, "When you are going through hell keep going!"

Please know that as hard as it is you are on the right path.
The seizures are incredibly stressful to witness but so are the effects of Pheno. The good news is that within a few weeks Kai should be able to adjust to it and it should reduce or hopefully in your case eliminate the seizures.

The more seizures a dog has the more easily others come through so it is important to put a stop to them now. Try to get an appointment with a neurologist as sadly I have found that many vets don't really know how to handle seizures properly.

Keep an eye out for any patterns or triggers including the ingredients of treats or any chemicals that he could be exposed to.

Our hearts go out to you at this very tough time and I hope that this transition phase passes super quickly! Wishing you both the best of health and happiness

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post #3 of 191 (permalink) Old 01-15-2015, 10:54 PM Thread Starter
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Help !!!!

Firstly thank you Doug, so very much for your support. I feel so alone, in fact I am alone ! Thank you thank you.
It was the neurologist who suggested the Pheno and other tests, so I am thankful my vet has been in touch with them. I sort of feel you are right about vets not knowing everything. I had read about this 'bile acid test' and was surprised that it took the neurologist to suggest it. I has read about thyroid problems causing seizures, but when I mentioned this to the vet, she dismissed it, saying he didn't have any symptoms for thyroid troubles.
The reduced dose gave him even more pronounced side effects, he couldn't stand and became extremely distressed it was obvious he couldn't understand what was happening to him.
So again the following morning I didn't give him the Pheno but later that day I spoke to the vet again and she wasn't happy I had withheld the Pheno, she said he must continue with it as stopping could bring on a major fit and to reduce the dose even further. She scared me so I gave him the Pheno again last night. He seemed to tolerate this but within an hour or so, I can't be 100% sure, but I think he almost had a partial as his head started to stretch. You can imagine I felt so bad I had not followed her advice, but she hadn't seen him with the side effects, he couldn't cope with the terrifying side effects (or was it me that couldn't ). I immediately gave him the remainder of the reduced dose and just prayed and worried once again I had done something wrong.
I'm ashamed how I'm not dealing with this, especially as I am a registered nurse. But all that seems to go out the window. I can't believe in a matter of a few weeks My Kai has almost disappeared. His normal self is so full of life, happy and playful, loving everything and everybody, running free in the woods and fields, all this has stopped.
I can't stop thinking and going over in my head why he could have so suddenly started with this, my worst fear is that it could be a brain tumour, or was it something I've either done or not done, I can't bear it.
I keep thinking about a couple of weeks prior to this starting, he had found a partly eat bird by the waters edge and before I could get to him had munched down on a lot of it. He had ate the head and it's guts and even a wing. My friend and I were quite some distance away but could see this, the ground was difficult to manoeuvre and I couldn't get to him in time to stop it, but when I did it made me feel so sick and quite distressed, not the type of behaviour I would have expected from Kai, my gentle boy.
However after this he didn't seem to have any ill effects apart from, please forgive me for explaining, but he vomited the wing feathers and all I couldn't believe it.
The next day my friend and I changed our route somewhat, but to my horror Kai went missing. He had remembered where he had found this awful disgusting bird and taken off like the wind. By the time we got there, yes, he had ate some more !!!!! I managed to get to him and put a halt to this. I knew somehow I had to remove what was left of it but how. I had to use my glove to pick what was left and throw it as hard as I could into the middle of the lake. It took a few days for me to get over the horror of it all.
I'm trying to think of every little thing to try and explain these seizures away. Am I fooling myself ?? I haven't changed anything in our routine so this episode and one other made me think could he have picked up some toxin or parasite from this disgusting episode. What have I done or even worse what have I not done to cause this.
I'm scouring the threads looking for solace. I'm scared, really scared. Please help.
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post #4 of 191 (permalink) Old 01-15-2015, 11:45 PM
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Firstly do not blame yourself. It will not be anything you have done or not done. Eating a dead bird is what my vet laughingly calls a dietary indiscretion. Left to his own devices this would probably be Kai's meal of choice! And do not feel that you should be dealing better with this because you are a nurse. I have known doctors call ambulances in hysterics when their own child has a minor injury. It is because you have a depth of knowledge and fear the worst. I do think you need to get Kai to a specialist who deals in seizures as Doug has suggested. You will get good advice and support here. I have not been through this with a loved pet but my daughter suffers from infrequent epilepsy. To be honest I think it is probably worse with a pet because we cannot explain things to them and they cannot explain to us.
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post #5 of 191 (permalink) Old 01-15-2015, 11:58 PM
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Dear Maggsd,
Hey, I just wanted you to know there are people here who care about you and your Kia. I'm so sorry to hear this is happening and it is really scary, particularly when the medication has such dramatic side effects. Try to just focus on what you can do now to comfort Kia and continue with the treatment that the neurologist has charted. You didn't do anything to cause this. One thing that might help would be to take notes, so that you have a record of the time you administered the medication, Kia's response and other things you notice. That record may help when you speak with the neurologist again. Prayers and Hugs. Karen

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post #6 of 191 (permalink) Old 01-16-2015, 12:42 AM
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I have been on a similar path and said the same things that you are. However in your case there is HOPE and LOTS of it! You just need to hang tight and get through these choppy waters first.

It is not unusual for pups to develop this condition at a young age. They go on to live long and healthy lives once the medication has been sorted and often pass away from things other than seizures many, many, many years later. Unlike other health conditions the time in between seizures is usually good. The trick is getting through this awful time of adjustment of the medication. It is absolutely heartbreaking. I know what you mean when you say that you just want Kai back. He will return he just needs a bit of time first.

We went to visit a farm before Tia got sick, she ate quite a bit of sheep poop despite my attempts to discourage her. There was a risk that a parasite caused all of this but my girl was a lot older and I now realise that she most likely had a brain tumour due to her age.
I was shocked that my boy also ate a sick bird. He is kind and gentle and the most unlikely personality to do this. He turned out fine.

I would still try to seek direct contact with a neurologist and cut out the middle man.

My vet also dismissed thyroid issues based on symptoms and thought that I was wasting my time insisting on the T4 test. It did turn out to be low. Apparently low is very low for goldens.

During my seizure journey I found this email group
Canine Epilepsy Resource Center & Home of the Epil-K9 List
It helped me feel less alone knowing that others were going through the same thing right now. They also might be able to offer more advice about getting through the adjustment stages of Pheno.

I remember the absolute heart break that you went through with Fluke and Harry, to see you going through this now is devastating. They say that tests like these are only reserved for the advanced of souls. It will take your relationship to a whole new level.

I wish that time passes quickly for you so that you can reach a safe plateau.

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post #7 of 191 (permalink) Old 01-16-2015, 09:00 AM
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Thinking of you this morning. How is Kai today and how are you? Probably you are in the middle of your work-day there. Post an update when you have time later.

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post #8 of 191 (permalink) Old 01-17-2015, 02:52 PM Thread Starter
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I know - One Day at A Time

My grateful thanks to all who are posting and supporting me once more as I travel this difficult path. I can't tell you how much this means. I had to call in sick yesterday as I couldn't bear to leave him. I've got two days off then I will have to return as being a nurse you usually go in no matter what. My sister lives in another town and keeps telling me I can't be with him 24 hours a day, I know, but the thought of leaving him is awful. Is there anybody out there who has had to leave their seizure dog alone at times ??

I was woken this am by Kai barking, he seems to be doing this a lot more. He used to be a quiet boy. He is also whining/crying quite a lot, and nothing I do seems to help. He comes straight up to me, I try everything I know, cuddles, play, or toileting, but nothing seems to work. Then out of the blue he lies down and chills. I'm finding this new behaviour challenging, and yes, I feel useless.
Well it's now late afternoon, Kai is sleeping, but I find myself watching his every little move and wondering if every twitch or stretch is the start of another seizure. I'm frightened to leave him and go upstairs. I feel I can't do anything, just watch him. I'm sure my behaviour is not normal !! My life as I knew it has abruptly stopped, I'm getting more depressed and full of sadness about things by the day. Doug, thank you so much for remembering me and my beautiful boys. This episode is taken me back to that terrible time when I lost them both with days of each other. It's so very kind of you. By the way your Lexi, Hudson and Tia are absolutely gorgeous, are they still with you ?
Your suggestion of cutting out the 'middle man' is a thoughtful suggestion, but the hospital where the Neurologist is based is some distance away. Then there is the financial situation. I just hope my insurance will pay out, as being single, my income isn't great, and I've had to use credit cards to help me out :-(
For the time being I'm happy to accept the Neurologist's advice via the vet, this way there is no cost, but if it comes to it, I may end up having to take him there.

I broke off my post as it was getting late.

Well last night Kai had his medication as per vet's instructions, and then it was a case of trying to get some sleep, which wasn't very successful as my virus is still keeping me coughing for periods through the night !! However, he seemed to have a better night and today he seems a little better, still wobbly and ending up spread-eagled when he loses his balance. I think he has forgot he can't turn on a penny any more.

I have continued with the instructed dosage, at the advised times, though the vet has said in a week he will have blood taken to assess if he is in the therapeutic range. If so and if the seizures are under control, she has said to try and reduce the Pexion, as he is on a large dosage. But that's a way off and I'm taking things day by day.

Something that is worrying me is his behaviour. I still can't understand how odd it is, he used to be such a quiet boy but now he seems to be much more naughty and the whining or howling are very strange. I have to go into work tomorrow and as you'd expect, it's an early start so I need to give him his medication a couple of hours earlier, I'm just hoping this wont upset him.

Well I'm sure you've heard enough from me, thank you for reading and again all your support.

Just thought if attach a cute photo of my little boy.
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post #9 of 191 (permalink) Old 01-17-2015, 03:26 PM
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He is a beautiful boy!
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post #10 of 191 (permalink) Old 01-17-2015, 03:29 PM
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Having had to take medication for epilepsy I can assure you that this in itself makes you feel out of sorts, indeed i'm sure my behaviour was not normal for a long while. My balance was shot to hell and as for stairs my mum used to have to tap my right foot so I would know how to start and once started if I stopped I became confused. I was tearful and irritable and I knew what was happening. Before seizures I would become argumentative and loud as if the control part of my didn't work anymore.

As a nurse the rational side of you appreciates the effect medication can have on demeanour, but the mum side of you is overruling your senses. No wonder you are in a state. Doug gave you very good advice, keep a food diary and see if you can find a trigger. I went back to basics, cut out sugar, milk, wheat, alcohol, potatoes for 6 weeks and then introduced a single item at a time. Maybe you could just keep Kai on his normal food and see how he goes, introduce his treats one at time and note for any reactions.

As for it being anything you did, no absolutely not. Nor is it likely to be the dead bird, disgusting as it was. Rationally if every dog suffered seizures from eating dead birds and animals the vets would be rammed with cases. You are looking for answers where there are non. Epilepsy is as my dr said, just a short circuit in the brain. For a while Kai will be different but he is still Kai underneath, just a little confused and doped up.

I hope that you find the correct dose quickly and that Kai adapts to his new normal and with that his balance and character return, speaking from experience it takes a while but it does balance out.

Best wishes
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