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Discussion Starter #141
My boy Kai ♥

Hello friends, it's been a while since I posted. Life has been eventful to say the least.

When Kai returned to hospital, I don't think they were pleased I had stopped his steroids, but he was much better off them. I understand for some they work but for Kai (and me) they made his life a misery !!

Ever since he started with these seizures I've had this thought in the back of my mind, as those who know Kai's thread, I rescued Kai from a breeder who didn't want him because he wasn't 'perfect' for showing !! I was told he was stung badly by a bee on his face, which in turn damaged some cranial nerves, resulting in one of his ear's being droopy and doesn't sit quite right while at rest. At the time I wasn't concerned, he was a golden that needed a loving home.

However, since all this began I (and the people that know him) can't help thinking maybe this has had some bearing on his health problem. I researched and researched and found a clinical paper stating that in certain cases bee sting can prove to be toxic and if the toxin reaches the brain can cause encephalitis. So I'm now wondering how did the breeder know the bee sting had caused nerve damage ?? Was he very poorly, did she have him neurologically examined ?? Did this sting cause the lesions, have they been there since he was stung ? and in turn something triggered the seizures. Something I will never know.

I had mentioned this previously to the neurologist but she dismissed my comments However, at this last visit I was determined to make my point. Again she dismissed my suggestions, but when I told her I know this can happen in 'human physiology' , she said she had no knowledge of this.

Kai was taken to be examined by the rest of the neurological team and in particular her senior. On return she said there didn't seem to be any deterioration in his symptoms and he seemed a little better. Then to my surprise she 'apologised' !!!! She said her senior had heard this can happen in some cases, hurray I was vindicated !! I hadn't talked rubbish. She even said she would read up on the matter. She also said as he had been more controlled I could reduce his Keppra, hurray !!

They informed me that Kai didn't need to be reviewed for another 8 weeks, that is of course, unless he had any deterioration. She insisted there had to be NO change in his diet, not to give him any treats, and defiantly not let him drink sea water. This was all because any disruption in his SALT intake can disturb the effect of the potassium bromide. Well the 8 weeks are almost up and we return to the hospital in a few days. Kai initially had a few focal episodes as our supplier was late in getting his food. Once this was sorted he was fine. No episodes for about 6 weeks, this is definitely a FIRST !! ??

Just over a week ago I had to get a repeat prescription of his KBr. My own vet supplied 'Libromide'. I am presuming this is a trade name as its contents state 'potassium bromide' as the main ingredient. However since giving him these tablets, he has had a few small episodes, not grand mal, but small short episodes only lasting few seconds, always after giving him the Libromide. Then he's ok again. Very strange !!

We return for review in a few days of course I will mention thIs to them. But on the whole over this time he has been remarkably well, almost back to his normal self. Even better !! I

So at the moment Kai is on Pheno, KBr, Keppra and another medicine called Cyclavance, (which is given to animals with dermatitis to reduce the immune response) however I reduced this a few weeks ago.

It's almost normal life again, though he does try my patience, he wants to play and be outside so much, I haven't the energy, this frustrates him and he does play up !! I hope that our story will help others who are feeling helpless when their golden experiences seizures. They don't frighten me any more, yes they can startle you, but no I won't let them rule my life, OUR lives.

Anyway like I said, we are due back for review in a couple of days, just keeping everything crossed he remains stable. It will be interesting to see what they make of his present status, as I'm sure they thought he would deteriorate.

ps. I will get some more pictures and post soon x
 

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Thanks for this news. I was also wondering how you were doing. Lovely that the vet apologised. They can't know everything but she should have listened to you before and checked it out.
 

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Kai

Hello friends, it's been a while since I posted. Life has been eventful to say the least.

When Kai returned to hospital, I don't think they were pleased I had stopped his steroids, but he was much better off them. I understand for some they work but for Kai (and me) they made his life a misery !!

Ever since he started with these seizures I've had this thought in the back of my mind, as those who know Kai's thread, I rescued Kai from a breeder who didn't want him because he wasn't 'perfect' for showing !! I was told he was stung badly by a bee on his face, which in turn damaged some cranial nerves, resulting in one of his ear's being droopy and doesn't sit quite right while at rest. At the time I wasn't concerned, he was a golden that needed a loving home.

However, since all this began I (and the people that know him) can't help thinking maybe this has had some bearing on his health problem. I researched and researched and found a clinical paper stating that in certain cases bee sting can prove to be toxic and if the toxin reaches the brain can cause encephalitis. So I'm now wondering how did the breeder know the bee sting had caused nerve damage ?? Was he very poorly, did she have him neurologically examined ?? Did this sting cause the lesions, have they been there since he was stung ? and in turn something triggered the seizures. Something I will never know.

I had mentioned this previously to the neurologist but she dismissed my comments However, at this last visit I was determined to make my point. Again she dismissed my suggestions, but when I told her I know this can happen in 'human physiology' , she said she had no knowledge of this.

Kai was taken to be examined by the rest of the neurological team and in particular her senior. On return she said there didn't seem to be any deterioration in his symptoms and he seemed a little better. Then to my surprise she 'apologised' !!!! She said her senior had heard this can happen in some cases, hurray I was vindicated !! I hadn't talked rubbish. She even said she would read up on the matter. She also said as he had been more controlled I could reduce his Keppra, hurray !!

They informed me that Kai didn't need to be reviewed for another 8 weeks, that is of course, unless he had any deterioration. She insisted there had to be NO change in his diet, not to give him any treats, and defiantly not let him drink sea water. This was all because any disruption in his SALT intake can disturb the effect of the potassium bromide. Well the 8 weeks are almost up and we return to the hospital in a few days. Kai initially had a few focal episodes as our supplier was late in getting his food. Once this was sorted he was fine. No episodes for about 6 weeks, this is definitely a FIRST !! ??

Just over a week ago I had to get a repeat prescription of his KBr. My own vet supplied 'Libromide'. I am presuming this is a trade name as its contents state 'potassium bromide' as the main ingredient. However since giving him these tablets, he has had a few small episodes, not grand mal, but small short episodes only lasting few seconds, always after giving him the Libromide. Then he's ok again. Very strange !!

We return for review in a few days of course I will mention thIs to them. But on the whole over this time he has been remarkably well, almost back to his normal self. Even better !! I

So at the moment Kai is on Pheno, KBr, Keppra and another medicine called Cyclavance, (which is given to animals with dermatitis to reduce the immune response) however I reduced this a few weeks ago.

It's almost normal life again, though he does try my patience, he wants to play and be outside so much, I haven't the energy, this frustrates him and he does play up !! I hope that our story will help others who are feeling helpless when their golden experiences seizures. They don't frighten me any more, yes they can startle you, but no I won't let them rule my life, OUR lives.

Anyway like I said, we are due back for review in a couple of days, just keeping everything crossed he remains stable. It will be interesting to see what they make of his present status, as I'm sure they thought he would deteriorate.

ps. I will get some more pictures and post soon x
I am hoping and praying all is well for Kai and you-YOU BOTH sure DESERVE it! So glad to read this update and look forward to pictures!!
 
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Karen
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I'm really glad to read your post and to learn that things have been a little more stable.
"No episodes for about 6 weeks, this is definitely a FIRST !! "

You are such a strong advocate for Kai, researching and thinking and working to find a solution.

"She said her senior had heard this can happen in some cases, hurray I was vindicated !! I hadn't talked rubbish. She even said she would read up on the matter. She also said as he had been more controlled I could reduce his Keppra, hurray !! "

Sending Hugs, and praying that things continue to stabilize.
 

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Hi Maggs, so glad to read that things have been a lot more stable for Kai, what a relief. You have been through so much with him with the seizures, so it's fantastic news to hear that things have improved a little for you both. Give him a hug from us!
 

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Maggs

Sending good thoughts and wishes to Kai and to you!
 
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Maggs

Checking in on you and Kai.
 
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Maggs

Maggs: Are you uploading each picture after choosing it. Mine will only take it off if I click on remove. Go to Manage Attachments, click on choose file and then click on the picture, then click on upload, then go to choose file, again, click on the picture, and click on upload.

If this doesn't work, just type another post and put the second picture in the second post.
 
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Discussion Starter #152
A New Year, A New Story for Kai

What is 2016 going to bring for Kai, who knows. Over the months I have learnt that nothing has a pattern with him, he continues to have seizures about every 4 weeks. In between these periods, he has a normal doggy life, running, swimming, playing and of course EATING !!! He is special boy, and loves every soul on this planet of ours. I can truly say that he hasn't a bad bone in his beautiful body.
I know the Specialists have said that the seizures are a result of the lesions they found on his MRI and wanted to pump him full of medications that left him a shadow of his former self. Needless to say, I took him off all the medications apart from his seizure meds, as they were destroying his body. His health and body returned to normal. Yes he continues with his seizures and has focal episodes every evening, but on the whole if he didn't have these episodes, he would be a completely normal Golden. I feel in my heart that his quality of life is more important than attempting to lengthen it with drugs that have terrible side effects. Who is to know when his time will come, but in the meantime he is enjoying his life. As you can all witness from this photo. ??
 

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Hi Maggs, glad to hear that Kai is continuing to do well and hope that you are well. It sounds like you've done the right thing taking him off the meds that were knocking him about and as the pic shows he is certainly enjoying himself :) I love nothing more than a muddy golden having lots of fun!
 

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Kai

What is 2016 going to bring for Kai, who knows. Over the months I have learnt that nothing has a pattern with him, he continues to have seizures about every 4 weeks. In between these periods, he has a normal doggy life, running, swimming, playing and of course EATING !!! He is special boy, and loves every soul on this planet of ours. I can truly say that he hasn't a bad bone in his beautiful body.
I know the Specialists have said that the seizures are a result of the lesions they found on his MRI and wanted to pump him full of medications that left him a shadow of his former self. Needless to say, I took him off all the medications apart from his seizure meds, as they were destroying his body. His health and body returned to normal. Yes he continues with his seizures and has focal episodes every evening, but on the whole if he didn't have these episodes, he would be a completely normal Golden. I feel in my heart that his quality of life is more important than attempting to lengthen it with drugs that have terrible side effects. Who is to know when his time will come, but in the meantime he is enjoying his life. As you can all witness from this photo. ����
So glad to hear that Kai is enjoying life!
 

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Discussion Starter #156
'Spoke too Soon'

I think I must have spoke too soon, life has been difficult over the last few days. As I have explained previously, Kai was having a seizure every few weeks, but this last week had four. It shocked and upset me again. I had begun to think we were under control, my mistake.

I spoke to the Specialist and they gave me instructions to double one of his meds for a few days, then to increase it by a third after that. It's a little difficult as we were at the end of our supply, and with Easter I can't get further supplies till next week, so could only double up for two days instead of five. Whilst waiting for replenishment.

I had also previously told the Specialist about Kai's other ' episodes' but while on the phone mentioned them again. I'm not sure what they are but happen every night around the same time period, about one to three hours after taking his potassium bromide. He will be resting, then suddenly looks startled, gets up and runs around as if he's seeing something and scared. There are no tremors or jerks and are different than his seizures episodes.

I have done my research as usual and have read in some circumstances hallucinations can be a rare side effect of potassium bromide. Now I'm not saying this is the case, but it just seems odd it happens every night at the same time after the administration of Kbr, and only started after he was commenced on this.

Needless to say, the Specialist was not convinced, but I can almost set my watch by them !!!

As long as he remains clinically stable we are to return for review in a week or so, it will be interesting to see what they say. I am taking along some research papers which back up my suspicions.

I've had two major ops in the last six months but apart from that, Kai absolutely loves his walks and treks, and will swim at the 'drop of a hat' ! He still has quality of life and loves just being around people. I will update my thread after our review at the Specialist hospital.

Thanks to all who continue to read my thread, it does help.
 

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Poor Kai - and poor you. I hope the specialist can find some treatment that makes his life a little better. And I hope you have quite recovered from your operations.
 

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Kai

I think I must have spoke too soon, life has been difficult over the last few days. As I have explained previously, Kai was having a seizure every few weeks, but this last week had four. It shocked and upset me again. I had begun to think we were under control, my mistake.

I spoke to the Specialist and they gave me instructions to double one of his meds for a few days, then to increase it by a third after that. It's a little difficult as we were at the end of our supply, and with Easter I can't get further supplies till next week, so could only double up for two days instead of five. Whilst waiting for replenishment.

I had also previously told the Specialist about Kai's other ' episodes' but while on the phone mentioned them again. I'm not sure what they are but happen every night around the same time period, about one to three hours after taking his potassium bromide. He will be resting, then suddenly looks startled, gets up and runs around as if he's seeing something and scared. There are no tremors or jerks and are different than his seizures episodes.

I have done my research as usual and have read in some circumstances hallucinations can be a rare side effect of potassium bromide. Now I'm not saying this is the case, but it just seems odd it happens every night at the same time after the administration of Kbr, and only started after he was commenced on this.

Needless to say, the Specialist was not convinced, but I can almost set my watch by them !!!

As long as he remains clinically stable we are to return for review in a week or so, it will be interesting to see what they say. I am taking along some research papers which back up my suspicions.

I've had two major ops in the last six months but apart from that, Kai absolutely loves his walks and treks, and will swim at the 'drop of a hat' ! He still has quality of life and loves just being around people. I will update my thread after our review at the Specialist hospital.

Thanks to all who continue to read my thread, it does help.
I feel so awful for all Kai and you are going through!! Will pray for you and hope the specialist comes up with something new. I agree with you that it is too coincidental that Kai reacts within the same time frame, after receiving the potassium bromide.

Could the vet or specialist sell you more of the meds, until you get yours?

Did you have two major operations?
 
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Maggsd

Was thinking of you and Kai this morning. Did the specialist come up with anything new?
Praying for you both.
 
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Maggsd

Was thinking of you and Kai this morning. Did the specialist come up with anything new?
Praying for you both.
Hi Karen, thank you for thinking about us. The Specialist didn't have anything else to add and in fact discharged him, with the proviso that I could make an appointment for him at any time if things deteriorated.
Well over the past few months things have been much the same, then came August, what an aweful month. Probably partly my own fault ? Kai had many more seizures and episodes, I don't know whether it was because I became a little lax in his medication regime, which is quite demanding, he is on 3 different medications at different times eg., at 6.00hrs, 14.00hrs,18.00hrs and finally 22.00hrs. I was late with some of the doses and actually missed one altogether. I become extrembly tired having to get up every morning at 06.00hrs even when I'm not working, when I have to get up even earlier !! It would be lovely just to be able to sleep through a little while longer, just once ?.

Nevertheless, Kai remains in himself much the same, a golden loving life to the full.

I am thinking I might get back in touch with the Specialist if things don't improve this month. We will see. I am going to try and post a picture of my 'big' boy so you can all see how beautiful and healthy he actually looks, one would never know he has this affliction, and in fact he gets an aweful lot of compliments. ???
 

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