Update on Dublin

Pirate is in a tight spot regarding meds - he can't take pheno, and the dosage that he takes to get 'theraputic levels' of KBr is *half* of what a normal dosage would be for his weight. I can't TELL you how much acupuncture and herbs have helped Pirate, especially with the little seizure behaviors.

I got so lucky to find a nice family owned compounding pharm around the corner!  They were so helpful as well since they fill about 20 scripts a months for epi dogs he told me.  Glad to know you are still able to order it though.  I am not sure of the measurements but I paid like 11.00 for the bottle of it.  My dog is a wee bit larger than your pirate.  I was interested in the actupuncture and herbs and heard back from the vet in the area that does that and I just can't afford the commitment right now.  My mother in law fell and broke her pelvis 3 weeks ago and we have to help pay to have her home converted in order to have her get out of rehab and be able to live alone again.  We just can't do it and the alternative vet wasn't cheap and wants you to commit to every two weeks at least.  Nope I don't have an extra few hundred a month laying around.  We just have to make due like we are for now.  I hope we have good luck with the bromide like you are.  So far so good though.

Stinks about your MIL - hopefully she'll be up and around soon. I understand too well about the money part - Pirate goes to get acupuncture every 8 weeks now as 'maintenance' but we never went every TWO weeks, even in the beginning.

When Meg first started taking Pirate to the TCVM vet for the seizure stuff, his body had absorbed so much KBr that it was at toxic levels and they were talking about having to switch him to a third (far more expensive) drug.  And the level Pi is at now is because they've been able to wean him off it in a big way.

There's no doubt but what TCVM is an extra expense -- I understand totally what you're talking about.  But it's only the first visit that is uber expensive -- the follow up visits (wieh include treatment) shouldn't be much more than an office visit at a regular vet. 

But the real difference lies in the extra training you get to help understand why they seize at night, what foods/chemicals you can use or avoid to help stability and help you diagnose why he started seizing again. 

When Meg had Pi see Dr. Xie in February, I went with her.  And wow --  before she even TOLD him that Pi was now seizing more, he **told her** "this is a time of year that is 'spring' for him because Spring in Florida IS February -- so be careful because he may seize more now.  It is to be expected."  I remember her looking at him saying "HE IS!!!"   But just by his exam of him and evaluating which organs were weaker than they should be, he immediately knew Pi was going to have more problems if he wasn't already.

But the typical medical response is to increase the meds more and more -- but that doesn't allow for an ebb and flow of the problem -- and the more drug they get the more they are dependant on it. 

It was the same with Kee Shu -- about a year into her treatment she began suddenly to have more seizure-type episodes -- but rather than increasing the stuff she was on, they did something totally different, and wow ... problem resolved.  She's on a fraction of a dose now of what she was when she started. 

When you can (and I understand right now is not a good time) you may want to re-address it.  Just a thot is all.

Thanks Callie I will do that.  The neuro gave me the impression that a couple seizures a month would be a success and that they aren't going to keep raising the meds.  He said that the goal is to lower the pheno and reduce the risk of liver disease.  That practice also has a nutritionist and some other alternatives and I am going to call to ask about that. 

 A couple of siezures a month is acceptable?!  WTH!  Our vet wasn't happy with Oreo's control until it was a minimum of 6 weeks between them and even then we kept working at it, eventually weaning her down to minimums of meds (off pheno completely) and very few and far between seizures (she was seizure free for something like 3 years when she died at 14 from a lung infection).  Set your bar high! :)

Thanks for the update on Dublin!

Ideally, my vet hoped to get Bear down to having seizures maybe 3 or 4 times a year.  With the severity and frequency of Bear's, that was a reasonable expectation.  I think a lot depends on the dog and his history.

I hope you are remembering to take care of yourself, too.

That is exactly what he told us.   But honestly I chat with many epi dog people and they have told me similar things.  Like to still have a few here and there without cluster is not unusual.  I don't know, I am new to this deal.  Our last dog had two seizures in ten years, not on meds.   I was not jazzed with the neuro.  I felt we had questions still after leaving.  And I was never told exactly how to administer the bromide.  I had to read up online about it and ask other people.  I just know that he has had a good week, with tons of fun and playtime and no seizures.  I am happy for each good week.  I expect him to seize again, and I will be prepared for it to still happen.  That way each good week is a gift!   I like our regular vet and will rely on her to help me out.  She is cool that when she doesn't know something she says to me "I have no idea, but I will find out" and she does and gets back us quickly.  She first consulted with the neuro to save us money and the visit.  But in the end we felt we needed to see him in case we have to rely on him for medication changes or additions later on.  And in an emergency, I would rather be a patient of theirs than a stranger off the street.  Remember that doctor thinks my breed is hard to treat and I hope to prove him wrong.

Tina I agree that it depends on the severity and frequency.  I guess after having six of them in 15 hours,  I might think that a couple of month is a big improvement.   I will just have to see where this journey goes.  I stopped worrying about tomorrow and I am enjoying my dog today.   Those tomorrows are going to come with or without my worries.  And your right I had to stop freaking out or I won't be here to see him manage this condition.

 no info here just wanted to wish you and Dublin luck and send our best non-seizure vibes!  I hope the new meds work

stardog85

 A couple of siezures a month is acceptable?!  WTH!  Our vet wasn't happy with Oreo's control until it was a minimum of 6 weeks between them and even then we kept working at it, eventually weaning her down to minimums of meds (off pheno completely) and very few and far between seizures (she was seizure free for something like 3 years when she died at 14 from a lung infection).  Set your bar high! :)

Sorry -- I'm going to disagree with that in a big way.  I'd rather find lower dose ways of managing the seizures and have the dog healthier longer.  At the University of Florida they are recommending in their neuro dept. that if a dog is seizing less than twice a month that it literally NOT be given pheno at all, but rather use acupuncture and herbs if at all possible (and yeah, they're teaching TCVM there) simply because the long-term damage can be such a risk.  It was a full two years before we got Kee seizure free but it was worth it to do it without drugs and keep her personality intact (in fact seeing her break out of the shell she was in was wonderful).

Seizures are so scarey -- and it's human nature to want to take a pill and make them go away and "not worry".  (my words - I'm not quoting anyone there)

When yous say "Set your bar high!" to ME that means doing it with the least damage possible, not necessarily the least seizures possible.  There's a trade-off many many times to suppressing the seizures with meds that is too high for many dogs to live a long healthy life.

losinsusan

And I was never told exactly how to administer the bromide. 

Honestly, I wonder about this myself. Pirate's dose is so tiny (.45 mL) that I usually just put the syringe all the way back in his mouth, squirt it it, and give him a soft treat to help him 'get over it' LOL. Apparently it's bitter (never tried it, myself...) and some people mix it in with food, but I wouldn't want all of his food to have that bitter medicine-y taste, so I've stuck with the whole, do-it-quick and move on approach.

 Umm where did I say that drugs were the total answer??  Yes, Oreo started out on the max dosage of pheno and a ton of bromide to initially control the massive clusters (up to 10 or so in 36 hours at one point every 4 weeks) but we took a longterm approach that had her down to sub therapeutic levels of KBr and *no* pheno.  I would never suggest someone just drug the dog to make the seizures stop!

My point was more that I'm appalled that a vet would say that a few seizures each month is ok (thus inferring that's where they'd stop because it's "ok" now) - in that situation I want a vet who is shooting for seizure free or a few times a *year* if at all possible.  And that the process be done with longterm effects, etc. in mind but not scaring us away from a differnt combo of things.

stardog85

 Umm where did I say that drugs were the total answer??  Yes, Oreo started out on the max dosage of pheno and a ton of bromide to initially control the massive clusters (up to 10 or so in 36 hours at one point every 4 weeks) but we took a longterm approach that had her down to sub therapeutic levels of KBr and *no* pheno.  I would never suggest someone just drug the dog to make the seizures stop!

Sorry if I misunderstood you -- but your "set the bar high" comment was truly what derailed me.  And as is mentioned above -- this is *so* individual to each and every dog and each and every situation (from breed to the family's ability to deal with it, including finances). 

But the "get it under control" phase is critical and a LOT of people get so freaked about seizures generally that they just land on the vet's doorstep saying "Make it STOP" and many people have the idea that a pill is supposed to make them stop ***FOREVER*** with no muss no fuss.  I'm not at all sure we can make the assessment from here that the vet *meant* 1-2 was "ok" forever -- I know that's not how they approach TCVM at all, but that typically you don't get them to level out for a while (months usually) but once they are ON heavy doses of the drugs it can be extremely difficult to get some dogs back off them.

Clusters add another whole level to this **but** not everyone has to deal with them either.    A couple of "clusters" a month would be a whole different thing than a couple of seizures lasting less than a minute.  Am I making sense?