call for help

Share your story, questions, concerns.

Moderators: Box40Rin, Liz Hansen

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Mon Sep 16, 2013 6:16 pm

Hey Ellen,

your post was sooo heartening that I did a copy/paste into Word and printed off a copy that I couldn't wait to thumb tack to a cabinet door in the kitchen ... thank you for your compassion ... ♥♥♥♥

hugggzzzzzzzz ...

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: call for help

Post by Gentle Jacob's mom » Tue Sep 17, 2013 6:34 am

I agree, it doesn't matter how much you spend on this stupid disease, it does what it wants to do. We couldn't afford more than initial tests with Jake when he first started seizing, and we saw a wonderful holistic/conventional vet (in another state) who luckily he wasn't terribly expensive, but helped us so much. A year later we did the 6 panel thyroid tests and after Jake started Keppra did peak and trough, then a couple of basic Keppra level testings. (which we just found out neurologists etc really don't know how to apply results to treatment). Earlier this year we were considering Lyrica when Jake started seizing more and we didn't realize the compounded Keppra was behind it. There was no way we could afford it.
We're just about to go into our eighth year with this and we would never have been able to weave through all of the muck without our vet working with us. There were things she learned right along with us, and when there's an emergency, she's there through it all, sometimes literally holding me up, and helping in ways that I've never seen a vet do to help a client. It's so frustrating to me that not a whole lot has changed since we started this journey with Jake. Yes, there have been a few more drugs that have been brought into the mix, and thankfully they have helped some, but I see far too many vets turning a blind eye to this and relying on old school ideas. Meanwhile the percentage of dogs grows, and the dogs and their loving owners suffer. Yes, I'm ranting. I think it's time for the great vets and neurologists to become the majority, not the minority. Not when theres' so much at stake.
Jake's doing well so far after his seizure yesterday. I'll breath easier when we get past what we call the first 48...
Lynne

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Tue Sep 17, 2013 2:40 pm

thanks Lynne,

your post help's greatly as Ellen could tell I have been having some personal issue's with "guilting" myself ... and today too for that matter ...

after I tried the "natural" dog food from a pet store here in town last year and nothing changed I went back to the cheaper store-bought ... then just last week after checking the ingred. of the dog biscuits I found it had BHA in it ... then realized that while on the healthier dog food last year I was still giving her the BHA in the biscuits ... ooops, :oops: ... so now that I feel stupid I went back and picked up some healthy biscuits and am waiting for Fri. to pick up some "Diamond Dog food" when the order comes in at the pet store ...

then stopping at the vet's office to refill the keppra and valium (big valium weekend and I added a 3rd dose of keppra daily)I find I can't get it refilled till Thurs.(she's only here Tues. and Thurs) so she will bring some with her as she doesn't keep it on hand here at this office ...

and because a "fill-in" pharmacist had said that with a "script" I could get liquid valium (for a hefty price) I asked for a price check at the vet office for liquid valium and was told by the receptionist after she went back and asked the vet, "That they can't get it" ... I said, "can't?" and she said, "yes, can't!!!" ... so asked "Can she script it to me for the pharmacy?" ... and again was told "no, she can't!" ...

so look's to me like they don't wanna help me get what I need to help Molly ... and that we are stuck with only the tablet which don't work quick enough to stop cluster's ... even when I precrushed/mixed with water and used rectally ...

and because the vet. I am using won't talked to me (except thru the receptionist) without an appoint. $$$ ... she doesn't know I've added a 3rd dosage of keppra, I couldn't ask if I'm using the regular keppra or the XR, I couldn't find out about using Zonisamide(50mg), or getting clorazepate for use during the 1st few days after a seizure to keep Molly from having recurring seizures, or since kbr takes so long to get to therapeutic levels(without doing a "loading-dose") when would be a good time to start her on it, or about doing a 6 panel thyroid test which would probably be useless info to this backward vet ... I did leave a copy of the "valium protocol" for her, not that I expect that to mean anything either ...

and I can't get the liquid valium for the "valium protocol .... or enough tablets to do the every 2/3 hour for 48 to 72 hours after ...

so I contacted the office of another vet office where there's 3 vets that rotate thru the office ... and can't find out if they have or can script liquid valium without 1st getting a $100.00 office/consultation appointment .... even if I did that would mean starting over with all the tests ... and if they didn't then the office call would be a waste of money ... or the 3 possible is I walk away still not know if they have or can script liquid valium ... just thinkin of how long it has taken for me to find out that the vet I'm dealing with won't/can't help with what I need when Molly cluster's ...

sorry, "rant-over"... do I sound as crazy as I feel ... :shock:

p.s. I got salmonella once in this place, went to the clinic and was given a quart size zip-lock bag of vials for the 1/2 dozen samples of bodily stuff to bring back to them for them to send off to a lab for testing since know one had any idea what was wrong with me ... 10 days later the results came back so then they could "treat" me ... I said, "A person could died in alot less time then 10 days!" they wasn't tooo happy with me but what it says is ...

just cause a town has electricity, running water, and the internet doesn't mean it has made it to the 21st century ... :lol: :lol: :lol: :lol:
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Tue Sep 17, 2013 3:57 pm

Hi all,

after typing my last post I had what I thought was a "brain-storm" of an idea ... if the vet doesn't keep any Keppra or valium at this office here in town ... then since it's my sun and I'm off work I'd drive to her other office(which is open and has other vets working it) in the next town ... after going back to the vet office here with my idea was told they couldn't just call their other office and have the prescriptions ready for me to pick up if I drove there, the vet would have to actually be in that office for her to fill my prescription ... "well, you know valium is a CONTROLLED SUBSTANCE, Chris!!!!" ...

and I'm thinking: "Duh, what da heck was I thinking ... :lol: :lol: :lol: "
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Wed Sep 18, 2013 3:09 pm

Hi Lynne,

How's Jake ... did you use the clorazepate 15 mg's. every 8 hours for the "48 hours" ... do you do the "valium protocol" ... how well/obvious difference's do these 2 things make ...

with us ... Molly and I ... it seems like it take 72 hours before I breath easy ... and of course that doesn't means she's 100% "back to normal" ... it only means that I'm past the overly concerned phase of waiting for the next seizure because she starts showing enough sign's of getting back to normal ...

give you bud a great big hugggzzzzz for us ... ♥♥♥♥

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: call for help

Post by Gentle Jacob's mom » Thu Sep 19, 2013 5:42 am

Jake's doing fine so far. We haven't used Vallium Protocol. We decided to try Clorazepate (15 mgs every 8 hours for 48 hours) first and so far it has worked. We only use Vallium tabs periodically if we think he needs it, and use Vallium gel (100 mgs - 60 mgs immediately, then 40 mgs 15 minutes later ) when he seizes, so I don't know the differences for Jake.

Lynne

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Thu Sep 19, 2013 3:22 pm

Thanks Lynne,

the vet is going to check into/consider clorazepate 15mg every 8 hours for 3 days after a seizure ... and is happy that I have been able to get the 3x daily dosing of the keppra(asked and was told we are using the regular keppra) as well as my adding melatonin at bedtime ... she brought up Zonisamide as a possibility and I said, "let's wait and see how far we can get with the extra dosage of keppra, we made it a month on 2x daily dosing of regular keppra ... :D :D :D
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: call for help

Post by Kipsmom » Thu Sep 19, 2013 7:46 pm

Chris,

That's great that you've been able to do the 3x daily dosing for Molly. Sounds like a good vet visit, too. Glad Molly is hanging in there!!

Lynne, I'm glad to hear that Jake is doing well too!

Gotta love days with good news!
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Fri Sep 20, 2013 12:00 am

Hi Ellen,

feel better knowing that she listened this time and that I was able to have some "input" ... I did ask her if she has many dogs with seizure issues/have you had treat a lot of dogs with this problem ... she got that "far-away calculating" look and said, "oh yay ... tons of em" ... meanwhile her assistant was nodding her head constantly ... so at least I don't feel like Molly is 1 of the 1st dogs she can count on 1 hand she's treated ... then I asked if it has anything to do with the area we live in and she replied it was the large number of Labs. in this area ... still kinda bothers me somewhat that she seems to be relying on me to do research on it ...*shrugg's* ...

and it was her that asked saying, "I was talking to a neurologist friend and was wondering if you have thought about Melatonin ... when I told her I started the melatonin last weekend I noticed she was pleased with my having done that ...

then there's something else that might just be me or it might just be this vet. but it seems to me like it's almost a "push button - get a response" type of thing ... or just an automatic response - "oh it's time for meds, then it's a given that it's pheno. or pheno./kbr" ... and if you don't jump right on board with that idea that somehow makes you a "problem client" ... it was at this point that the vet seemed to me to "close down and become distant" ... not to mention she's soooo fearful of the "controlled substance" issues of valium that she to my way of thinking puts herself in the "dang near useless category" as a vet. and puts my dog in even a worse "life and death" situation when she needs the most help during the cluster seizures ... so you can imagine my surprise to find for this very short moment today of being open to thinking outside of "her own box" ... :lol: :lol: :lol:

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: call for help

Post by Kipsmom » Fri Sep 20, 2013 6:07 pm

It took me a long time to realize that with my own health, I feel better when I have done a lot of my own research and it agrees with what my doctor says. In this Internet age, I can see the doctor's eyes roll when I mention something I've read...I think they get a lot of wacky self-diagnoses. I saw that, too, with Kip's neurologist at first. But once they get to know you and realize that you're not a "nut," and are quoting actual medical research and
not anecdotal evidence, they tend to open up a bit and are willing to discuss more with you. You have to be your own best advocate when it comes to your own health, and certainly you have no choice but to be your dog's advocate (until we teach them to research themselves -ha!)
I hope your vet gets over the controlled-substance phobia with the Valium. We were always given 15 mls at a time ($19), which would get us through a couple of clusters. But I called and reported every time we used it, and never had any problem getting refills. Don't give up on trying to get it.
Hope you and Molly have a quiet weekend!
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: call for help

Post by cesullivan » Fri Oct 04, 2013 1:58 pm

https://www.facebook.com/pages/The-Wall ... ref=stream

I found this today on Facebook: The Wally Foundation: To provide financial assistance to the owners of canine epileptics and dog rescue groups to obtain medications and veterinary services.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Fri Oct 04, 2013 3:03 pm

Thanks

Did you try your own link as I can't get it to go anywhere ... and when I copy paste it into a new tab I get;

Sorry, this page isn't available

The link you followed may be broken, or the page may have been removed.

then I thought, "Now there's an idea ... why not a facebook page where we could all unite and talk to each other" ... :D

Chris and Molly
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: call for help

Post by Chris Douglas » Fri Oct 04, 2013 3:05 pm

I did a "search" on Facebook for the Wally Foundation and found this:

http://www.facebook.com/pages/The-Wally ... 9389044774

:D :D :D :D

Chris and Molly

edited: this link won't go anywhere either ... direct and when pasted into browser address bar .... but page is easy to find when 'Wally Foundation" is entered into search on Facebook ... must be an issue with this site ... :lol: :lol: :lol: :lol:
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Post Reply