My story ... so far

Share your story, questions, concerns.

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

Re: My story ... so far

Post by Chris Douglas » Fri Sep 20, 2013 1:36 am

something else happened last Fri/Sat. after the seizures from hell ... and it not unusual for up to 3 days after an episode of seizures ... but I mentioned it to the vet here while back and she looked at me like I was the one who needed a good dose of meds. ... :shock: ...

but Molly who's deaf can hear things after a seizure episode ...and I'm not talking about vibrations made by sounds either but the sounds themselves ... I don't know of course what she's hearing or how her brain interprets these sounds but she finds it confusing and strange ...

kinda funny to watch her ears respond, the head tilting, eyes darting around the room, roam's around room anxiously looking for the strange thing that she thinks should have a physical body attached to it, and she never seems to know what direction the sound came from even if the strange sound came from me or the t.v. ... she's never reacted to my voice at any other time ..

it gradually wears off/tapers off until she's deaf again ... :(

Chris & 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: My story ... so far

Post by Chris Douglas » Tue Sep 24, 2013 2:48 pm

so on my days off this week I was able to get to a health food store and pick up some Taurine 500 mg capsule's which we started yesterday ... and today I have a phone call into the vet with the request for "if she has given any consideration to the "clorazepate for 3 days after a cluster" that I had brought up to her last week and if so &/is ok - the cost?", ... now it's a "wait and see" ... :?
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: My story ... so far

Post by Kipsmom » Tue Sep 24, 2013 4:40 pm

Wow, that's incredible to think that Molly responds to sound after seizures! That is just wild! Too bad she returns to her non-hearing self...that is just the weirdest thing ever. Wonder what mechanism would allow that? Very interesting, indeed! Haha to think your vet thinks you are nuts with that one. I think it's fascinating.

By the way, I see you've added taurine - never tried that, but have heard it might help. But it reminded me to mention that we also had tried a B-12 and B-complex vitamin combo. No luck here, but thought it was worth a mention. I got the B-complex at GNC and the B-12 at Walgreen's because that's where I could find small enough pills.
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: My story ... so far

Post by Chris Douglas » Tue Sep 24, 2013 5:14 pm

hi Ellen,

yup ... she hears stuff and is baffled by it after a cluster seizure ... not even knowing which direction it came from ... :lol:

thanks for the B vitamin's idea ... will check into that ... and heard that seaweed/kelp is good for the thyroid but tooo much is a bad thing tooo ... :?

just got a call back from the vet's. receptionist saying, "they can't get the clorazepate for the 3/4 days after a cluster to 'break the clusters" ... saying it wasn't available anywhere she checked ...

and I asked how about "nasal Lorazepam" to use while she's clustering ... and was told it was in the same family (class) as Diazepam(valium) and Clorazepate, and therefore unavailable ... med's with the "aze" in the spelling ... \oo/

so I asked if these issue's of "availability" are a "supply issue"? ... and told it was ... don't know how truthful that is or what ... but at any rate I'm soooooo angry not to get any help to help Molly with the next round of seizure's I can't even tell you ... :x

well she's switched from it being a "controlled drug/medication" issue to a "supply issue" ... not that that helps us ... :lol:

wish there was a *bangin' my head against a brick wall" smiley ... :lol: :lol: :lol: :lol:

thanks again Ellen ...

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

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

Re: My story ... so far

Post by cesullivan » Fri Oct 04, 2013 1:25 pm

I'm pretty sure that vets can write prescriptions that can be obtained from a regular pharmacy. That is if the vet is licensed. My vet faxes in prescriptions to Costco and California Pet Pharmacy all the time.

Also, interesting about the hearing...you should video that for your vet if you can. Do fingernail clicking next to the ear (that's how my vet tests hearing).
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: My story ... so far

Post by Chris Douglas » Fri Oct 04, 2013 3:13 pm

My last phone had video ability ... but when life changes .... so now on a $16.00 "Go Phone" I can't even take pictures ... :( ... just me or what but I think the vet. is somewhat "uncooperative" ... but then again when I did check with the Pharmacy making sure that the meds were available and the cost I found out that he can only get 1 of the valiums ... can't remember if it was liquid or gel ... but it was "cost prohibitive" at 250.00 to 280.00 range ... and the vet is trying to say "now" that there is a "supply" issue ... :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: My story ... so far

Post by Chris Douglas » Sun Oct 06, 2013 12:48 am

Came home tonight from work to find that Molly had obviously had a "mild seizure" ... guess work on my part ... but she was alert, came outta her cage/bed without any problem and wasn't afraid of me like I was some kinda stranger ... ran fine and could see fine ... ate a double dose of food, just about drank the full water dish dry, trotted around the yard when let out ... and of course had a bad case of "I can't stop trotting" back and forth thru the house ...

I gave her an extra dose of keppra(250mg) and 10 mg's valium ... in about half an hour I was able to get her to settle down on sofa next to me and sleep ... now it's a wait and see if we can make it thru the night without more seizures ...

2 doses keppra 250 mg a day we went from every 14 day pattern to 28 day pattern ... added a 3rd dose in and it dropped to 22 days between seizures ... seems like it should went longer not shorter ...

now what do we do ...

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: My story ... so far

Post by Chris Douglas » Thu Oct 31, 2013 2:22 am

warning to readers: gonna have a rant here ...

I've decided it's all about money ... if I were rich then what? ... well to start I bet my vet woulda know there was generic keppra xr out there and for the right price woulda offered it to me along with every test know to mankind and a referral to a neurologist as well as a healthy dose of valium gel/suppositories and/or clorazepate ... even if the tests were inconclusive and the med's didn't help they woulda been options ... instead I get the valium/clorazepate isn't available and generic keppra xr doesn't exist ... I'm sure a neurologist wasn't even a thought cause of my $1,000.00 a month income but it make's me wonder how any dog with seizure's even survives living in this podunk backward town ...

there ... and yes, I feel better, thanks ...

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: My story ... so far

Post by Kipsmom » Mon Nov 04, 2013 8:14 pm

Chris -

Saw this today and thought of you and Molly.
http://thewallyfoundation.com

Hope you are hanging in there!
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: My story ... so far

Post by Chris Douglas » Tue Nov 05, 2013 4:11 pm

Hi Ellen,

thanks for the info. ... I have already been there and "liked" the page ... it doesn't seem to be a very busy page ...

on a different note ... have got my vet to agree to script me for generic keppra xr 500 mg after telling her the price $30.00 and availability at the local pharmacy ... then got the script to the pharmacy and will be able to pick up script day after tomorrow ... here's hoping that the xr will help keep the keppra levels at a more even level without the highs and lows of regular keppra given every 8 hours ... :D

Chris & 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: My story ... so far

Post by Chris Douglas » Fri Nov 08, 2013 2:15 am

hi all,

so today I picked up the generic keppra xr 500 mg twice daily and started Molly tonight on it ... here's hoping for the best possible outcome ... :D

Chris & 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: My story ... so far

Post by Chris Douglas » Sun Nov 17, 2013 3:13 pm

Hi all,

so last week we started the generic keppra xr every 12 hour dosing ... we just spent the last 2 days clustering ... and with only a 10 day spread between episode's instead of the 14 day pattern we had been used to ... Molly had been on regular keppra that had change things for the better in that even though she was still having a 2 week pattern she had stopped clustering and was having single seizure's that I would call "non-events" in that the seizure was mild and little post-ictal phase ... now on the generic keppra xr the cluster's are bad with a post-ictal phase that appears is going to last days ... maybe weeks ... still in the middle of the post-ictal as I write this she is pacing, pacing, pacing, fast trotting back and forth, ... and scaring herself at everything she notices at the last minute while passing by it ... the chair, the corner of a wall, bumping into stuff when making the u-turn's and scared that something reached out and hit her when it was only her bumping into the coffee table .... :cry:

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: My story ... so far

Post by Chris Douglas » Sun Nov 17, 2013 3:17 pm

and anytime I can get her to lay down briefly even and fall asleep within no time she jump's up like she's been shot and run's off scared ... then back to the fast trot back and forth non-stop lapping the house, front to back, back to front, hour after hour after hour until I put her in her crate ...
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: My story ... so far

Post by Gentle Jacob's mom » Sun Nov 17, 2013 8:30 pm

If regular Keppra worked I'd consider going back to that. If you have regular Keppra on hand I would give a little extra to see if you can settle her down. Maybe 250 mgs.

Lynne

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

Re: My story ... so far

Post by Chris Douglas » Mon Nov 18, 2013 1:28 am

hi lynne,

thanks for your help ... just got home from work and she's settled ... do have the regular keppra as the bottle wasn't empty when we switched to the generic keppra xr ... couldn't wait to get on a 12 dosing instead of the 8 hour which was killin' me and making my work performance something unspeakable ... lack of sleep does funny things after a while, lol ... and the regular keppra is a 250 mg capsule so I will keep that lil' extra dose in mind if we go thru this again ...

Chris & 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

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