Update On Rainey -- Final Update Post 1

[RaineysMom]

final update 3/8 :cry1

 

With more pain in my heart than I have EVER felt before, I wanted to let everyone know that there will be a new and brightest star ever in the Heavens tonite.

 

Rainey will be crossing the Bridge tonite at 5:30... my sweet baby girl will finally be seizure free and be her old sweet, happy, lovable self again :cry1 :cry1 I know that Tattoo, Lucy, Luke, Tsar, and many others will be there to greet her and show her the softest clouds on which to lie.

 

I haven't stopped crying all day. My heart -- and even more so, her Daddy's -- is breaking in a million pieces. I'm so sorry I failed you, Baby Girl. We tried with all our hearts to fix you. :cry1

 

thanks to everyone for all their kind words, advice and just being there all the years I've come here for help. :cry1

 

please hug your hounds tonite.

 

I'll post a tribute to her when I can see through my tears enough to type.

 

 

 

 

 

 

 

Wanted to update anyone interested on Rainey and also have 2 questions at the bottom, hoping to get some help here. I apologize for the length of this post.

 

Rainey, who just turned 10 in October, began having seizures on 8/17/10. By 8/30 she had had 3, so we started 60mg of Phenobarbital that night and by the next day, she was exhibiting horrible behavior from the side effects – whenever awake, she would bark/cry/howl/whine CONSTANTLY - so on 9/2, we saw the neurologist (Dr. Niman) for the 1st time and he started her on Keppra and by 9/10 had her off the pheno. She got a little better with her behavior but continued to have Tonic-Clonic (formerly called Grand Mal) seizures, although she went 23 days after starting the pheno (and then Keppra), not having another until 9/23. Sometimes she’d go 5-6 days without one, other times she seized every day or every other day. The med history is:

 

8/30 – pheno 60mg started, 2 x day

9/2 -- Keppra 500 mg started, 3 x day

9/10 – pheno completely stopped

10/4 – MRI and spinal tap done, nothing found

10/4 – Keppra increased to 750 mg, 3 x day

10/16 – Zonisamide 100mg started, 2 x day

10/25 – Zonisamide increased to 100mg, 2 x day

11/10 – Doxycillin started, for 3 weeks as thought to have a tick-borne disease possibly

11/24 – Pentoxifylline started, stopped on 11/29 – aggressive behavior started

11/29 – Thyroid meds started, .6 mg 2 x day

12/20 – thyroid meds increased to .9 mg 2 x day

12/31 – pheno restarted, 60mg 2 x day

 

Feeding schedule:

5:15am ½ cup dry food with 1 Keppra, 2 Zonisamides, 3 thyroid pills and 1 pheno

8:30am (days off only) additional 1 cup dry food, with chicken/veggies added

1:15pm 1.5 cups dry food (only 1 cup on days off due to addt’l feeding in a.m.), veggies/chicken and 1 Keppra

5:15pm (6pm on workdays, when Bruce gets home) – 1.5 cups dry food, veggies/chicken, 2 Zonisamides, 3 thyroid pills and 1 pheno

9:15pm ½ cup dry food with 1 Keppra

 

Every bump or addition to the meds was because of additional seizures (except the doxycycline). She’s had 32 seizures total – all WHILE eating, or within 20 seconds after eating. When she had 2 within 3 hours on 12/30 we bit the bullet and put her back on the pheno as nothing else seemed to be working. The longest she had gone without (other than the 23 days initially on the pheno) was 13 days after initially starting the thyroid meds, then she had 2 more within 2 days (we upped the thyroid at that point, 12/20), then went another 10 days until 12/30. Unfortunately, I found out about 4 days after restarting the pheno that thyroid meds are NOT to be given with 3 hours of any calcium as it affects absorption. And of COURSE I didn’t know that and was giving it to her both times with YOGURT. I wish I had known about it before restarting the pheno, we would have held off a little longer starting it. But thankfully, she has not had ANY seizures since starting the pheno on 12/30 – in fact, today we start decreasing the Zonisamide since she’s doing so well on it.

 

So…where we are at now. She is not the same Rainey she was even back in July. She is showing severe aggression to us, so badly that Bruce is now sleeping in the spare bedroom (she’s muzzled) as she viciously attacked me in bed back in December (I’ve already lost my right earlobe to her!) -- she actually had gone after me AND Bruce in bed prior to this, but this one was really aggressive. She can no longer be hugged (attacked me when I tried the last time, 2 months ago), kissed and most times I’m afraid to even pet her. She does not seem happy any more, she used to “prance” when she walked – gone. Other than the aggression, the next worst thing is the CONSTANT crying/whining/barking/howling (C/W/B/H) she does whenever she is awake. This is due to the effects of the pheno, it is causing her to think she’s starving constantly. We have already added veggies and boiled chicken breast to her food to try to fill her up more (I literally go through 1 # of defrosted veggies per day -- green beans, mixed veggies, carrots). And now, she’s not even sleeping like she used to – she used to sleep almost the whole day. Now, she’ll eat, sleep for maybe 1.5-2 hours, then be up and C/W/B/H until the next feeding, which is usually 3 hours away. I cannot even work from home when I need to now, she’s so bad I cannot concentrate and is too loud for me to do conference calls. Most nights she won’t sleep through. On top of all this, she poops and pees in the house EVERY DAY, has for the past 7 months. She has completely forgotten her housebreaking -- she’ll even just get up and go right in front of us, with no warning. No matter how good I clean up (had to buy a Hoover carpet cleaner) my house is TRASHED and stinks terribly.

 

We are now on the 7th month of all of this, and honestly, I don’t know how much more I can take. The only break I get is when I’m at work – I get home at 1pm (for her pill) so I’m with her most of the day. I’m totally stressed out, it’s causing stress between me and Bruce…even Nube is distressed when she starts up with the crying, etc. NOTHING stops her – not any voice command, loud OR quiet; no loud abrupt noise (like clapping your hands); ignoring her (she’ll bark DIRECTLY in my face for 20 minutes at a time). I don’t know what we are to do. The C/B/W/H is so bad that I find myself getting angry with her and getting resentful of her and then I feel horrible for feeling that way towards her. Bruce wants to repeat the MRI, more I guess just to see if something shows up now and to make ourselves feel better if we have to make that terrible decision. :(

 

If you’ve read this far, THANK YOU. The 2 questions I hope someone can help with are

1.Is there ANY suggestions on what to try to stop her from C/B/H/W – nothing we’ve tried so far does anything (in fact makes it worse).

2.Is there any other things I can put in her food other than veggies that are lower in calories (and fat, she has pancreatitus) to make her feel full?

 

Thanks again in advance….and sorry to vent for so long. I really hope no one thinks I’m a terrible mom for feeling this way…This is just SO freeking hard and I just don’t know how much more I can take – but I don’t want to lose my little girl. We have tried everything possible and literally spent a small fortune on her trying to get her well. I am trying REALLY, REALLY hard to deal with this and want to do everything possible for her but I don’t know if I can keep this up.

Edited March 8, 2011 by RaineysMom

[Guest K9_Lady]

Kim, you and Bruce are the best Greyhound parents! I am so sorry for what you all have been going thru. Everyone who knows you also knows how much you love Rainey and she knows too.

No suggestions just support, so call if you need anything. Hugs...

[Jenbo]

OMG! How very stressful for ALL of you.

 

I gave Myka non fat cottage cheese for a while, that or rice might help Rainey to feel full?

 

 

I hope others have some advice for you...

 

ETA, sorry just caught the no calcium info...

Edited March 1, 2011 by Jenbo

[TheFullHouse]

Holy cow! My first thought is to do another MRI and see if anything is showing up now. Since the MRI was back in October and her behavior has gotten increasingly worse, I would be suspecting a brain tumor. Honestly it's the only thing I can think of that would cause the severe personality changes. Since you've already treated for any tick born disease and she's being treated for low thyroid, the only other thing that comes to mind is low blood sugar.

 

I give you credit, this has to be horrible to live with and my heart goes out to you.

[Guest hlpnhounds]

Kim

I am so sorry to hear you are going through this. Neuro problems are so difficult to deal with. I can only imagine the stress you and Bruce are dealing with at this time.

 

In reading through your post, it seems that Dr Niman deals with seizure treatments a bit differently than I'm used to. Was Rainey ever hospitalized for phenobarb loading initially or just started on an oral dose right away ? I know the MRI was done but was a CSF tap ever done to check for any forms of meningitis or encephalitis ?

 

I'm sure there have been behavior changes through all of this. It is very difficult to manage this type of illness when it doesn't seem as though you have all of the answers at this point. Perhaps another MRI along with a CSF tap would give you a clearer answer---especially if you are considering euthanasia as one of your options.

 

I hope you get then answers you need for Rainey and for yourselves.

[Guest Energy11]

Oh, I am sooooo sorry to hear about all of this! Wow...you HAVE been through, and, are going through HEck!

 

I am wondering if all if this IS the meds, or maybe brain damage of some kind to the centers that control her personality?

 

***The ONLY suggestion I could add for you is what we give Goldie for her "night terrors" which last anywhere from a few minutes, to two hours... barking, whining, pacing, etc. NO aggression, is Valium. We give her 5 mg around 8 p.m. and 5 mg. when she comes in from her last turnout around 10 p.m. (*this is when HER behavior starts). SHE, too, is VERY food driven at night! ONLY on thyroid medication, the oral Valium, and 1/2 81 mg baby aspirin (Per Dr. Couto) and a Pepcid AC. I usually give her canned pumpkin and yogurt at night to help fill her up. Canned pumpkin isn't too high in calories.

 

It doesn't sound like your Rainy is happy at all, and you two aren't, either. You need to access the quality of her life, and yours, and go from there. Maybe talk to the vet and the neuro vet ... No matter what decision you make, it will be the right one for all concerned, I am sure, and YOU ARE NOT a bad Mom!

 

PM me if you need to talk! Love and hugs coming your way! Dee, Goldie and the rest ... p.s. I probably would not repeat the MRI, ... what would you do differently if you found something?? ....

[grey14me]

Oh how awful, I can't imagine Have you tried contacting Dr. Feeman or Dr. Couto...just from the 'greyhound' angle if nothing else. How odd that it only happens when/just after eating. Has your vet mentioned anything about that part? I know absolutely nothing about seizures but it just seems to me that it could have something to do with the act of eating. Maybe she doesn't get enough oxygen while she's eating? Have you tried all of the standard things, such as raising bowls, switching to ceramic or stainless (if plastic)? Have you tried hand feeding? I don't know...I just can't get past the fact that it's ONLY when/just after eating...just seems like there should be some kind of connection. Maybe switching food?

:grouphug

Edited March 1, 2011 by grey14me

[Houndtime]

I feel so badly for you. You are going through a really tough time and I have a feeling that Rainey is too. You are trying everything you can. I have no advice, just good, encouraging thoughts coming your way.

[RaineysMom]

thanks for the good thoughts, guys...I feel like a horrible mom, like I just keep failing her.

 

In reading through your post, it seems that Dr Niman deals with seizure treatments a bit differently than I'm used to. Was Rainey ever hospitalized for phenobarb loading initially or just started on an oral dose right away ? I know the MRI was done but was a CSF tap ever done to check for any forms of meningitis or encephalitis ?

 

Hi Lori, both our regular vet and Dr. Niman just started her on the pheno (initially, back in August, then we stopped it), so maybe it's common for some? Also, Dr. Niman knew (after the first time, went 23 days) how well she responded to it the first time.

 

also, she had a spinal tap done along with the MRI in October, both clear.

 

I am wondering if all if this IS the meds, or maybe brain damage of some kind to the centers that control her personality?

 

***The ONLY suggestion I could add for you is what we give Goldie for her "night terrors" which last anywhere from a few minutes, to two hours... barking, whining, pacing, etc. NO aggression, is Valium. We give her 5 mg around 8 p.m. and 5 mg. when she comes in from her last turnout around 10 p.m. (*this is when HER behavior starts). SHE, too, is VERY food driven at night! ONLY on thyroid medication, the oral Valium, and 1/2 81 mg baby aspirin (Per Dr. Couto) and a Pepcid AC. I usually give her canned pumpkin and yogurt at night to help fill her up. Canned pumpkin isn't too high in calories.

 

It doesn't sound like your Rainy is happy at all, and you two aren't, either. You need to access the quality of her life, and yours, and go from there. Maybe talk to the vet and the neuro vet ... No matter what decision you make, it will be the right one for all concerned, I am sure, and YOU ARE NOT a bad Mom!

 

PM me if you need to talk! Love and hugs coming your way! Dee, Goldie and the rest ... p.s. I probably would not repeat the MRI, ... what would you do differently if you found something?? ....

 

hi Dee, hope Goldie is still doing well! RE the valium, at this point I dont' want her on ANY more medicine, one since she's doing better with the seizures but also she had such a hard time adjusting to all of these and we went through 4 different periods of what I call "weird" episodes (didn't have space to mention those, above) where she was up almost all night and totally whacked out I had asked the neuro about possibly a doggy prozac and he is hesitant as well, but did say possibly clomipramine..but I have the same reservations. Also, she gets canned punky 2 x day with the thyroid meds, yogurt with the others.

 

the only reason to do the MRI again is POSSIBLE more peace of mind if we do put her down. It's a LOT to put her through, again, and if nothing is found again, where are we at? worse than before, in some ways.

 

Oh how awful, I can't imagine Have you tried contacting Dr. Feeman or Dr. Couto...just from the 'greyhound' angle if nothing else. How odd that it only happens when/just after eating. Has your vet mentioned anything about that part? I know absolutely nothing about seizures but it just seems to me that it could have something to do with the act of eating. Maybe she doesn't get enough oxygen while she's eating? Have you tried all of the standard things, such as raising bowls, switching to ceramic or stainless (if plastic)? Have you tried hand feeding? I don't know...I just can't get past the fact that it's ONLY when/just after eating...just seems like there should be some kind of connection. Maybe switching food?

:grouphug

 

Dr. Couto could not help and I agree, it has to be related to eating but the neuro has never thought so. We tried everything to change it up. She was having seizures even after a tiny treat and even a small ice cube, so it's not time or how much. The pheno is the only thing that's really worked but the price is SO high

[Batmom]

Sent you a PM.

[Tallgreydogmom]

The pheno is the only thing that's really worked but the price is SO high

 

Is this phenobarb? I get mine at Wal-Mart. Have they tried Potassium Bromide? We have 3 with seizures, one takes the Potassium Bromide with one pill of phenobarb.

Edited March 1, 2011 by Tallgreydogmom

[greyhead]

She may have hyperthyroid symptoms mixed in there now. That thyroid dosage would be high for a big male, much less a girl. If you stopped giving it with yogurt, she may be OD-ing,, so to speak, on thyroid med. I'd back her off to the .6 level, without calcium sources. I would hope that would stop the aggression, but it's just a suggestion. Then you can reevaluate and see if the thyroid dose and even the pheno can be lowered further. All I know is that the thyroid level has to be right, and hers sounds high.

 

Lots of hugs to you and continuing good thoughts for Rainey's improvement.

Edited March 1, 2011 by greyhead

[MaryJane]

I'm so sorry that you are having such a tough time. Neurological issues are just so difficult to deal with especially with the personality changes that you have mentioned.

 

I might suggest checking the thyroid medicine - most times it should not be given with food. Depending on the brand, it might need to be given 1 to 2 hours before eating.

 

You might want to check with the vet about pills like Melatonin or tea like chamomile and whether it might help with calming down a bit.

[RaineysMom]

The pheno is the only thing that's really worked but the price is SO high

 

Is this phenobarb? I get mine at Wal-Mart. Have they tried Potassium Bromide? We have 3 with seizures, one takes the Potassium Bromide with one pill of phenobarb.

 

I wasn't very clear...I meant the price we're paying to have her seizure free is high, not the price of the pheno -- it's chicken feed compared to the price of the Keppra and Zonisamide! BIG bucks for those.

 

she cannot take PB as she has pancreatitus but thank you for your suggestion

[Guest IrskasMom]

I was reading through the entire Post and I am just baffeled . I have No Advice and Experience with seizures. I am sure the Option to consult with Dr.Cuto has been done or considered.That this little Girl is loved beyond explanation is clear to me. Whatever your Decision is in the best Interest for Rainey and you.

Keep us posted ,please.

[Guest Energy11]

She may have hyperthyroid symptoms mixed in there now. That thyroid dosage would be high for a big male, much less a girl. If you stopped giving it with yogurt, she may be OD-ing,, so to speak, on thyroid med. I'd back her off to the .6 level, without calcium sources. I would hope that would stop the aggression, but it's just a suggestion. Then you can reevaluate and see if the thyroid dose and even the pheno can be lowered further. All I know is that the thyroid level has to be right, and hers sounds high.

 

Lots of hugs to you and continuing good thoughts for Rainey's improvement.

 

I was thinking the same thing about that high a dose of thyroid supplementation. It COULD cause most of Rainey's symptoms! Goldie gets 0.6mg, ... 0.3 a.m. and 0.3 p.m. She is doing well with it.

 

Yes, may want to go back to the 0.6 for a few weeks, to see how that goes. Good Luck!

[RaineysMom]

She may have hyperthyroid symptoms mixed in there now. That thyroid dosage would be high for a big male, much less a girl. If you stopped giving it with yogurt, she may be OD-ing,, so to speak, on thyroid med. I'd back her off to the .6 level, without calcium sources. I would hope that would stop the aggression, but it's just a suggestion. Then you can reevaluate and see if the thyroid dose and even the pheno can be lowered further. All I know is that the thyroid level has to be right, and hers sounds high.

 

Lots of hugs to you and continuing good thoughts for Rainey's improvement.

 

the problem is, she was upped to the .9 for 11 days before this behavior came back and her behavior was not like this. She only started with REALLY bad behaviour and acted exactly the same way when we put her back on the pheno on 12/31 as she had back in Sept when put on the pheno initially. She had one thyroid test done in Dec, before the pheno, and it was still low, thus the up to .9. Since the thyroid meds DID have some benefits to stopping seizure frequency, I am hesitant to stop it or lower it at this point. If she hadn't acted the very same back in Sept when started on the pheno I would tend to agree with you more...but it's GOT to be the pheno

 

also -- the aggression started before she was ever on any level of thyroid meds

 

I'm so sorry that you are having such a tough time. Neurological issues are just so difficult to deal with especially with the personality changes that you have mentioned.

 

I might suggest checking the thyroid medicine - most times it should not be given with food. Depending on the brand, it might need to be given 1 to 2 hours before eating.

 

You might want to check with the vet about pills like Melatonin or tea like chamomile and whether it might help with calming down a bit.

 

I did ask the neuro and he said it was ok to give with food...so not sure... If anything, it would make the meds LESS effective as we're giving it, right? Plus I"d have to get up at 3am to give her the meds in that case

Edited March 1, 2011 by RaineysMom

[Batmom]

...but it's GOT to be the pheno

 

 

 

Not necessarily. Medications can interact in sometimes unpredictable ways. Take one med that makes the dog hungry and restless, add another med that makes the dog potentially aggressive, active, restless (and therefore hungry), and ..... eek.

[Guest mcsheltie]

Does her food have Rosemary in it? Big seizure trigger in some dogs. A lot of food is now using Rosemary as a preservative along with Vit E.

 

Is she truly hypo thyroid or is the medication being given in hopes it will help? That dose is enough to have a severe effect on personality.

[Guest Energy11]

Gosh ... it DOES seem like Rainey is EXTREMELY sensitive to the stinkin' Phenobarb!!!!!!!!!!!!

 

Goldie was a MESS on it, just a mess!!! She had glazed eyes, and wandered, and whined! IT WAS NOT my Goldie in there! IF, God Forbid, she ever needed anti-seizure meds again, I'd go for the KBr, but I know Rainey can't take it. ... I know when Goldie was on her very high dose of the Phenobarb, the Valium DID help to a degree. I totally understand you not wanting to add anything right now, but then again, maybe some type of sedative like the clomipramine, could give she, and you, relief.

 

I WISH I could take this all away, because, to an extent, I KNOW what this is like! We lived it for almost six weeks ... it WAS HEck!

[RaineysMom]

...but it's GOT to be the pheno

 

 

 

Not necessarily. Medications can interact in sometimes unpredictable ways. Take one med that makes the dog hungry and restless, add another med that makes the dog potentially aggressive, active, restless (and therefore hungry), and ..... eek.

 

I totally agree with you, Jey -- but since she acted EXACTLY the same way when first put on it before she was on any other meds -- and the same behavior started the next day after starting the pheno again -- that's why I say it has to be it. If she didn't act like this initially in September, I would think it's due to meds mixing bad -- but she did. Actually, if she hadn't acted like this back then, she'd still would have been on it the whole time. We stopped it back then because it was so bad. *sigh*

[Tallgreydogmom]

I just wanted to add that both our seizure greyhounds are on thyroid medicine. The male takes two tabs of .8 twice a day. The female takes one .8 twice a day. Without the thyroid meds their level tests 0

[3greys2cats]

I am so sorry to hear of Rainey's health problems how horrible to have the personality changes along w/the rest of her condition, my heart goes out to you. I have only experienced neuroligical problems once with my Sara and it was the worst year for us. We had an MRI and spinal done when Sara presented w/ataxia, truncal sway, seizures, could not walk. She was diagnosed w/ multifocal GME which is a type of meningitis, she had inflammation in several areas of her brain and spinal column, she was on pheno, prednisone, & cytarabine(cancer drug ,chemo) and 2 different antibiotics to start with before they got spinal results back and also pepcid, carafate for her stomach. She was crazy hungry all the time between the pred and pheno and would whine and pace and pant, she would pull snacks away from my 85 lb male, which is totally not her personality and she needed to pee every 2-3 hours and needed to be lifted up w/a harness up and down all the stairs until she could walk again w/out falling over, stessful would be an understatement. I think @ this point w/all you have been through, I would get another MRI, there could be something there that was missed. The poor baby is suffering and you all are too . I will keep you in my prayers

[greyhead]

I have to agree with the possibility that these meds are interacting in unfortunate ways.

 

Aggression can result from both too little thyroid hormone and from too much of it. Kind of like if you water a plant too much, it wilts, and if you water it too little, it wilts. If this were graphed, it would look like a U-shaped curve, with the vertical axis being amount of aggression and the horizontal axis being the amount of medicine given.

 

Also, it can take weeks for thyroid levels to stabilize on a given dose of medicine. So seeing improvement but not perfection at Week 2, for instance, doesn't mean that upping the dose a lot is going to make it better at Week 3. Too much hormone may now be in her system, which could make her worse than manic (so to speak), and the effect of the pheno just adds more discomfort and instability to that.

 

So it may well be the combo of too much of these things, and pheno may not be needed at all. Sorry I can't explain better than this, as I'm running out the door. I'm sure others can clarify what I mean for me if they agree, bless their hearts.

 

But please don't give up. I truly do believe there's a way out of this, and dialing back the thyroid med is Step One.

Edited March 2, 2011 by greyhead

[Remolacha]

what a nightmare for all of you I have no experience, so no useful advice, but I wanted to add that you are not a bad mom, and you are not failing her!!