Introducing Phrynie (Fry-Knee)

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PhryniesMom
Posts: 3
Joined: Fri Jun 14, 2019 10:26 am

Introducing Phrynie (Fry-Knee)

Post by PhryniesMom » Mon Aug 05, 2019 4:21 pm

Hi, my name is Beth. I rescued a chihuahua/miniature poodle/bulldog mix In January of 2018. She had just given birth to a litter of puppies and was estimated to be about a year old. She was a real challenge, having never been housebroken or trained in any way, and she was terrified of my husband. But she was so sweet and gentle, and absolutely the cutest little thing, and we fell completely in love. Over time, she bonded well with both of us and made great strides in her training. (we have two other dogs and I'm sure that helped.)
About a year ago, she had her first seizure. After an exam, the vet suggested we wait and see. Another seizure followed about six weeks later, and she went on phenobarbital.
Things went well for about three months, and then she had another major seizure, so the vet added Zonisamide. There was a brief pause, then the seizures continued. She was now having cluster seizures every month. They added Keppra, and it seemed to help for a while, but then the seizures came back with a vengeance. We had to hospitalize her three times for clusters.
At her last hospitalization, we talked about putting her to sleep. The seizures were coming every two weeks, always in clusters. Between seizures, she had good days and not-so-good days, with odd behaviors and bathroom accidents. The vet asked if we wanted to try potassium bromide. He said, if this doesn't work, we really are running out of options.
The potassium bromide really zonks her out, but it does seem to be helping. She had a couple of very, very brief seizures, and we were really hoping we were out of the woods. But then she had a major seizure again, and our vet increased her Keppra.
At this point, we feel we are probably just buying time. She has seizures every two weeks. We've decided we will put her to sleep if and when she has another cluster and needs to be hospitalized.
I joined this forum largely because I am feeling so guilty. We've joined GoodRx, which has greatly reduced the cost of her meds, but it is still between $50-$100 a month. But I think the hardest part is that we are all pretty stressed out. I hate to leave her alone, and at any rate, she needs medication three times a day. We rarely go anywhere for more than a couple of hours. I feel like a horrible person for considering euthanasia, but I feel like it is kinder than leaving her alone to die of a seizure, and I just don't know if my nerves can stand much more. Is there anyone else out there who feels this way?
Last edited by PhryniesMom on Sun Aug 11, 2019 5:51 pm, edited 1 time in total.

SpencerBhumi
Posts: 226
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Introducing Phrynie (Fry-Knee)

Post by SpencerBhumi » Sun Aug 11, 2019 7:37 am

Hi Beth,

Welcome to the forum although I am sorry you need to be here.

This is a heart breaking disease (frustrating, infuriating, grievous and more).

I’m not sure where you are at with your options, and in your story you say you commenced potassium first up and (as I read it) then considered potassium later. We started on Phenobarb (I don’t see that you have mentioned that you are yet using pheno) and we trialed most other drugs, settling on a pheno potassium combination. Spencer would fit every two to three weeks but we developed an aggressive anti-cluster regimen to administer after any first fit. This way we had the usual frequent seizures but few episodes went on to cluster.

The commencement period of potassium had Spencer in a zonked out spaceworld but he did settled out eventually. Our aggressive anti cluster left him groggy for a few days but I felt this was better than worsening post ictal episodes and the chance of clusters and status.

Guilt. Grief. Stress. I believe we all have this but I strongly believe you have no reason to feel guilt. You have rescued your dog and you are persevering through untold grief and immeasurable stress to care for your dog.

My greatest grief was managing the severe post ictal episodes. My longest grief was knowing the transformation of a ‘normal’ dog to a ‘drugged down’ epi-dog – but this did not stop Spencer having his beautiful personality, living a healthy life, enjoying our usual previous adventures (all-be-them more cautious) and being the ever faithful and loving dog that he always was.

Sadly we could not stay home all day so Spencer would have frequent times on his own (with his mother dog around). If he had shown signs of seizure activity whilst we were out we would watch & act accordingly. In our seven epi-years he had only three episodes where I think he could have gone through significant cluster to potential status, so over time I had less stress at having to leave him unattended. I could not manage medication three times a day in our lifestyle so we were fixed with strict 12 hourly doses.

My stress and grief breakthrough was when we developed the aggressive anti cluster medication regimen. This reduced his post ictal dramas, reduced his hospitalisations, reduced my expenditure and it eased our lifestyle. My wife & 8yo daughter worked with the plan and it became a part of our family care for Spencer.

We did all stress and we did all grieve but we did also all get on with caring as best we could. And there is nobody can judge you as being anything other than a good epi-dog carer, managing as best you can under very grievous and difficult circumstances. There is no judgement; you just do the best you can.

What I learnt and what I would encourage you do is to just be patient and understanding with your dog and give her all the love and care you can, and receive all the love your faithful dog is already giving you. We had far many more good days than bad days and I hope you too can get to this point.

Please keep us informed of your progress.

I will keep you in my prayers.

Regards, Trevor.

In memory of Spencer 7-12-2005 – 22-8-2017

PhryniesMom
Posts: 3
Joined: Fri Jun 14, 2019 10:26 am

Re: Introducing Phrynie (Fry-Knee)

Post by PhryniesMom » Sun Aug 11, 2019 6:15 pm

Hi Trevor,
Thank you so much for your reply. When I talk about Phrynie with other dog parents, they really don't understand what this is like. It has made me feel very isolated, so I appreciate hearing from someone who has gone through this and knows how it feels.
I misspoke about the potassium bromide. The first drug Phrynie took was phenobarbital, and she still takes that, as well as Zonisamide, potassium bromide and Keppra.
I see that you were able to leave Spencer alone and go about your lives. Because we are retired, I can be home with Phrynie much of the time, which is both good and bad. I'm trying to work on just going out and living my normal life, and accepting that she may be gone one of these days when I get home. It's not easy but i'm trying.
It looks like you had Spencer for many years. Were you able to take trips away/vacations? Did he continue to have seizures every 2-3 weeks for the entire seven years? Phrynie goes anywhere from 10-20 days, but until the potassium bromide, she almost always had cluster seizures, and we would wind up taking her to the vet for hospitalization. Since the potassium bromide, she hasn't had a major cluster, but she has only been on it about 6 weeks. Fingers crossed.
Our vet is very positive and upbeat, but she has also prepared us for the possibility that Phrynie will never have her seizures under control, and the day may come when she goes into status. We're really just watching and waiting right now.
Thanks again for getting in touch.
Beth

SpencerBhumi
Posts: 226
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Introducing Phrynie (Fry-Knee)

Post by SpencerBhumi » Mon Aug 12, 2019 7:14 pm

Hi Beth,

Spencer was an English Springer Spaniel. At 4 years old he had his first (witnessed/known) fit. And so began our journey through this disease for a further seven years.

After his second fit we commenced pheno and upped & upped the doses. We trialed Zonisamide (this worked for a while but it soon became a non-effective but very expensive waste), and Keppra (which I could not effectively manage 8 hourly). We added Potassium Bromide and upped & upped the dose. We eventually settled on high doses of pheno & KBrom. Spencer would fit roughly two to four weekly and the best clear run was seven weeks fit free.

The early years, until reaching our stable regimen, had several very expensive hospital stays. The pheno made Spencer diabolically hungry. On two occasions he ate stuff which set him back for weeks. Other events just went unexplained. I did not identify any firm triggers but I suspected commercial dog treats, stealing excessive cat food, flea treatments, and everything else that I became paranoid about thinking it might cause fits. Day light savings & seasonal weather changes coincided significantly with seizure episodes.

I well understand that one fit can kindle more fits and a cluster can lead to status but I was never concerned that one or two fits would kill spencer. My grief was managing his post ictal confusion – his self-damaging confusion, blind running, anxiety & immediate quest to eat anything once awake. Quite early on, I came to realise that watching a grand mal seizure did not worry me. It grieved & saddened me but it gave me time to prepare for the inevitable post ictal adventure to follow.

We established our aggressive fit management plan. This was a dose (or two) of valium and a 3 day course of high dose of Keppra (sometimes extended another 3 days as required). This system worked and for the remaining years our vet consults were 6 monthly maintenance visits rather than costly hospital stays.

Holidays… we camped and travelled a lot (beaches/lakes, swimming, hiking etc.) taking both dogs with us and as long as we were cautious in managing Spencer’s medication routine and him not stealing foreign foods he was good anywhere. I was fortunate then to have my mum and a work colleague willing and able to look after Spencer when we took a couple of OS holidays. We had an established feeding/snacking list, a clear medication regimen and a clear ‘fit plan’ to manage any events. I would also research what vets were available at our holiday destination.

I made an emergency kit which we carried if going anywhere inconveniently far from home: A one week dose of regular medication in case of natural disaster or dispensing delay. Liquid valium & syringe/lube/gloves for extreme emergency rectal administration (cluster or status events). Valium tablets and Keppra tablets for administration as soon as Spencer was awake enough to eat (eating was always his first quest upon waking from a fit). A clear algorithm instruction sheet for other carers. The vet’s contact details. A tablet cutter & a tablet crusher in case I needed to crush some valium tablets to insert that rectally. All of this was packed in a kit, with a mini travel esky ready to go. I wrote earlier that watching a seizure did not worry me. As long as Spencer’s airway (& body) was safe, I had time to gather my emergency box, watch him carefully and plan my preparation of the emergency valium (seldom needed), and prepare my use of the recovery valium & Keppra (always given post seizure!).

I also had a red plastic medical alert dog tag made, which he always wore (along with his original puppy name tag):
CANINE EPILEPSY
Pheno XXXmg.
KBrom XXXmg
8am & 8pm (engraved on one side)
SPENCER SURNAME
Phone: my number
Phone: vets number (engrave on the other side).

And so we went on living with, but not ruled by, idiopathic canine epilepsy for seven years – we lived a new kind of normal life. Unfortunately Spencer died of an unrelated condition, but peacefully in the care of our fantastic vet. Spencer lived to nearly 12 years old.

I hope you can gather some hope from our story that canine epilepsy does not have to rule your life. I hope you will gain much confidence in managing any crisis and be able to move forward and enjoy the many more good days than bad days. Be patient with Phrynie because there will probably be times where she is brain addled to your maximum frustration but underneath it is that same ol' loving faithful dog that you loved enough to rescue and are now choosing to fight on for. Please share your progress with us.

Regards, Trevor.

In memory of Spencer
7-12-2005 – 22-8-2017

PhryniesMom
Posts: 3
Joined: Fri Jun 14, 2019 10:26 am

Re: Introducing Phrynie (Fry-Knee)

Post by PhryniesMom » Wed Aug 14, 2019 6:51 am

Hi Tevor,
You have been so helpful to me. Thank you so much!
As far as triggers go, I do know to avoid salty foods and certain flea and tick medicines. Stress is definitely a factor for Phrynie. She gets very stressed by strangers coming into the house. Noise and hubbub don't seem to bother her, as long as she knows everyone.
We are giving her the new Purina Neuroscience diet, along with her usual Science Diet canned food and treats. I can't say that I've seen any connection between food and seizures.
Phrynie has a more pronounced pre-ictal phase. In the day or two before, she becomes extremely anxious, following us everywhere, and she has accidents in the house. She will run about wildly sniffing and scratching the carpet, sometimes for an hour or more. Other times she will stand with her head against a wall. Most of her early seizures occurred at night, although I have noticed as time goes on, they can occur almost any time of the day or night.
Her post-octal is less stressful for us. She is often blind for a while, so we have to be careful and watch her. We have a gate on our stairs after she stumbled over to them one time and almost fell. She will do a lot of running about and sniffing things, as if she is re-orienting herself. She is often very thirsty, but hunger is not an issue. As my husband describes it, she is like a computer, with lots of glitches until she "reboots," and then she seems better.
We do have a seizure-alert tag on her, although we rarely take her anywhere. We've got a big, fenced-in yard for the dogs so they can run and play. I've given up trying to walk three dogs!
I don't see us getting away from dosing her four times a day. The Keppra seems to be helping her a lot. Like you, I feel like the Zonisamide is pretty ineffective (and expensive), and if we get to a reasonable point with her seizures, I will ask the vet about taking her off it. Right now, I don't dare change anything. Our progress is so uncertain. But it does make it hard for us to do very much. We have to take her to my daughter's house if we're going to be gone for a dose. Going away for more than a day is just out of the question right now. Maybe once things are under better control, we can leave her with my daughter for a couple of days .
Our vet did give us an emergency dose of midazolam, in case she clusters at night, so we don't have to drive her to the (extremely expensive) emergency vet. It has to be given nasally. I haven't had to use it yet. Her last two clusters were daytime, and we took her to our regular vet and they put her on an IV. The cost for this during the day is very reasonable, and frankly, a lot less stressful for us.
It's been a year now, and I'm getting better at this, but I still have a lot to learn about controlling my own stress.
Today is two weeks since her last seizure, which was very mild. One month since her last cluster. I'm feeling hopeful.
Beth

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