View Full Version : New website on episodic falling syndrome
31st May 2005, 04:06 AM
Includes a video of a dog with the condition:
31st May 2005, 04:23 PM
The video absolutely broke my heart!! My heartfelt prayers for those of you out there dealing with this. It must just crush your heart.
31st May 2005, 05:19 PM
Penny meets the conditions for the Extremely Affected. The long version video could be her. We have our ups and downs. We had a relatively symptom free period of time, and now she is back to having several episodes per day. We have started her on phenobarbitol, along with the clonazapam, but so far, we are not seeing too much improvement. Lately she is taking longer and longer to come out of the attacks. Afterwards she is just drained and spends most of her time in my mother's lap. She almost never wants to play anymore, as a play session often initiates an attack. I sometimes wonder if I am doing her any favors by prolonging her life. It is a delimna that tears my heart apart, as I love her to distraction. Molly, my healthy Cavalier, is also being affected, as most of my free time is spent taking care of Penny and giving my mom some relief from the constant daily care she must give to Penny while I am at work. Molly no longer gets her long daily walks with me, and must settle for a quick trot around the block instead. She is becoming sadder every day, and I wonder if dogs can suffer from depression. My fiance and I took Molly along with us this weekend for a three day camping trip, leaving Penny home with Mom. Molly perked up by the second day, and by the day we headed for home, she was her former joyful self. Then we got home, and by that evening, she was laying on the sofa, looking at me with mournful eyes, while I held Penny, and gave Mom some much needed respite. My beautiful Penny did not ask to be born with this condition, and she is completely innocent, but it is really tearing our little family apart. Keep us all in your prayers as we struggle to find an answer.
31st May 2005, 06:21 PM
Oh Donna, it breaks my heart to read this and Penny, Molly and all of you are in my thoughts. The dogs are so innocent and we can't explain anything to them; that makes it extra hard to watch them in pain. I know how special Penny is to you. From your description this sounds so close to families who have a member with an extreme disability; you feel you are taking time sometimes from other family members and the drain is very real on your energy and emotions.
I sure hope her meds can be adjusted to give her a happier situation and to bring some relief to you as well. I didn't realise this could be so extreme; I guess like a lot of things you hear a mix of reports and until you are in contact with someone who has a dog going through this or have one yourself you just can't comprehend what it can be like.
1st June 2005, 02:03 AM
Donna - your story just breaks my heart. I can only imagine how torn you feel. Poor Penny needs your attention yet at the same time you don't want to neglect Molly. What do you do??!! I'm so sorry you are having to go through this. Are the episodes painful? Is she in discomfort after them? It tears me up to imagine you watching her go through this. Please know that you are seriously and deeply in my prayers and thoughts.
1st June 2005, 10:00 AM
Watching the video was simply heartbreaking. What a very brave and couragegeous thing to do and it really brought it home to me raising awareness of this condition.
Donna I hope the medication can be adjusted for Penny and ease her pain. Words are never adequate at times like these, but you are in my thoughts and prayers.
3rd June 2005, 10:57 AM
I am so sorry that Penny isn't responding well to the medication. It does take a while to get into the system and also to adjust it to the right level. Have you tried Diazepam ? sometimes one drug works better than another and not all of these dogs respond in the same way.
I used to put my Gracie in a baby sling and carry her when I took the others out. When she got too big I had a shopping trolley on wheels that she used to sit in. Yes I probably looked an idiot but I really didn't care. At least she could go with us that way. Gracie had multiple episodes per day but they did become less frequent as she got a bit older. It is probably more distressing for you watching her.
I would put her somewhere quiet and try to restrict her movement for an hour or so after each episode, to give her chance to really calm down.
I wish there was more I could do to help you.
Please contact me any time or Dorothie , she would love to hear from you.Details are on the website.
3rd June 2005, 05:22 PM
Oh Donna I'm so sorry to hear how severely affected your Penny is - I too didn't realise how badly affected some of these poor wee souls are.
I know how much it impacts on other family members - it's very sad for Molly that she isn't getting as much exercise and attention, and you are feeling very torn. Is there anyone who could take Molly for a walk for you, so that she is more tired?
I do hope that Penny's medication can be adjusted and that she can be better.
Sending healing thoughts and prayers for you all.
4th June 2005, 06:04 AM
Penny meets the conditions for the Extremely Affected. The long version video could be her. We have our ups and downs. We had a relatively symptom free period of time, and now she is back to having several episodes per day. Donna
Donna = I'm so sorry to hear that Penny is regressing some. I hope you are able to modify the drugs to help her. Have you considered seeing a holistic veterinarian? I would be happy to refer you to someone my mother sees. He does phone consultations and has worked miracles. His ideas are pretty out there, but he has done some amazing stuff. He may have some alternate ideas for treating Penny.
Isn't your dog a ruby, too?/ How weird that you have a ruby named Penny with EFS, too.... :? Same name as the ruby dog in the video.
4th June 2005, 05:07 PM
I remember someone who knew about this condition advising someone on another list or board (fuzzy about the details; it was probably 18 months ago now) that often these attacks lessen as the dog gets older, as Barbara has said -- so fingers crossed this this will be the case for Penny too.
6th June 2005, 09:27 PM
To update you all on my Penny, she has had about three good days in a row. No attacks at all on Friday or Saturday and only one on Sunday. She was starting to exhibit the signs of coming into season, so I talked with my vet and we decided to do her spay. She is there right now and they should be just about starting. On the way into the vet this morning, she had a pretty severe attack, brought on by the stress of leaving her warm, comfy bed and her snuggly "sister", Molly so early in the morning. But my vet says that this condition should not add to the inherent dangers of anesthesia, so we are going ahead with it. I am also having her micro-chipped at the same time, I guess I am being optimistic that we will be able to keep her with us, and am proceeding as though she will have a long life with us. If only wishing could make it so. Keep us all in your prayers. I'll let you all know how her surgery comes out and how she recovers. Normally my vet wants to keep post surgical dogs in his hospital overnight, but we are going to bring our baby home this evening. I think it will be less stressful for her to be at home than at the hospital. Hopefully this is the correct decision. I'll update you all soon.
7th June 2005, 01:47 AM
I had an email from a lady who contacted me some months ago. They were on the point of having their very sverely affected dog pts. She got her vet to contact Jacques Penderis and he allowed them to have the name of the drug they are trialling. The little lad is doing extremely well on it.
I don't have an email for Jacques at the moment but he is at the university of Glasgow UK and their phone number is +44(0)141-3302000.Maybe your vet would speak to him. I cannot give the name of this drug as it is still being trialled but Jacques will speak to your vet.
I hope that Penny is recovering well tonight.
7th June 2005, 03:03 AM
Donna - sending lots of loving and warm thoughts your way. With my trials and tribulations of late I always think of you and can't imagine what you are going through. Be strong.
7th June 2005, 08:38 PM
Penny is doing pretty well, post surgery. Yesterday, her very strict medication schedule was completely disrupted, due to the surgery, and she did not receive two of her doses of Clonazapam. So, of course, she is suffering attacks today. Maybe it is wishful thinking on my part, but they do not seem quite as severe or as lengthy as they were a week ago. Our vet increased her doses of Clonazapam based on her weight yesterday, so I can give her up to 13 mg per day. She has been getting 8 mg per day, evenly spaced in four doses. She is pretty stressed out as she is having to wear a circular collar so she cannot chew her stitches, so I think this is adding to the attacks. But I swear, she seems happier, and so does my beautiful Molly. We had a pretty bad thunderstorm last week. It frightened both of my babies, and surprisingly, instead of insisting on being held in my lap or my mothers, which is their ususal behaviour, they sought out each other. They ended up in the big puppy bed, snuggled together and sound asleep. And since then, it seems they are both more content. Molly sniffed Penny all over when I brought her home from the vet and had to lick nearly all of her fur, before she smelled right to her again. Hopefully I will have more good news to report as Penny completes her recovery. Barb: I will let my vet know the phone number for Dr. Penderis. Maybe that will be our last resort, if she starts to deterioriate again. Thank you all for your thoughts and prayers. Thank God for all you wonderful people.
7th June 2005, 09:32 PM
So glad to hear Penny is doing better. Hopefully it's not wishful thinking that you are seeing a change...maybe it is for real!
10th June 2005, 12:47 AM
So very pleased that Penny is recovering well. It may be helpful to give her Vitamin E. I know of a couple of people that use it and say they feel it does make a difference. There has been some research into how it works but it's a bit long winded for these posts. You give a teaspoonful per day.Might be worth a try.
Give Penny and Molly a big hug. Hang in there. I know it's hard but with luck the meds will start to make a difference.
15th June 2005, 08:20 PM
Well, it is NOT my imagination, or wishful thinking. My Penny is doing better. She has not had an attack in a week. I even bathed her and used a hair dryer to dry her off, and she did not have an attack. She is romping and playing again, although she is still displaying some weakness in her rear legs. I do not know if this is due to the very large doses of Clonazapam and Phenobarbitol she is getting, or if it is due to the fact that she has had so little physical activity in her young life, that her muscles are simply weaker than they should be. We have started on a program of light to moderate exercise to try and strengthen them. She does not know this is an exercise program, she just thinks it is a fun game to chase me around the back yard. We are taking her camping this weekend, for the first time. I know that Molly will be so happy to have her along, as they both miss each other so much when we take Molly and leave Penny with my mother. I do have a question. Penny is lagging behind on her training, both in the housebreaking area and in general obedience. I freely admit that this is mostly my fault, as I just did not have the heart to scold her when she was so sick, and I was not sure I would be able to keep her. So she has some pretty ingrained bad habits now. My mother is of the opinion that she is unteachable. I do not share this viewpoint, but the techniques I used while training Molly do not seem to be working with Penny. Are there any of you who have housebroken and trained to basic obedience older or rescue dogs who might have some suggestions and pointers for me. Penny has a favorite place in the living room to do her business, and no matter how many times I take her out, or clean the area, she invariably goes back to that spot to relieve herself, usually just after I bring her inside. I scold her, and put her in her crate, but she is now running from me whenever I scold her as she knows she is going to be crated. I want her to view her crate as a good place, not a place of punishment. Anyway, any advice would be appreciated.
16th June 2005, 01:56 AM
Donna - Wow, I am so happy it was not just your imagination. I can't tell you how happy I was reading your post that your Penny is doing so much better. I think of her often.
I really don't believe she is unteachable. My only suggestion would be go back to basics. Don't let her be unattended in the house. A sharp "no" the very second you catch her starting to go and immediately take her outside. Major praise and treats when she does go outside. I can't help but feel she is still smelling something where she has been going even though you are cleaning. What are you cleaning with? I use my bissell spot remover to soak up the pee and then liberally dose the area with Nature's Miracle. I mean, I soak the carpet!! We had a guest dog at the house and after he left the pups kept going to a particular area in the living room and doing some serious sniffing. I finally put my nose to the carpet and realized he had peed there. Once I treated the area, they completely left it alone.
As far as the crate...definitely do not put her in there for punishment. Her crate should be her "happy and safe" place, not a no-no place. If you notice that she is going inside right after you bring her in, keep a real close eye on her so you can catch her in the act and interrupt her.
Of course, this is all stuff I did when the pups were young. I really don't have any suggestions for a rescue or older dog. But, mostly what I have heard is to go back to the basics.
Again, I am just so incredibly thrilled that she is doing so well.
24th June 2005, 05:09 PM
Hello everyone. Sad news to report. Penny has regressed to a state which is even worse than she has ever been before. The difference this time is she is at the maximum dose of Clonazapam and we cannot increase it any further. She is also starting to exhibit signs of other neurological damage, most likely due to the length of the attacks and the severity of them. She is having difficulty walking, even when she is not in the midst of, or recovering from, an episode. Often, she is just dragging her rear legs, and using her front ones to "scoot" along the floor. She has an odd sort of "tilted to one side" stance, and has started posturing during and immediatley following the episodes. She is also regressing in her housebreaking, and sometimes seems completely unaware that she is losing urine. During one very severe attack, she defecated as well. I have an appointment with my vet later today, but he is of the opinion that we really need to end her suffering. The emotional roller coaster we have been living on is very hard for all of us. I love this little girl to death, and I have a responsibility to her to see that she is not suffering. Please say some prayers. I think today is probably the day.
24th June 2005, 05:27 PM
Oh, I am so sorry to hear this news. :cry: All my thoughts will be towards you, your family, and Penny today. I know what a nightmare this has been and you have done everything in your power to help this little girl. Please know that you did all the right things. Sometimes, in the end, the best thing for our loved furbabies is the hardest thing of all. :cry:
24th June 2005, 06:50 PM
My little girl is at the Rainbow Bridge. She went peacefully, surrounded and held by the people who loved her. This roller coaster is over. Thank all of you for your prayers, good thoughts and best wishes. You have been a source of comfort during this ordeal.
24th June 2005, 08:38 PM
I am so very sorry for your loss Donna. Poor little Penny. I am just crying buckets as I write this. I can't imagine the pain you are in and how hard it was for you to make this decision. Poor little thing just isn't suffering anymore. As I read your post that she was worse than ever I couldn't help but think that maybe it was time to send her on to a better place. Please know you are in my thoughts and prayers.
Love and warm comforting thoughts
24th June 2005, 08:46 PM
I respect your decision and your thoughts on how your responsibility lies on doing what's best for Penny. Despite this, I'm sure it was such a difficult decision, and my thoughts and prayers are with you and your family.
25th June 2005, 02:56 AM
Oh Donna, I'm so sorry to hear this after she had seemed to be improving. You have been through such a lot and it is terrible to watch them knowing they are having pain. It took a special kind of courage and love to make the decision you did, to give her peace.
25th June 2005, 05:18 PM
Donna I am so terribly sorry to hear this news. I am so sorry that we were unable to help you and Penny. She is at peace now, you did all you could.
8th July 2005, 06:16 PM
Donna, I'm so sorry, I've only just seen this post.
We are so very sorry that your darling Penny had to have her wings. You were very brave to let her go - it is the one final loving act that we are able to carry out for our beloved companions.
I hope that you are comforted by the thought that Penny will be free of suffering and pain, and running and playing happily at the Bridge with our other Angels.
You are in our thoughts and prayers.
9th July 2005, 12:21 AM
Donna, I've only just seen this post too. I am so sorry about your little Penny.
I've just read through about how you thought she was making steps towards recovery and then suddenly she went back down again - this sometimes happens with humans too. It's almost as if an angel was watching down on you both and said 'Lets let them have some happy times to remember before we give her her wings'.
It's not really any re-assurance but I think you've done the best thing for her. I don't think any of us would want our babies to suffer in pain when nothing could be done for them. :cry:
Penny will be waiting for you at the bridge and playing with all the other angel furbabies until that day. Time is nothing at Rainbow Bridge.
Take care and big hugs to you
Donna & Maxxy
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