New and feeling helpless

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Anna
Posts: 3
Joined: Tue Oct 17, 2006 11:37 pm
Location: USA, New Jersey (East Coast)

New and feeling helpless

Post by Anna » Wed Oct 18, 2006 1:02 am

Hello All,

I am new to this and am feeling extremely depressed, and scared for my dog. My dog had his first seizure May of this year, 2006. One month after he turned four years old. Since he recently started having seizures, this is the space between his grand mal seizures.

1st seizure May 24
2nd - 27 days later, 32 days, 40 days, 15 days, 17 days, and last night 10 days.

From his first day he was put on 3 ml of Potassium bromide.
He is not improving, in fact the seizures are increasing in frequency. He is due for his levels. I need to take him in. I didn�t rush him in when the increase in frequency occurred because I wanted to see what his pattern would be. Plus, they�ll just up his level of meds. That appears to be the protocol of the practice I am at.

I don�t want to drug up my dog. As of right now, my feelings are he�ll never experience Phenobarbital. I just can�t do it to him. He�s on 3 ml of Potassium bromide, and at times he looks drugged!!!! And his back end has been slipping out from underneath him. Every time it happens I feel my heart sink.

Last night, the last thing I said to my husband was, � Tanner is going to have a seizure� and sure enough he did. What tipped me off was he was seeking solitude. Not as interested in interacting. The thing that is scaring the me to death right now is, I feel he is going to have another one tonight. It�s 3 am and I can�t sleep.

I wish I had the money to do a brain scan. But I don�t. I don�t know if I should stick with the practice I am at which is pretty reputable, or take him to UPEN. I just don�t know how much more expensive UPEN will be.

Does any one know about Jean Dodds? Has any one sent their dog's blood to her?

I feel so helpless. And I am scared to death that I am not going to have him for much longer in my life. This is the way I feel, that �life� is going to screw me and I am going to loose my dog at an early age.

I don�t know what to do.
Anna

suejacksoncarr
Posts: 172
Joined: Wed Jul 12, 2006 2:02 am
Location: London

Post by suejacksoncarr » Wed Oct 18, 2006 1:31 am

Hello Anna, sorry that you have joined us.

It is really frightening isn't it?

We have all been there and there is actually light at the end of the tunnel, even though you can't see it at the time.

However you will see that KBR causes the kind of side effects you are describing, but it does get better when the body gets used to the drugs, KBR takes quite some time (up to four months) to get into the system properly and be effective.

Most of the dogs on this site are on a combinations of KBR and PB. The PB has more of an immediate effect, and the side effects are not as horrific as you seem to think, if the dog is monitored regularly.

Personally I would say put Tanner on PB. The dosage can be lowered when he is stable to see how much is his absolute minimum of both PB and KBR.

My dog has now been seizure free (TOUCH WOOD) since end of April, and even though he takes quite high dosages of both drugs his quality of life is good.

There are also people on this site who have great knowledge of Jean Dodds - we have to wait for U.S.A. to wake up!!!!

Don't give up please, I definitely nearly gave up a couple of times but at the moment life is good for Scholtz, which means life is good for us too (except for Vets Bills!!!!!!!!!!!!!!!!!!!)

Stick with it

Sue
Scholtz - German Shepherd
10th June, 2004 to 9th March, 2007

Anna
Posts: 3
Joined: Tue Oct 17, 2006 11:37 pm
Location: USA, New Jersey (East Coast)

New and feeling helpless

Post by Anna » Wed Oct 18, 2006 2:29 am

Thanks Sue,

I really appreciate the response. I can't say at this time that I will put him on the Phenobarbital. Although that may change when we visit the ver. It�s just that every one I know that has their dog on the Phenobarbital are still experiencing seizures. Why give it to my dog?

Please, for those people who have their dog on it, I don�t want anyone to feel offended by what I am saying. It�s just that as of right now, I feel like it�s the worst thing I can do to my dog. A controlled substance! That scares me. I�m sure you have been where I am. I know no one wants to give their dog a controlled substance. But for now, I just feel like he would have to be clustering before I can dope him up. And maybe I wouldn�t be so against it if I hadn�t see the side effects of the Potassium bromide.

By the way...which is which? KBR vs. PB?

You know what really scares me? When I read the postings about a dog that didn�t make it. All these questions flood through my mind. What age was he, when did he start, how frequently, what level of meds? I wonder, hoping that it won�t be anything like Tanner�s pattern/story.

You mean the rest of the US isn�t up too? I�m in the US and it�s 4 am. I can�t sleep. If Tanner even so much as scratches, moves position, or burps, I startle and I check to make sure it�s not a seizure.

Sue, any one who sais it gets easier to deal with the more they have seizures - is DEAD WRONG. The more he experiences them the more depressed I get after each episode. I just feel this sinking feeling, like this is what is going to kill him. Sorry to sound like the voice of Doom and Gloom.

I may have no choice but to try Phenobarbital. I really don�t want to though. It didn�t work for any of my friends dogs. Another few more months of this and I AM GOING TO NEED MEDS!

Wow! Seizure free since April, God Bless him! I wish you the best with Scholtz, and that he never experiences another seizure again! That is so good. I really hope Tanner turns in to one of those stories where he is seizure free for months.

I just don�t get it. What is up with this starting at four years of age?!!!! What is up with that? I swear if he moves one more time tonight, some one is going to have to peel me off the ceiling. It startles the be-gee-bees out of me! Well, It's 4:27 am, If he's had one it usually happens by now. He dose them early in the morning. Mostly after mid night and before 5am. Talk soon. ;-)


Thanks & Best Wishes,
Anna

suejacksoncarr
Posts: 172
Joined: Wed Jul 12, 2006 2:02 am
Location: London

Post by suejacksoncarr » Wed Oct 18, 2006 4:10 am

Anna,

KBR is Potassium Bromide, and PB is Phenobarb.

Scholtz did cluster which is why he is on such a high level of medication, as we put it up his condition seemed to get worse and keep pace with each increase. After the first few siezures he had clusters every six weeks practically to the day, and usually ended up in hospital. Although he has not had a seizure since April our Vet says its almost certain that he will have more, but if he has one odd one every few months then she thinks that is an acceptable level. Its like human epileptics, its never cured, only controlled.

Scholtz was only 15 months old when he started.

We also use valium as an emergency measure when he 'clusters' to try and prevent further seizures - maybe ask your Vet for some for YOU as well!!!!!!!!!!!!!!! (But I wouldn't receommend the rectal valium for human use!!!!!!!!!!!!)

My vet also says that most (and I know not all) seizures take place between wake and sleep when the brain is susceptible (can't spell that) to irregular activity, maybe thats why Tanner does them during the night. Scholtz mostly used to start around midnight.

What kind of a dog is Tanner?? I know 'cos Scholtz is big and its really violent when he does have seizures that the neighbours must wonder what on earth is going on!!!

I'm sorry but I do think you must also consider which would you rather - Tanner continuing to have seizures or trying him on PB?? Humans take it, and as I said I understand that if everything is checked regularly then its not as dangerous as its made out to be.


Its funny, with the time difference other people in American are usually on line during my early morning when their dogs are ill during the night!!

Wait till later, 'cos there are very knowledgable people who will reply to you with good suggestions and responses.

Stick with is!!!!!!!!!!!

Sue
Scholtz - German Shepherd
10th June, 2004 to 9th March, 2007

Dylans Dad
Posts: 490
Joined: Sun Oct 08, 2006 5:12 am
Location: SE Iowa
Contact:

Post by Dylans Dad » Wed Oct 18, 2006 5:07 am

Hi Anna.
Dylan is on pb. and I`m very worried about the doseage. but he is no longer acting dopey. it takes awhile, but they get back to being able to walk and lift their leg. he has started being able to catch his frisbee again. he is not on any bromides at this time. he clusters alot. he had 13 in 2 1/2 days. I do know what you mean about being jumpy. poor guy stretches,I leap outta my chair an head for the freezer. have you read about the ice pack? I didn`t beleive it when I read it. but it cuts his seizures from a couple min. down to just a few seconds.we keep one in a cooler by the bed.
Wags & Slurps
Debby & Dylan
6 yr old Border collie
1st aug 7 2006
last 7-18-08
375 MG kbr twice a day
1 47.5 pb twice a day

skrpio
Posts: 1143
Joined: Sun Sep 25, 2005 5:34 pm
Location: Auckland , New Zealand

Post by skrpio » Wed Oct 18, 2006 1:18 pm

Hi Anna and welcome to our site.
Firstly I would like to say that the reputation that PB has it not warrented and that I got from Jean Dodds herself. I was fortunate to be able to speak to her at a lecture I attended. I too was stressing out about my dog being on PB and how I wanted to change over to KBr, but she insisted that if KiKi was doing alright on PB to keep her on it and keep monitoring her through blood tests. Many dogs have no problem at all with PB and lead very long lives. KiKi has been on a high dose (400mg/day) of it for nearly a year now and her liver it not showing any signs of decay nor is she doped up. As all dogs go, they experience a certain amount of doping when they are first given the meds but this is normal and it does not take long for them to come right when the meds are at the correct level.
Because your dog was put straight onto KBr it will take time for the drug to reach theraputic level and that is why most vets put them on PB first as it is a quicker acting drug. The PB is exactly the same drug as given to humans - not a canine use only drug. I was told if the meds at least halved the amout of seizures it was treated as a success.
As for his age - get him tested for thyroid problems. I suggest this as it seems many epi-dogs also have thyroid problems and by curing this it may stop the seizures. Your vet will not agree with this as they think Jean Dodds puts everything down to hypothyroidism but the fact is that she has been researching this disease for longer than most of these vets have been alive. Go through LINKS to the epi Guardian Angels page, table of contents and diagnostic testing at the top of the page for testing proceedures.
I have battled with seizures for a long time and it wasn't until I attended this lecture ( I went there to here about her ideas on seizures) that I realized that what she was saying about thyroids was exactly what my dog showed. She suggested to me to send my dogs samples over to her for testing (after having a battle with my vet on this one) and sure enough KiKi had extremely low thyroid results. She is now on Thyroxine and is doing really well - like she was 2 1/2 years ago before all of this happened. Her PB is now done to half her dose and still no seizures. TOUCH WOOD !!! These blood tests results come back to you really fast and with recommendations to your vet as to what treatment should be given. You also get the results faxed to you so you know what is going on.
I would also suggest you check out any tick, flea and heartworm treatments you might have given and also annual vaccinations or a change in food. Once again your vet will say that these do not cause seizures - but they do especially the ones with PLUS in their name.
As for the scan - it is an individual choice but for those on this site that have had it done they have all had negative results.
On the epi Gaurdian Angels site there is also an icepack treatment and those who have tried this have found it works really well in either stopping the seizure or cutting the duration down. Give it a try - it cannot hurt.
The one thing you need to do is calm down. I know it is hard but we have all gone through what you are going through now. I am a firm beleiver that if you are stressed it will pass onto your dog and it won't do him any good. We are here for you with a shoulder to cry on and and outlet for you to rant if you so feel like it. Cyber hugs and all. We have all cried and ranted and back when I really felt that all was going to fall down around me I had the wonderful support of those here to keep me going. As many will tell you - you can talk to you friends etc but if they have not experienced the horrors of seizures they do not understand what you are going through. WE DO - and we are here for you and Tanner.
If you want to check out Jean Dodds she can be contacted at hemopet@hotmail.com and also has numerours web sites. Type in Jean Dodds in search and see how many come up.
Keep in touch.
Jane
In loving memory of my special KiKi Bean
Seizure free forever now
Nov 25th 2002 - Nov 1st 2006
Dogue De Bordeaux

snozzel
Posts: 59
Joined: Sun Sep 11, 2005 11:26 pm
Location: hong kong

Post by snozzel » Thu Oct 19, 2006 6:00 pm

Hi Anna
Really feel for you at this moment. It is a hard thing to go through. One thing I want to add to what the others have said is that if your dog has epilepsy you will probably not lose him. It is very likely he will continue to have a long and happy life and there are still loads of good times ahead! It's not a death sentence (tho is does feel like it sometimes!). It will take a while to get his meds sorted out and during that time he may exibit signs of being 'druged' but he will get over this. He's still very young.
My personal experience of PB was very good and my dog at 13 continues on. He's had epilepsy for many years. In fact things started to get shakey when I introduced KBr but it was a necessity in the end and I have to endure wobbliness to reduce his fits.
Wishing you the best of luck to help you through this tough time. Please try not to let it get to you, look at the positive side and enjoy the good times!
Cheers, Sarah

Dylans Dad
Posts: 490
Joined: Sun Oct 08, 2006 5:12 am
Location: SE Iowa
Contact:

Post by Dylans Dad » Fri Oct 20, 2006 4:50 am

Hi anna, just wanted to see how things were going
Wags & Slurps
Debby & Dylan
6 yr old Border collie
1st aug 7 2006
last 7-18-08
375 MG kbr twice a day
1 47.5 pb twice a day

Anna
Posts: 3
Joined: Tue Oct 17, 2006 11:37 pm
Location: USA, New Jersey (East Coast)

New and feeling helpless

Post by Anna » Wed Oct 25, 2006 10:50 pm

Hello All,

I am so grateful you have all written me and I am so sorry that I haven�t been on again since. The day after my first post I was recovering from lack of sleep and from being depressed. I swear it took like three days. I had a massive migraine the next day and was over tiered and didn�t sleep that night either. So it took a while to get back to normal. Than also, winter is approaching and my husband and I built a goat house (I own pygmy goats), and we spent several days painting, running electric and water lines, etc, So that�s why I was missing in action.

Tanner has not had another seizure since. I do have a visit with my veterinarian tomorrow (Thursday 10/26) It�s time to test his blood levels to see how much of the KBR he�s retaining. (Thanks Sue ;-) KBr) hehe Oh and for the person who asked, Tanner is an Australian Shepherd.

I spoke to a good friend of mine (in tears) who also had a dog that suffered from seizures for quite a few years. She made a really good suggestion. That I see her dog�s Neurologist at the University of Pennsylvania (a.k.a. UPEN) She said that it would do me a lot of good because of where I was at with this emotionally. Getting a second opinion from a Veterinarian who Specializes in this area would give me a better understanding of what is going on with Tanner. That he knows how to physically test �Tanner� to see how �Tanner� responds, to reliably determine wether he possibly has a lesion or not. In the back of my mind, I have to wonder. But deep down I know that Tanner�s epileptic. But to talk with him regarding everything from Meds, Seizures, Diet, what ever. I feel that this is a good thing to do. This way, now I have �Tanner� set up with a good Neurologist.

Of course the Veterinarian she recommended is teaching at the University the next two months and is unavailable until January of 2007. But I really respect my friends opinion and if she sais this is the doctor to go see, that is what I plan to do. So in the mean time I will run the blood levels, talk to my general practitioner vet about the decrease in time span between seizures, and let him know that I plan to see the Neurologist at UPEN. It�ll be good to do it this way, talking to Tanner�s vet first and letting him know what I intend to do. �Cause I will still need to work with my Vet on this because he is only 45 minutes away Vs. UPEN 2 hours away. I know my vet, and his really professional and won�t have a problem with it.

My friend who made the recommendation is a chemist for DOW Chemical, in the area where they develop substances and chemicals that are put in the foods that we eat. Yikes! You know when you read the ingredients on a box and it�s meaningless to you? She knows them all, sooo cool! She was extremely beneficial in going over the ingredients on the back of the dog food I was providing �Tanner� and how certain chemicals would effect how his body would retain the KBr. Well, since �Tanner� had his first seizure, I now cook for my dogs. And just to let you know, my friend eats nothing that comes out of a box or can! Makes you say �Hmmmmm�

I do have to tell you all this. Last night, another night of no sleep. I know, I know. But once in a while he does this episode of really shallow, really fast breathing. Really lasts a LONG while. A lot of twitching and kicking legs. So every time he did this, I would rub him and wake him up. That�s one of my tactic to prevent a seizure from occurring. Interrupting it before it starts. He never had one. No I don�t REALLY think that stroking him and waking him up prevented him from having one, but who knows?

This is turning in to a novel! So sorry. I�ll let you know what the vet said tomorrow. I hope I didn�t loose some of you for waiting so long to respond!

suejacksoncarr
Posts: 172
Joined: Wed Jul 12, 2006 2:02 am
Location: London

Post by suejacksoncarr » Thu Oct 26, 2006 1:59 am

Anna,

I'm glad things are a bit more normal, it was good to read your post.

You have to realise that whatever the root cause, epilepsy is with you forever, so you cannot lead the rest of Tanners life as a nervous wreck!!!!
(That's why I suggested to our Vet that she prescribe Vallium for Scholtz and for me!!!)

No, of course it doesn't actually get any easier, but if you are dealing with this illness then you just have to get on and deal with it, as you are doing.


Let us know the outcome of Tanners visit to the vet.

Wishing you well

Sue
Scholtz - German Shepherd
10th June, 2004 to 9th March, 2007

Carolyn
Posts: 440
Joined: Thu Feb 16, 2006 12:08 pm
Location: Long Island, NY

Post by Carolyn » Thu Oct 26, 2006 8:06 am

Hi Anna, welcome to our world. Please hang in there. None of us want to put our babies on drugs but the siezures are worse than the drugs. We have all been in your shoes & truely understand how you feel. November 30th will be me & Kiya's 1 year anniversary OH BOY, it has been a heck of a learning experience. My only wish aside from never having to deal with this, is that I wish I found this site sooner than I did. Without the help & support of everyone here I don't know what the last year would have been like.
Do yourself a favor & take that deep breath calm down, I know it's not easy but your dog picks up on your vibes, you must remain calm for Tanner.
Kiya was started on the combo of pb & kbr right from the start to stop her cluster, now we are almost off the pb.
Good luck.
Carolyn
Kiya 11yr Shiloh Shepherd
PB 60mg am 90mg pm, 1teas kbr 1200mg, turmeric paste
1000mg milkthistle bid
First seizure 11/27/05
Last seizure 5/21/15

lovemypups
Posts: 438
Joined: Mon Aug 22, 2005 9:08 pm
Location: KY

Post by lovemypups » Thu Oct 26, 2006 7:04 pm

Hi Anna,
Welcome to our group. It is never easy when we have to witness our pets experiencing a seizure and as most have said, it is very frightening as well as upsetting. We all have been exactly where you are at, not sleeping at night, listening to every move they make, crying as they are in the throes of a grand mal and feeling totally helpless. The most important thing to remember is "we are here for each other". Everyone on here has their own experiences to share with one another and we are always learning from one another. We begin to understand that what may work for one dog, may not work for another. Never give up though. I know we have all been down that road where you sometimes wonder if this will ever end. The answer unfortunatly, is no. Good control is what we all strive for. Some of our pups are able to acheive that quicker and better than others. There are those few who are able in time to wean their pets to lower dosages of meds. and to those we congratulate and hope our pets will also be that fortunate. A large portion of us have started our pets on PB or KBr in the beginning, hoping for good results, but as most on here have stated, a very large percentage of our pets are on PB and KBr and have very good results with that combination. It does take a while for the medications to get into their systems, and whenever PB is mentioned, as Jane has stated, it does get a bad rap. I think the thing to remember, with the PB, it gets into their systems much faster than the KBr and it really does seem to help an enormous amount of pets control their seizures. Keeping up with our pets blood work is very, very important. KBr has also helped an enormous amount of pets, it does take much longer though. The chance of PB damaging your pets liver, if blood work is performed regularly (to monitor if damage does begin) is very slim. I hope this will help you should you decide to add PB and best wishes to you and Tanner.
Please keep us posted.
Debbie
Casey epi since 05/10/05 PB. 67 mg BID, KBr. 700 mg. SID and Callie is non epi sister. (both mini aussies)

Jodi
Posts: 15
Joined: Mon Oct 23, 2006 7:57 am
Location: Wisconsin

Post by Jodi » Sat Oct 28, 2006 2:44 pm

Hi Anna,
I jsut want to tell you about Jordan's success story on PB. She had her 1st seizure at age 4. Was tested and went on PB. Made it 5 years seizure free. She had about 2 weeks of what we call "loopy", but after that you couldn't tell she was taking a controlled substance. After 5 years she had one here and there, but pretty far in between. This week was the worst of it she had 5 in 28 hours. We've started her on KBr as well as the PB and we're at 5 days free. Knock on wood. If you want a long and happy life with your dog, do what it takes to keep the epilepsy under control. They'll love you even more for it.
I have a question for someone, I've been reading here and there about ice packs, where to you apply them and when?
Jodi & Jordan 10 1/2 year old GSD.
1st seizure Feb. 11, 2000
last seizure Oct. 23, 2006
1 1/2 Gr. Phenobarb 3 tablets/day
1 asprin every other day
.6 mg Soloxine 2 tabs per day
5 mg pred. 1 tab per day
antibiotics as needed

Dylans Dad
Posts: 490
Joined: Sun Oct 08, 2006 5:12 am
Location: SE Iowa
Contact:

Post by Dylans Dad » Sat Oct 28, 2006 6:14 pm

how is tanner?
Wags & Slurps
Debby & Dylan
6 yr old Border collie
1st aug 7 2006
last 7-18-08
375 MG kbr twice a day
1 47.5 pb twice a day

Finndog
Posts: 739
Joined: Thu Jun 16, 2005 1:07 pm
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Contact:

Post by Finndog » Tue Oct 31, 2006 2:13 pm

Ana, fortunately, you arae very close to the RED BANK ANIMAL HOSPITAL, 732-747-3636 Go see dr. Glass, he is very knowledgeable. I wouldn't do an MRI, so don't worry. There are several tests you can do first. Regarding the PB, I was so against it but now I see that Finn and the VAST majority of dogs experience no health issues from it. The combo of KBr and Pb is very good and statistically, your dog is much better off on both. The added benefit is that the Pb will take affect much quicker and offer control now, the KBr as you now know will take at least 2-3 months if not more to hit an effective range. In the mean time, you are going to have to be much stronger. Your dog needs you, they feed off your emotions so when you are depressed and stressed, they know it and react to it. Hang in there, hug your pup, complain and cry here- (we all do!) but be strong for your dog.
Finn, Irish setter
First Seizure 2/2/05
Last Seizure, 10/27/06
Lost my boy on 12/10/08

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