Fits

I posted a little about Gypsy in the new members section where someone suggested I post a bit more here. So here goes.
Gypsy is 7.  Just before her 7th birthday she had an incident that puzzled me and looking back I now recognise it as a mini fit. Basically she had sudden frothing at the mouth and looked very confused.  
At the beginning of August she had her first grand-mal - I took her to the vets and he did blood tests - nothing obvious from those.  She had another at the end of August so I started keeping a diary.  She then had her annual MOT and days later she had her fist cluster set.  4 fits in 22 hours. We went back to the vet and he gave her Pexion.  no fits since until today when she's had two (and I'm dreading another).  I phoned the vet who advised an increase in the Pexion - fingers crossed on that one.  
As I understand it - dogs usually start epilepsy between 1 and 5 years. Starting later as she has suggest something more sinister (I quote my vet here) and my biggest worry is that she has something like a brain tumour that's growing and causing the fits to increase - both in size and intensity. Today she hasn't really seemed right and it's taking hours for her to improve after each fit - by which I mean her balance is still dodgy up to 4 hours later.
Today my googling took me to a place that identifies Staffies as having a form of fit that has the same underlying abnormality as is found in some humans with epilepsy.
I love looking at all the pictures on this site and I thought it was time to join and cry "help" ! Is there anyone out there who understands all this?  
Many thanks

It is nothing I have experienced, what has a CT scan showed up?

Interesting question. My vet advises a scan would cost about £1200 and asks - what would I do with the information it gave me?
I like my vet - he's very practical and straight talking. Years ago he treated my mongrel terrier when she became terminally ill and I look back on that time with some feeling of reassurance for whatever Gypsy and I are facing next. His view is that there is some sort of brain lesion, possibly a tumour, and I'm pretty sure he would not recommend an invasive treatment. He also tells me dogs don't die of fits

When ruby started with her fits we were refered to a neurologist, he advised an MRI at the cost of £2000. He also asked us whether if a tumour was found could we afford the possible £3000 in surgery to remove. Our insurance limit was £2,500 and we couldn't afford to pay it so the decision was not to have the MRI but use the money more effectively. She was discharged from the neurologist on epiphen and steroids and the diagnosis of either epilepsy, tumour or meningitis. As it turned out she has L2HGA. Ruby's fits are controlled ATM by epiphen and potassium bromide can you discuss with your vet as to changingincreasing her meds?

No, dogs don't die of fits as long as there's somebody there to watch over them.

However, it is sometimes good to know what i causing them if at all possible.

Jane's Ruby has a genetic disorder prevelent in Staffords called L2-HGA which causes frequent fits without the medication. It's taken a few months to get the right dosage, but she seems to be there now. Take a look through her 'blog'...
https://staffy-bull-terrier.niceboard.com/t38570-l2hga

If your girl's fits sound anything like Ruby's, you might want to get test done. They're not expensive or invasive. If you want to, just let us know & we'll point you in the right direction.

I've read Jane's post and Ruby's history and I think there are some similarities.  The underlying cause is possibly different especially because Gypsy is older. My research, and indeed my vet, suggest something "more sinister" is going on. I'll spend some time researching the L2-HGA and ask the vet on Monday. Whatever the cause I fully understand how Jane must be feeling. The outcome is the same - there are fits and watching a dog fit is an awful experience.  
Gypsy has had 3 today - two were minor - and she's not at all settled.  She spends a lot of time "crying" usually she wants food (side effect of both drugs and fits is a raging appetite) and she's a real porker as a result. Today the vet has added a second drug into the cocktail - fingers crossed for an improvement.
I wish I could do more for her. 

Your vet may have no knowledge of L2-HGA. It's pretty much a Stafford thing, and unless he's pretty well up on breed specific he may never have heard of it.

L2 HGA is usually diagnosed at about 18months however ruby was diagnosed in April aged 5. Another lady (not on here) had her dog diagnosed at the age of 6/7. Like caryll said a lot of vets don't know about the disease so I guess some dogs that are un diagnosed and told its tumours etc could actually have L2 HGA. Even the neurologist we saw and had seen L2 HGA in other breeds didn't think it was that when I mentioned it.

I think the only way to be sure is to have the DNA test done.

True but I don't see the point - as I said in my reply on the other thread - the treatment is the same regardless of the cause.

I totally understand that, but if it were to come back as positive, at least you'd know that it wasn't a tumour?

I hope you can get gypsy calm and fit free tonight especially with the fireworks going off. I understand how you are feeling with the fits, it's heartbreaking to watch and the recovery time after is as bad. Ruby too is a porker now due to the steroids she was on and the epiphen. She moans for food and drinks gallons of water. We cant exercise her now due to the excitement bringing on fits.
Big hugs to you and gypsy x

I was the same, when the vet said it was either a tumour or epilepsy. I'd read up on l2 HGA and knew the prognosis was grim but still decided to have the test to put my mind at rest. At least I know what to expect.

The test isn't that expensive Morgaine and as has already been mentioned you would know it wasn't a tumour

I do understand why it's been suggested and I'm grateful. As I've said - I intend to speak to my vet about it on Monday - he has already done £90 worth of tests and may have covered this already. I really have my doubts that the symptoms described fit Gypsy - apart from the one obvious one.
If the test came back negative what would I do I wonder? I look forward to hearing more of Ruby's progress and I've got my fingers (and toes) crossed that she's more settled.
Sending hugs from both of us to both of you:(hug): 

The test is a mouth swab and you order from animal health trust £48. You order online, swab and send back. Results in approx week.

Morning Jane and thanks for that extra information.
How's Ruby today?
I'm happy that Gypsy had a peaceful night - she slept so soundly I was a bit scared to be honest because most of Gypsys grand-mals happen when she's asleep (that's another difference between the girls) but I think she was simply exhausted and she looks better today - even my son said so and he denied that she looked odd yesterday.  Of course there's no knowing how long this peace will last and I know you understand that.  I just hope you're getting a respite too  Sending hugs from Gypsy to Ruby      

I'm glad you all had a peaceful night and gypsy looks more settled. Ruby's plodding on a she does. I always have one eye on her when I'm at home, luckily my 3 teenagers are on different times at 6th form and college so there's always someone at home and now know what to do if she fits. Thankfully she isn't aggressive when she comes round as we had a lab x who we lost 2 years ago to seizures. He was aggressive on coming out of a fit which the vet said was probably a brain tumour.
Big hugs to you and gypsy from me and ruby

Whatever you decide about the test I hope you can stabilize Gypsy with the right meds  xx

Do keep us updated x

Hopefully daisy will settle with the meds, big hugs all round

Hopefully gypsy will settle with the meds, big hugs all round

Spoke to the vet this morning. He's well aware of L2-HGA which didn't surprise me because he had told me he's recently attended a refresher session for vets treating dog seizures.
Gypsy is very sleepy and the vet said this is common in the first couple of days after starting Epiphen. We have an appointment on Wednesday to discuss next steps.

Today's appointment went well with a positive plan to work on the meds and stabilising things so Gypsy isn't fitting (or only fitting occasionally) and also not quite such a zombie.
He's very well informed on fitting having recently undertaken updated training on the subject. He favours trying to get off the epiphen by increasing the pexion to near it's max daily dosage and I'm happy with that. I've researched both drugs and epiphen has more potential for side effects and long term issues. So it's fingers crossed time while I spend the next two weeks carefully tweaking the doses. Wish me luck

Good luck

Fingers crossed

How's Gypsy getting on with her meds? Hugs to you both

Hi Jane and Ruby.
Gypsy has been fit free for one week.  We've been here before though and I think 5 weeks was the longest.  At the moment Gypsy is on 2 thirds the max dose of Pexion and a reducing amount of Epiphen which the vet wants to try to remove entirely - I think to have it available for a fall back in the longer term.  Obviously I'm pleased at the lack of fits.  Gypsy always fits in the wee small hours and I'm awake every day now regardless.  Any day time fits she has had have always been the second and third in a cluster.  I'm afraid Gypsy barely resembles my dog any more - clingy, moochy eternally hungry and disinclined to take a walk with me. I'm hoping this is down to the Epiphen - another reason to try to remove it.
I'm sorry that Ruby had another fit yesterday.  Did your vet comment that it's common for fitting to occur monthly? I have a colleague who's lab fits every 4 weeks - almost to the clock. My vet thinks monthly fits would be acceptable - it's these clusters that he doesn't like.  
I really hate living like this - I feel like all I'm doing is waiting for the next fit to happen.  I think you will understand that?  
Glad you're on the mend - take care  

I understand completely. ruby seems to go 3 weeks fit free. We were the same trying to reduce epiphen and we managed to reduce to two tablets. But every 3 weeks she fits so it's one back up to full dosage of 4. That's the reason we put on potassium bromide as well, however we can't get the epiphen down at all. Ruby is the same as Gypsy, not the same dog. To think in march we had a typical staffy and by April she was a shadow of herself.
I sat and had a cry yesterday at the unfairness of it

Sorry to hear about Gypsy, but (you may not like this) I'd advise you to get a second opinion from another vet. Your current vet can attend all of the refresher courses available, but he/she is not giving you entirely accurate or useful advice. For a start, a good vet will always want to diagnose and hopefully treat the underlying cause of the seizure, which involves making note of any potential poisoning, hallucinogens and head injuries, followed by urine and blood tests to rule out a number of causes. If none of these tests prove conclusive, further tests and scans may be carried out.

I can get my head around a vet just prescribing a generic treatment for a dog who only fits, say, once per year, but for cluster fits and grand mals going on for longer than a few weeks, it just isn't suitable and your vet is doing you an injustice by leading you to believe that it is. It's all very well treating a seizure with generic treatment, but the seizure is a symptom, not a cause, so whatever is causing the seizures needs to be pinpointed.

I really do think that, for Gypsy's sake, it would be worth your while to get a second opinion.

Good luck to you both!

I have complete faith in my vet - used him for years. I think it's the way I put things across that is making you so suspicious.
I seem to have managed to cross swords with at least 3 people on this forum and I wonder if I should simply leave ......

Please understand that I wasn't attacking you in any way. Perhaps signals were crossed, but my criticisms were of the advice of your vet, not of you. Whether or not you choose to seek a second opinion is entirely up to you and what you feel is necessary.

Please don't leave the forum, people on here are passionate about staffies and have a wealth of knowledge. plus you understand what I'm going throu and vice versa x

Jane:) I use other forums of a similar type to this one (for breast cancer which I had in 2006) and those forums allow the use of personal messages.  I'd love to be in touch with you. My sons partner is from Sheffield and I know the city a bit so I have a sort of double empathy with you.  
I'd love to know more about  Ruby and if her fits are clusters and has your vet suggested Pexion????
Is there any way we can speak outside of here?  
I do understand how passionate Staffy owners are - ask me about my friend Neil at some point ...... Gypsy is my third Staffy - they do steal your heart don't they
I feel very much of what you are going through - even the time frames are similar - don't lose heart and do keep trying.         

I'm not sure if there's a way to do instant chat, I'm on my phone most of the time so tomorrow night when PC is free of teenagers I'll look on the main site.
Jane and ruby

There's no pm facility on this forum. Neither does Steve encourage posting email addresses etc.

Jane and Morgaine - there is a chat room on this site. Never used, but it is there .....

Thanks Lynda - I'd spotted that but when I click into it it says I'm disconnected. I've been trying to find some guidance on how to use it - without success yet. I'll keep looking.
How's Ruby today Jane?

Morgaine wrote:Thanks Lynda - I'd spotted that but when I click into it it says I'm disconnected.  I've been trying to find some guidance on how to use it - without success yet.  I'll keep looking.
How's Ruby today Jane?

When you click on chat room, you'll see 'log in' in the top right hand corner of the screen. 

 
Thanks - it was just too obvious for me to see it ......

She's snoring on settee as I got home, not woke up yet! Not even smelling the cheese and crackers I'm munching.

I hesitate to post this - feels like I'm tempting fate but ......over a week without Epiphen and no fits. Gypsy is still not the dog I had a year ago but she is better and more like herself and a lot of the changes in her "could" be put down to her age. At 7 (and a half) she's not old but still a senior.
I don't believe for one minute that she's cured but I'm very happy to have some of my hugs and walks back . Fingers crossed the Pexion will give us more happy times

Good news Morgaine  

Fingers crossed for gypsy x glad she's a bit more herself... Here's to many more fit free times ahead

Good news indeed. I hope she continues to improve. 

hope it continues

Thank you - so do I

I really wish I hadn't posted my update - defo tempted fate there 3 fits today and I expect more. Removing the Epiphen by increasing the Pexion was supposed to give me the chance to add a shot of Epiphen to prevent one fit becoming a cluster and it hasn't worked.
I'm back to the point where I'm thinking each phase is worse than the last and it the pattern stays true (about 4 weeks apart) I'm in for a miserable xmas ......

Which Vets are you with?

Oh, that's so sad. Poor Gypsy. 

Poor gypsy. How gradual was the epiphen reduced? Can the vet give you rectal diazepam tubes as a back up for when she's fitting? We were offered them with ruby. Big hugs for a quiet evening for you both x