Welcome

Welcome to my first blog!

I decided to write this blog as I have a Staffordshire Bull Terrier, Willow, who has been diagnosed with the condition L2HGA (Staffy Cramp). There is lots of information on search engines about the symptoms and how to get dogs tested for breeding purposes but not a lot of information about dogs living with the condition.

There are two variants, Luckily Willow has the less severe which consists of all the symptoms bar epileptic type fits. There is no treatment for Willow’s type other than monitoring her exercise, reducing anxiety & excitement levels. This is difficult as she is only a year old, full of beans and has a nervous disposition.

We also have a 5 year old Staffordshire Bull Terrier, Megan, who supports Willow. This is heartwarming as she slows down and supports Willow like a crutch when her legs get bad on a walk.

I am hoping that this blog will give people an insight into how an owner and dog live and cope with this condition.

I welcome comments on all my posts as long as they are informed and appropriate.
As we own two dogs from a very stigmatised breed I am a supporter of Ending BSL (Breed Specific Legislation) and showing how loving, loyal and wonderful these dogs are.

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28 Responses to Welcome

  1. Sherry B says:

    I am so glad you have started this blog and hope you will continue. I have a 9.5 year old Staffy with L2HGA. She is from one of the first litters officially diagnosed with the disease. I believe she was lucky #13 in diagnosis. I also believe she is the oldest living dog with L2HGA at this point. It is frustrating that there is not info on what to expect as old beloved pets age with L2HGA. My girl, Sera, has symptoms like your Willow, but did develop the seizures over time. Petit mal seizures starting at about age 4 – progressing in frequency and severity until she was having Gran mal seizures a few times a week (always at night while sleeping). I was ready to have her put down to prevent more suffering until I tried KBr for her seizures. She still has tremors sometimes and the fear and inability to exercise without stiffening, but has been seizure-free for 1.5 years now. It is just a disease you have to manage continually for your baby and give them the best of life while you can. 🙂

    • gemmawynne says:

      Sherry,

      Many thanks for taking the time to comment on this and I have taken comfort in knowing your little pooch is 9.5 years old! It seems that you have been able to manage Sera’s condition & you have some great advice. It seems that vets in our are are not aware of this condition and possible treatments for the seizures. Our precious vet put it down to a pulled muscle. I would really appreciate your advice with regard to certain things to prevent the cramping whilst exercising. The biggest factor at the moment for Willow seems to be the cold!

      Keep in touch!

      Gemma

      • Sherry B says:

        Gemma,
        You and anyone else who reads this who has a L2HGA affected pup is welcome to contact me at fraggle1023@yahoo.com. I will be glad to share all I know from our long road with the illness. I have never met a vet who was familiar with the illness in my area. Doctors in the UK know more, but now that there is a genetic indicator and the disease is supposedly one its way to be extinguished. I doubt any more research will be done. I have learned some over the years by rading studies of humans who have L2HGA. It is rare and mostly contained to a few families in the middle east, but humans can have it as well. As far as the exercise-induced stiffness and ataxia, I can not help much. I had to just learn Sera’s limits and stick within them. She can go for 30 minutes MAX walk. We stick to shorter periods of play a few times a day instead of long exercise. It will not get better with “endurance training” and muscle tone does decline with age. Let me know if I can help in any way. 🙂

      • Rachel Inchley says:

        Hi Gemma,
        I have recently lost my staffy ” Bailey” to L-2-HGA. He was dianosed in 2007 and had both genes (from mom and dad) i.e affected. This is the worst type. He managed to hang on in there until January 25th aged 11 and 3 months. It was a long hard struggle for us and I have written a book all about his life and living with L-2-HGA, to help other people in the same situation. Hope you get on OK with your staffy xxx

      • gemmawynne says:

        Rachel so sorry to hear that news. He got to a good age which gives me optimism for Willow. It would be great to have more information on your book xxxxx

    • Jp Williams says:

      Hi, i have a 11.5 year old female staffy, all her symptoms point to L2HGA, i am now in the process of doing my research, Its the first time i have heard of this disease, i was fully unaware when i bought my pup all those years ago. Any help in information and what i can do to help her would be greatly appreciated.

      • woochiemama says:

        Hi

        The best place to start for information is the Animal Health Trust website. http://www.aht.org.uk/cms-display/genetics_l2hga.html They conduct non-invasive tests for L2. You usually get the results within 2 weeks. Have you spoken to your vet about it? Some symptoms of the condition can be controlled with drugs, obviously, dependent on what the symptoms are. Some dogs can live with the condition without too much interruption to their daily lives. Also, keep her warm and make sure she has a place she can retreat to when she wants to. L2 dogs seem to like their own space now and then and many people keep covered crates nearby for their Staffs

        I don’t know if you have a Facebook account, but we also have a support page for owners of L2 dogs https://www.facebook.com/willowstaffieL2HGA/

        If you have any further questions though, please don’t hesitate to contact us

        Andrea

  2. AnneMeikle says:

    Just found your website.It was interesting reading comments from other people who have staffies with L2hga. My Kym is also 9.5yrs, she was diagnosed at 1yr but had no other symptoms other than a wobbly gait until she was 5yrs. Then every 5 or 6 weeks she had turns where she did not know where she was, howling, running off. sniffing nonstop etc; and appeared really distressed. Kym was sent to Glasgow Vet School for an MRI scan to ensure no other brain anomaly.This scan was clear and she was prescribed Epiphen tablets, which has controlled these episodes well. Kym likes a walk or run on the grass with her sisters but sometimes falls over or becomes too tired. Pavement walks are difficult as because of her strange gait her toenails are worn down too far and they bleed. Somedays her “walks” are in her dog pram! Kym is a darling wee dog who is loved dearly and has brought a lot of joy into my life. Hope I have her for some years yet, as long as she remains content and her condition stable. Lots of love to Willow, we are thinking of her.

  3. Hi Gemma,
    Sorry for the late reply chick. Only just noticed this blog I do apologize. Hope willow is coping well and hanging on in there. My book is called Bailey Living with L-2Hga and he has his own Facebook page now with details of where to buy the book etc. I do have copies at home , just let me know if you’d like a copy , I will sell you one at a reduced price of ten pounds instead of fifteen. I only get a small royalty amount per book , but it was never about the money for us. Its important that the message of L-2 is spread as far as possible and I have explained all the steps we took to help with his condition and the medication we found to help him . We still miss him very much and will do for a long long time , its great that willow is a good age too , most rarely make it to a good age. Let me know how you’re getting on with things chick. All the best for you and willow , lots of love Rachel and Bailey xxx

  4. Pauline Hamilton says:

    Hi,,, just ordered a DNA testing kit for our 2 year old staff boy Dexter. The vet was not convinced he had epilepsy due to his presentation and neither were we. We came accross L2-HGA and we feel that unfortunately this will be Dexter’s diagnosis. I have read Rachael’s Book about Bailey and cried, but Bailey sounds worse than Dexter. Dexter has been like this since six months old, and although his attacks are getting more frequent, they are not worsening. We do not know what is ahead for our boy but at least we know others now with a staff living with this condition. xx

  5. foxyandrews says:

    Our Foxy was recently diagnosed with L2-HGA, aged 3. We rescued her when she was about 14 months old and at first thought she perhaps suffered from Canine Stress Disorder as that also shows as stiff legs/bent back when over excited/exercised. However the MRI and blood test definitely show she has L2-HGA and, as a Staffie cross (with Whippett we think), she’s a bit of a one in a million.

    The symptons she displayed about 6 weeks ago was a return of the muscle stiffness but was also accompanied with heavy panting, bowing (almost like retching), staggering backwards, and a general look of panic on her face. This attack did knock her for six for a couple of weeks but she seems back to normal now (well, normal for Foxy ;-))

    She’s slow to learn but gets there in the end and is a happy, loving dog who we hope to keep with us for several more years. She is officially special in every way x

  6. Sherry Barrett says:

    So sorry to read Everyone’s stories here. I so wish that this disease would be eradicated. 😦 My girl, Sera, is 11.5 now. Her story is coming to an end. However, I have thought that I would have to let her go many times over the years, so who knows – maybe she will be with us longer than I think. I am sorry to say that the L2HGA seems to have created such neurological damage that she has terrible dementia these days. She seems to rarely know us and spends much of her time in her kennel, scared of most everything. L2HGA dogs do not handle change well, and it has intensified over the years. We can not leave her alone for more than a couple of hours at this point or the fear and confusion causes her to pace and hurt herself. But strangely, when we are with her, she does not seem to want us to comfort her. It can be heartbreaking.
    The biggest key to her longevity was controlling her seizures. She had mainly ataxia and mild retardation and some tremors until she was about 5. Then the Gran Mal seizures started. If you have a dog starting the seizures phase, please ask your vet to try Potassium Bromide therapy. It has kept my baby seizure-free for 5 years!
    The damage has led to her having significant pain in her hind quarters and back at this age. She takes painkillers daily, which I know will lead to kidney failure. But at this point, we are just trying to keep her comfortable. We will have to make the decision of quality of life soon.
    Having an L2HGA dog is not easy, but they are loving babies. Just know that there are others of us out there that understand how hard it is. I am here to answer questions for anyone who may want to know how they can expect the disease to progress as their baby ages. Sending hugs and kisses to all our affected pups.
    Sherry Barrett
    fraggle1023@yahoo.com

  7. bridget says:

    hi
    i have a staffy which has fits we have had him to the vets and he was put on tablets called pexion. he was getting two a day but all they did was make him sleep all day. so he was put on different tablets but also had to keep taking the first ones. they have never given me a name or anything for whot moats has. just say that he should only have one fit a month which is acceptable. but in the past seven days he has had two fits moats only three and i don’t want to think about putting him to sleep i just don’t know whot do and the more i read everyone else’s stories i just get more upset for the poor dogs.

    • woochiemama says:

      Hi
      Have your vets had him DNA tested through the animal health trust? Its a £60 blood test that will confirm if its L2 or not.

      If you’re on Facebook like our page & we have a vet & vet nurse that may be able to advice you better.
      http://WWW.l2hga.com

      Please keep in touch

      Gemma

  8. Johnbhoy says:

    Hi there sorry to hear about all the staffies with that condition my staffy buster just refuses to walk when I take him out sometimes any suggestions we could be walking and he digs in and wants to head back home mostly when he hears noisy car exhausts that apart he’s a great wee dog would be grateful if anyone could explain thanks johnny

    • woochiemama says:

      Hi Andrew. Sorry to hear of the problems Buster is having. There is more info on our L2HGA page including some videos that you might like to look at http://l2hga.com/ also, if you are on Facebook, we have info and posts from other L2 owners. Please feel free to join us on there…we have a vet on our team who can answer some of your questions, but obviously the first one is, what has your vet said about it? Hope to see you there

      https://www.facebook.com/L2HGACanine

      https://www.facebook.com/groups/l2hgacanine/

      • Johnbhoy says:

        Thanks for reply as buster is a rescue dog we have no history he is very scared of loud noises apart from that he’s a great wee staffy we are going to the vet tomorrow so will see what he says thanks again

  9. Sam says:

    Hi,

    I rescued my staffy, eventually called rocky (first thing he pricked his ears to!) from a building site around 8 years ago.

    He was always a bit “different”, but until recently just believed it was his character. He was around 2 or 3 when I found him, and already the biggest character around. Even back then, he had head shake seizures and cramp in his back legs after walks, but we found sugar brought him out of the head shakes and learned how to stretch and massage his back legs.

    He started escaping when I moved to our second home. Rocky was like Houdini re-incarnated, he started by pulling the cat flap from the back door and chewing his way out! He also suffered increasingly with panic attacks. I should note the kids on our street used to bring him home, basically he learned how to get past anything in his way, played out with the kids all day, then came home for tea! He developed arthritis at around 7, but only recently the L2 really affected him, causing him to fall over a lot, get confused etc. I spoke to my vet many times, but they told me they’d charge a fortune for tests, and had no treatment anyway.

    I stumbled across the AHT site and ordered a testing kit, but unfortunately, rocky had a severe episode on the 21st, causing extreme confusion, blindness, and basically meaning he was either in a permanent panic attack or so drugged up, he could barely move. I’m sure Rocky had L2, and do believe it’s possible, in some cases at least, to manage it with enough patience and understanding. I am shocked at how little knowledge vets have though.

    I had Rocky put to sleep on the 23rd, aged around 10 or 11. I just couldn’t stand to see him afraid and scared, and wasn’t prepared to keep him alive in a zombie like state.
    Rocky was too big a character for that, he counted 2 children, previously terrified of dogs, as friends. Was known around all 3 areas where we lived, and also in Cork, Ireland. Everyone who knew him loved him, it’s been an incredible 8 year adventure, but it’s heartbreaking how little knowledge there is of this condition. RIP “smelly” Rocky Roberts, you’ll be missed but never forgotten.

  10. John Donovan says:

    Hello, just read your blog about Willow having L2HGA. We have a one year old male staffie (Bane) Who has just been diagnosed with L2HGA. We are desperately trying to find out anything that can help with his condition. If there is any advice or pointers to vets with knowledge of this condition would be greatly appreciated. there is information on the web about the condition, but next to nothing about how to treat it. The vet who has diagnosed this has said we can expexct one to two years. Bane was diagnosed on Friday last. As said earlier if there is any advice you cangive it would be much welcome. Hope Willow is ok and still doing well.
    john

    • woochiemama says:

      Hi John

      Thanks for your comments.

      There is information on the L2HGA page that we worked on with vet Harvey Carruthers and on the Animal Health Trust website.

      Whilst it’s true that some Staffords may only live a couple of years, we are aware of some on the L2 Facebook page that have lived considerably longer and have been helped by various drugs although this is no guarantee.

      Sadly we lost Willow last year after a particularly bad day. The decision was made to help her on her way to Rainbow Bridge but thankfully we have this blog to remember her by and to try and help others in her name

      If there is anything else you need to know, please feel free to ask or if you are on Facebook, Willow also has a page on there called Willow the Wobbly Staffie

    • Sherry Barrett says:

      John! Have hope. My Sera was diagnosed at age 1, and we were told she had a maximum of 2 more years to live. She lived to be 11 and a half. It was not always easy to mitigate her symptoms and keep her calm and happy, but it was worth it. All you can do is treat symptoms. Sera took Potassium Bromide and valium with much success once her seizures started. Eventually her symptoms became too severe, and we chose to let her go, but she had a life full of love and adventure! And we miss her very much. Bane may have some trouble in life, but don’t we all? You may get to share many years together! 🙂
      Sherry Barrett
      fraggle1023@yahoo.com

  11. Demi Wright says:

    Hello. I have a 8 week old staffy named blue.. We got him on Friday such a lovely little boy and loves cuddles, was told tho by a vet hes younger then 8 weeks.. But that’s not the reason why I’m commenting.. Yesterday (Sunday) and today(Monday) 3 times all together he’s had little weird moments, unsteady on his feet, bit wobbly, but he stays in the same spot when it happens. His ears are back and he lifts his right leg up moving it up and down. That’s the best I can describe it. I’m worried but other than that he’s eating, drinking, playing, loving, just loves everybody. So I don’t know. Keep meaning to video it but when ever he has the moment like this morning I can’t find my phone x

    • woochiemama says:

      Hello Demi

      Thank you for your post. Apologies for the delay in replying.

      It could well be symptoms of L2 but obviously it’s not possible to diagnose this over the internet. You can get a testing kit from the Animal Health Trust that just involves you taking a swab from the inside of his cheek. (I think it’s about £50) and they will send you the results normally within a couple of weeks. It’s also worth discussing it with your vet

      We run a support group page on Facebook as well where other L2 sufferers share their stories. Please feel free to join us

      https://www.facebook.com/willowstaffieL2HGA/

      Andrea

  12. Natalie lobodzinski says:

    Can this make their head sore to touch aswell

    • woochiemama says:

      Hi Natalie

      Sorry for the delay in replying. I’m not aware of this but it could well happen. Have you discussed with your vet?

  13. Leeann Jackson says:

    Hello how is your dog now.

  14. Joanne says:

    Hi I am wondering if my boy Booth has this. He is almost 6 so it seems if he does its the milder version. He’s never had a fit that I know of. He’s just always been different? Struggled to toilet train, leg quivers if he’s at rest and you stroke him for instance on shoulder leg that leg will shoot in the air like you’ve scared him this can repeatedly happen and exercise can make this worse. An in house joke amongst friends is that he’s special needs, in fact for the first 2 years it was really hard and he only improved (dramatically) when we allowed to sleep in our bedroom with us. We have moved house recently and he didn’t tolerate this so well regressed slightly. I am wondering if Booth could be suffering from L2HGA and if it would be worth having him tested as his symptoms seem mild in comparison to others. Any advice would be appreciated, Thank you. Please don’t judge that we haven’t tried to have him diagnosed before this, I have and always had lifetime cover pet insurance. I have always thought this to be his disposition a slightly highly strung nervous dog and have always tolerated his somewhat odd behaviours.

    • Andrea says:

      Hi Joanne

      L2 would be my initial thought. Willow never had fits…she was very much, as you say, ‘different’. The change in your circumstances could well have triggered the condition again and I would say it is definitely worth having him tested. We would never judge. There are many reasons we can think of for our dog’s behaviour, often we just put it down to quirks and don’t think it could be a condition or something wrong with them. The test is very easy and non invasive. Just a swab taken from inside his cheek and sent back to the Animal Health Trust

      http://www.aht.org.uk/cms-display/genetics_l2hga.html

      There are some videos on our Facebook page that show how other sufferers present when under stress

      https://www.facebook.com/willowstaffieL2HGA/

      Please let us know how you get on

      Andrea

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