Progression Survey 2014

We are working in conjunction with Dr Clare Rusbridge, one of the Veterinary Neurologists who first recognized Lafora like symptoms in Mini Wires to gather more information about the onset and progression of the condition, and the level of veterinary knowledge,/awareness, an area of particular concern given the very low diagnosis rate in affected dogs identified by the first survey conducted in 2012. To take part, please complete the new LAFORA SURVEY for each of your dogs that may be or is definitely affected. You will also be asked whether you would be prepared to complete the survey again in periodically, which will be invaluable in monitoring and identifying progression patterns. Thank you so much in anticipation. PLEASE NOTE, ONLY COMPLETE THIS SURVEY IF:

  1. YOU ARE IN THE UK OR YOUR DOG IS FROM UK BREEDING
  2. YOU HAVE A CONFIRMED DNA TESTED RESULT SHOWN ON THE WHDC DATABASE OR:
  3. YOUR DOG HAS BEEN TESTED BY ANOTHER PROVEN RELIABLE DNA TEST
  4. OR: YOUR DOG FITS CATEGORY 1, IS A MINI WIRE, NOT TESTED BUT SHOWING DEFNITE SYMPTOMS OF LAFORA

If your dog falls into either category 3 or 4, we will be in touch to ask for further details. Your information is vital to help inform the research but may not be used for some data analysis.  IF YOU ARE NOT UK BASED BUT WOULD LIKE MORE INFORMATION OR TO GET INVOLVED, PLEASE CONTACT laforadogs@btinternet.com.

This is an ongoing piece of work to monitor the age of onset and differing rates of progression of Lafora Disease, which means that results may change, but from questionnaires completed up to 30th November 2013:

  1. The only WHDC tested Affected dogs that are showing no symptoms are all younger than 5. In other words, it appears that ALL affected dogs will develop symptoms at some stage.
  2. Average age of onset for ALL dogs is 7.
  3. Youngest age of onset WHDC TESTED dog is 2.5 (next youngest 4.5).
  4. Oldest age of onset WHDC Tested dog is 9.

10 Responses to “Progression Survey 2014”

  1. our little miniture dacshund is 5 we think she has lefora but she has no fits but can hardley walk we have been to the vets she panics when picked up jerking of the head this has come on in the last 10 months .not all vets no about lefora .i no there is no cure and if her walking was good we would have her tested .our vet is going to try her on a drug last result it could be a brain tumour but we cant put her through that, so we have the awful decision about her quality of life . we have her parents names i believe they are infected .kind regards
    pamela

  2. hi Pamela, please provide more information and I’ll try to do what I can to help. What variety of miniature dachshund is she? (smooth, long hair, wire)

  3. Alison Chilton says:

    Hi, my MWHD aged 7 has Laforas, he’s not had any physical tests but he was showing the classic myoclonic jerking which started last year only very mild when he approached any long grass but because I didn’t know about the disease I stupidly thought his long hair and eyebrows were the cause so gave him a trim. The jerking got worse so we saw a vet who referred him to a neurologist. We had videoed the myoclonus jerking and as we thought he did offer to help us obtain a blood test via Canada and advised we could have biopsies done but to be honest from the research I had done on the net we knew and he knew what it was. He now has seizures and has a slight tremor in his back legs but he still has a good quality of life but I am constantly looking at his diet. I think he needs a low GI diet and I believe Orijen is one of the best foods but I cannot always get it so he is currently on Acana which is made by the makers of Orijen. He also has tinned Mackerel in oil with it and once a day he has Omega 3 fish oil. I am constantly looking to reduce his seizures which are occurring every fortnight and he is on Levetiracetam and Gabapentin which fortunately do not have any side effects. I have heard good things about something called Nuroplex from AllergicPet.com but they were all on the website so I have yet to hear direct from anyone who has tried it. This is a terrible affliction on a beloved pet and I feel like I want to approach other owners and warn them but obviously it would alarm them, I wish someone had warned me about it and what to look for I would have sought medication at the first signs of the myoclonic jerking. I would welcome any advice/tips suggestions from others dealing with Laforas.

  4. Hi, Alison, I’ve emailed you direct but in the meantime, I hope you don’t mind me sharing your message on the website, as it demonstrates so clearly not only the impact of this terrible condition on both the pet and the owner, but also confirms the importance of ensuring that prospective pet owners are aware of Lafora and know the right questions to ask of breeders and when to walk away (when they know nothing of it, dismiss it as unimportant or knowingly breed affected or carrier dogs to either other affected, carrier or unknown status dogs).

    I’ll keep in touch as we are about to revise the progression survey to include further questions. if you know the breeder of your dog or the names or location of any of the siblings, it would be well worthwhile notifying them of your concerns and conviction that your dog has Lafora.

    Good luck.

  5. Carol Mitchell says:

    I have a very kind-natured Mini wire haired bitch, now 4 and a half years old and tested for Lafora when she was three. She proved affected since which we traced back to her grand sire as he has other affected animals attributed to him. She is a lovely little dog and has shown successfully and produced a litter before I had her tested. Last summer I found her sitting screaming one day , as I thought in pain. I took her to the vet immediately and she was x-rayed and given a complete examination – they could find nothing. Then just last week in the middle of the night she again woke me with hysterical screaming, no twitching or movement just sitting screaming with wild wild eyes. I went to comfort her and she went to bite me. She was sore to the touch anywhere and couldn’t bear for me to go anywhere near her. Eventually I soothed her and she went to sleep but her mind was away with the fairies the next day. She wouldn’t eat or drink , just slept in a quiet corner. The next day she seemed more together and I took her out with the others into the garden. I turned my back for a minute and she was gone. This little dog who never left my side even on walks when the others would take off. About ten minutes later a gentleman appeared asking if I had a little dog as he had seen her on the road and had turned her up the drive. She had mindlessly taken off and headed down a drive where she had never gone before and worse ended up on the main road where she could have been killed or caused an accident. We shouted for about 40 mins and eventually she appeared very confused and not sure even who I was, no waggy tail. I took her back to the house and she spent the rest of the day sleeping in her bed. The following day she was more herself and did drink and that night ate a little. A week on and she is her old self again but I now know that this will happen again and probably much worse. Even more worrying is the fact that it might happen when I am not with her. People and perhaps even my grandchildren who love her dearly may rush to comfort her and they will get bitten by my little dog who will be out of her mind in this fit, not knowing what she is doing. A little dog that would never hurt a fly. It was a horrible experience and really worrying thinking of what lies ahead and indeed what she may unwittingly do to others. I have had to make the heartbreaking decision that shortly I will have to put her down.

    We must prevent this disease spreading amoungst our little WH dachshunds causing ghastly suffering to them and untold worry to their owners. We must not breed from affected dogs.
    As dog owners and breeders we must show integrity and commonsense for the future good of the breed and
    not continue to breed from affected animals for profit.

  6. Shelley Tomsett says:

    Hi the two dogs of mine tested affected are now both still showing no problems but are below 4years so I would not expect anything yet. The only thing that I can say is that both are less obviously outgoing and happy as my others although not unfriendly to people.
    My stud that started fitting and had showed the head jerking and produced an affected puppy has now been put down as his temperament deteriorated badly and although placed in a quiet home with a single older person he started biting when upset bypass strange sights and sounds. He was only 5 years old.

  7. gill says:

    Shelley thank you so much for submitting this comment. I’m so sorry to hear how quickly your affected stud deteriorated – how sad. Very interesting to note your comment re them being less outgoing/happy as others have also commented on that. We would be very grateful if you could record the results of all three of your affected dogs on the progression survey. Even though the two younger dogs are not showing any symptoms yet, it’s important that we have ongoing data on as many affected dogs as possible to help with the research. You can go to the link from this page

  8. hugo says:

    Basset Hound, 9 years at onset, now 9.5. Castrated – unlikely to breed.

    After fits, vet diagnosed epilepsy; prescribed Pexion. Fits infrequent; twitching liveable-with. No noticeable effect of Pexion; discontinued.
    Vet then thought brain tumour. We declined MRI. No DNA test.
    After learning about wire-haired dachshunds, we recognise similar symptoms.

    Ray pp Hugo

  9. gill says:

    hi Ray, thanks for contacting us. If you’d like to take part in the progression survey, please contact me on laforadogs@btinternet.com

  10. JANE HUGHES says:

    Hi there …..I am so upset ….my mums Dachsund has started to do all the head jerks …7 years ago we had a Dachshund called Sula she was so special to us all ……Sula was diagnosed with Lafora and we sadly lost her ….After great upset etc., Mum decided she wanted a new puppy Dach, and along came Lucy …we have noticed she has all the same symtons as Sula had with head jerking …. The breader where
    Sula was from reccomended the breeder where we got lucy and we are devastated…… Mum feels Lucy has this lafora and can’t believe we have got to go through it all again. Poor, poor Lucy. We are so upset and annoyed. It was 2006 when we lost Sula and we just praying there may be meds to help lucy …please, please could you send me any info that may help ……………….?

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