Dear Norwich Terrier Club Owner, This is being forwarded to you in the hope that you will take the time to complete the attached questionnaire concerning the “epileptoid cramping syndrome” that affects some Norwich Terriers. If your Norwich has never suffered from this syndrome you only need to complete the first page showing pedigree & age details. It is important that unaffected as well as affected dogs are recorded in order to establish the incidence in the breed.Please return to the address at the end of the Questionnaire by the extended deadline date of 30th. March 2015. Many thanks, Beverley Watkins – Secretary of The Norwich Terrier Club. Luisa De Risio DVM MRCVS PhD DipECVN European & RCVS Recognised Specialist in Veterinary Neurology, Head of Neurology/Neurosurgery, Animal Health Trust writes: You have been forwarded this letter on behalf of the Animal Health Trust (AHT), because you are probably the owner of one or more Norwich terriers born after 1st January 2000. The Animal Health Trust (AHT) in Newmarket would like you to take part in a study we are carrying out to investigate epileptoid cramping syndrome in Norwich terriers in UK. This syndrome is characterised by episodes of “muscle cramps/spasms” affecting one or more body parts. The episodes generally last a few to several minutes. Dogs are completely normal in between episodes. You can view a video these episodes in an affected Norwich Terrier on the online version of this letter. Your contribution could help us to increase our understanding of this disease and possibly develop tools for breeders to breed future generations of Norwich Terrier that are less likely to be affected. The AHT exists to fight disease and injury in animals. Thanks to our pioneering work improving diagnosis, treatment and prevention, dogs, cats and horses are living healthier, happier lives – in the UK and across the world. To find out more about the AHT go online to www.aht.org.uk or telephone 01638 552700 or email referrals@aht.org.uk Please could you help us with this study? Taking part is easy. You just need to answer the simple questions listed in this questionnaire. Please fill in the questionnaire regardless of whether your dog has ever been affected or not – it is important we collect questionnaires from healthy Norwich Terriers as well as affected ones. Although we may have previously contacted you to ask you to fill in a questionnaire on epileptoid cramping syndrome, we would still be very grateful if you could fill in this updated questionnaire so that we have the most up to date information possible about your dog. If your Norwich Terrier is healthy at the time of completing the questionnaire, but becomes affected with epileptoid cramping syndrome at a later date we would be grateful if you could inform us by contacting Julia Freeman. Also if you wish to receive further copies of the questionnaire by mail please call 01638 552700 (Monday to Thursday 9am to 4 pm) and ask for Julia Freeman or email julia.freeman@aht.org.uk. Please make an extra blank copy for each of your dogs before you start to write. Please fill in the questionnaire as accurately as you can, but do not worry if you cannot answer all the questions. We would be very grateful if you could complete the questionnaire within 4 weeks from receipt of this letter. All the information you provide will be confidential to the investigators. Thank you for taking the time to contribute to our study and for helping us to help this wonderful breed. Norwich Terrier Epileptoid Cramping Syndrome Questionnaire. Please provide details when requested and tick the relevant boxes after each question. All information provided will be kept confidential by the investigators and will be very helpful to increase understanding, and possibly treatment and prevention of this condition. Date of questionnaire completion Dog’s name (call or nickname) Dog’s Kennel Club registration number Dog’s Kennel Club name Sex: [ ] Male [. ]. Female. [. ]. Neutered Date of birth: dd/mm/yyyy Body Weight If this dog is no longer alive, please specify Date of death Cause of death (if known) Owner’s Name Owner’s address Owner’s telephone number Owner’s e-mail address If the AHT investigators require further details from you: Would you be happy to be contacted by the AHT investigators? [. ]. Yes [ ]. No If yes, please specify preferred method and time of the day to be contacted Has your Norwich terrier ever experienced one or more episodes characterised by muscle cramping (prolonged muscle spasm/ stiffness/ rigidity) of one or more limbs resulting in difficulty standing up and walking, and swaying of the back similar to the episodes shown in the online video (http://youtu.be/xej2d-mYyyo)? [. ]. Yes [. ]. No [. ]. Not sure If no, please submit this questionnaire now and email julia.freeman@aht.org.uk or call 01638 552700 (Monday to Thursday 9 am to 4 pm and ask for Julia Freeman) if your Norwich terrier develops any of these episodes in the 12 months following submission of this questionnaire. If yes or not sure, it would be extremely helpful if you could answer as many as possible of the following questions before you submit the questionnaire: 1. How old was your dog when he had the first cramping episode? 2. Is your dog completely normal in between cramping episodes? [. ] Yes [. ]No [. ]Not sure 3. Do the cramping episodes always look the same? [ ]. Yes [. ]. No [ ]Not sure 4. Please describe in your own words what your dog does just before, during and soon after the cramping episodes (if cramping episodes are not alike, describe the most common type 1st and the less common type/s after) (if you need more space attach another page) 5. If known, can you please write the dates in which the cramping episodes have occurred until today (ideally day/ month/ year or at least month and year) or indicate average cramping episode frequency (for example one episode a month)? If your dog has had more than one cramping episode on a particular day please specify cramping episode number if known, or indicate more than 1 cramping episode near that date (for example 1 May 2014- 3 cramping episodes). 6. As an average, how many hours a day does your pet spend with you or other family member/s? _______________________________________ hours/ day 7. How long do the cramping episodes generally last? [. ] less than 1 minute; [. ] 2 to 5 minutes; [. ] 6 to 30 minutes; [. ] 31 to 60 minutes; [. ] Other duration, please specify____________________________________; [. ] unknown duration 8. Do you time the cramping episode with a timing device? [. ] Yes; [. ] No 9. Does the duration of cramping episode vary in your dog? [. ] Yes; [. ] No; [. ] Not sure 10. If yes please indicate the shortest and longest duration?_____________________________ 11. What is your dog generally doing just before a cramping episode occurs (you can select more than one answer)? [. ] resting [ ] sleeping [. ] walking [. ] running [. ] other activity, please specify__________________________ [. ] playing 12. If your dog is doing any activity when the cramping episode starts, does he/ she try to continue performing that activity (e.g. playing)? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 13. Do any of the following factors trigger a cramping episode (you can select more than one answer)? [. ] stress [. ] anxiety [. ] excitement [. ] sudden movement; [. ] exercise; [. ]waking up from sleep, [. ] changing weather or extremes in the weather, [. ] food, [. ] heat cycle, [. ] variation in daily routine; [. ] other trigger or stimulus, if so, specifywhichone/________________________________________________ 14. In the day, hours or minutes preceding a cramping episode does your dog show any behavioural changes such as (please select all that apply): 14. In the day, hours or minutes preceding a cramping episode does your dog show any acting anxious or agitated, restlessness, pacing, acting fearful; increased affection; attention/ behavioural changes such as (please select all that apply): quieter than usual; withdrawal, [.contact ] actingseeking; anxiousbecoming or agitated, [. ] restlessness, [. ] pacing, [.hiding; ] actingsleepy; fearful;disorientated/ [. ] increased affection; confused; aggressiveness, barking/whining; repeated licking; salivating, vomiting; no, my [. ] attention/ contact seeking; [. ] becoming quieter than usual; [. ] withdrawal, [. ] hiding; [. ] dog sleepy; does not show any behavioural changes before a cramping episode; other behavioural changes [. ] disorientated/ confused; [. ] aggressiveness, [. ] barking/whining; [. ] repeated licking; [. ] (please specify)____________________________________ salivating, [. ] vomiting; [. ] no, my dog does not show any behavioural changes before a cramping episode; [. ] other behavioural changes (please specify)____________________________________ 15. When a cramping episode starts which body part/s is/ are affected first? (please select all that apply) [. ] head; [. ] neck; [. ] abdomen (tummy); [. ] back; [. ] tail; [. ] front limbs; [. ] rear limbs; [. ] front and rear limbs on one side (left or right); [. ] one limb, specify which one_______________ 16. Are other body parts affected soon after? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 17. If yes, which ones? (please select all that apply): [. ] head; [. ] neck; [. ] abdomen (tummy); [. ] back; [. ] tail; [. ] front limbs; [. ] rear limbs; [. ] front and rear limbs on the other side; [. ] other limbs, indicate which ones ______________________________________________________________________________ 18. During the cramping episode does your dog make repeated licking movements? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 19. During the cramping episode does your dog make repeated chewing movements? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 20. During the cramping episode does your dog have any twitching of the muscles in his/ her face? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 21. During the cramping episode does your dog make repeated side to side swaying movements? [. ] Yes, of his/ her rear [. ] Yes, of his/ her head [. ] Yes, of his/ her entire body [. ] No [. ] Not sure or sometimes 22. During the cramping episode does your dog lift up (flex) one or more limbs? [. ] Yes [. ] No [. ] Not sure or sometimes 23. If yes, which limb/s? (please select all that apply) [. ] left front limb; [. ] right front limb [. ] left hind limb [. ] right hind limb 24. During the cramping episode does your dog stretch out (has extensor rigidity/ stiffness of) one or more limbs? [. ] Yes [. ] No [. ] Not sure or sometimes 25. If yes, which limb/s? (please select all that apply) [. ] left front limb; [. ] right front limb [. ] left hind limb [. ] right hind limb 26. During the cramping episode does your dog arch his back? [. ] Yes [. ] No [. ] Not sure or sometimes 27. During the cramping episode does your dog arch his tail? [. ] Yes [. ] No [. ] Not sure or sometimes 28. Is your dog able to stand during the cramping episode? [. ] Yes, during the entire cramping episode; [. ] Yes, during part of the cramping episode; [. ] No [. ] Not sure or sometimes 29. Is your dog able to walk during the cramping episode? [. ] Yes, during the entire cramping episode; [. ] Yes, during part of the cramping episode; [. ] No [. ] Not sure or sometimes 30. Do you think your dog’s level of awareness remains normal during the cramping episode (e.g. he/ she is aware of who you are and where he/ she is)? [. ] Yes, for the entire duration of the cramping episode; [. ] Yes, during part of the cramping episode; [. ] No; [. ] Not sure or sometimes 31. Do you think your dog is uncomfortable during the cramping episode? [. ] Yes; [. ] No; [. ] Not sure or sometimes 32. Do you think your dog is in pain during the cramping episode? [. ] Yes; [. ] No; [. ] Not sure or sometimes 33. Is your dog having “rumbling stomach“, “stomach or intestinal noises“(borborygmi) before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes,during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ] Not sure or sometimes 34. Is your dog salivating (drooling/dribbling) more than normal before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes, during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ] Not sure or sometimes before or during or after (select which) 35. Is your dog urinating before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes,during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ] Not sure, sometimes before, sometimes during, sometimes after (select which) 36. Is your dog defecating before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes,during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ]Not sure 37. Is your dog vomiting (sick) before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes,during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ] Not sure, sometimes before or during or after (select which) 38. Is your dog having diarrhoea before/ during/ after the cramping episode? (please select all that apply) [. ] yes, before the cramping episode; [. ] yes,during the cramping episode; [. ] yes, after the cramping episode; [. ] No; [. ] Not sure, sometimes before or during or after (select which) 39. Can you stop your dog having a cramping episode? [. ] Yes [. ] No [. ] Not sure or sometimes (select which) 40. If yes, which action helps stopping a cramping episode (please describe)? 41. In the minutes/ hours following a cramping episode does your dog show any of the following (please select all that apply): [. ] disorientation/ confusion, [. ] aggressive behaviour, [. ] acting fearful; [. ] restlessness, [. ] pacing, [. ] becoming quieter than usual; [. ] lethargy, [. ] deep sleep, [. ] attention/ contact seeking; [. ] hunger, [. ] thirst, [. ] defecation, [. ] urination, [. ] wobbly when walking, [. ] blindness (bumping into things); [. ] other_______________________________________________________________________ 42. Do the cramping episodes occur in the morning, afternoon, evening, night or any time? [. ] morning [. ] afternoon; [. ] evening; [. ] night; [. ] any time; [. ] Not sure 43. Has the severity of the cramping episodes changed since your dog had the first one (e.g. worse muscle spasms, more body parts involved)? [. ] Yes, it has increased; [. ] Yes, it has decreased as my dog got older; [. ] Yes, it has decreased after starting drug treatment; [. ] Yes, it has decreased after diet change; [. ] No, episode severity is unchanged [. ] Not sure if episode severity has changed; [. ] Other response, please specify__________________________________ 44. Has the frequency of the cramping episodes changed overtime? [. ] Yes, it has increased; [. ] Yes, it has decreased as my dog became older; [. ] Yes, it has decreased after drug treatment initiation; [. ] Yes, it has decreased after diet change; [. ] No, episode frequency is unchanged [. ] Not sure if episode frequency has changed; [. ] Other response, please specify_____________________________________________________________ 45. Has the duration of the cramping episodes changed since your dog had the first one? [. ] Yes, it has increased; [. ] Yes, it has decreased as my dog became older; [. ] Yes, it has decreased after drug treatment initiation; [. ] Yes, it has decreased after diet change; [. ] No, episode duration is unchanged [. ] Not sure if episode duration has changed; [. ] Other response, please specify___________________________________________ 46. Do you think the cramping episodes negatively affect your dog’s quality of life (e.g. affect his/her life style as a pet dog)? [. ] Yes [. ] No [. ] Not sure 47. Have you ever taken your dog to your veterinarian or a veterinary specialist in neurology for investigation on the nature of these cramping episodes? [. ] Yes to my primary vet; [. ] Yes to a specialist in veterinary neurology [. ] No 48. Has any type of treatment (medications or vitamins) and/ or a diet change been attempted to reduce the frequency and severity of the cramping episodes? [. ] Yes [. ] No [. ] Not sure 49. If yes, please indicate which one/s by ticking the relevant box: [. ] Phenobarbitone (Epiphen) [. ] Potassium bromide (Libromide, Epilease) [. ] Imepitoin (Pexion) [. ] Levetiracetam (Keppra) [. ] Gabapentin (Neurontin) [. ]Zonisamide (Zonegran) [. ] Pregabalin (Lyrica) [. ] Carbamezapine (Tegretol) [. ] Acetazolamide (Diamox) [. ] Hyoscine (Buscopan) [. ] Vitamin E [. ]Vitamin B [. ] Diet change [. ] Other, please specify____________________________________________ 50. If there has been a diet change please specify the diet/s your dog received before/ when the cramping episodes started and the diet/s given after the cramping episodes started ___________________________________________________________________________ 51. If a medication has been given please specify its name and dosage (e.g. Phenobarbitone 90 mg twice daily), treatment duration (e.g. 3 months) and if known the blood level of the medication if checked by your vet (e.g. 20 mg/l)_________________________________________________________________ ______________________________________________________________________________ 52. Has any type of treatment or diet helped decrease the frequency of the cramping episodes? [. ] No [. ] Not sure [. ] Yes, please specify which one/s______________________________________________ 53. If yes, please specify cramping episode frequency before and after treatment initiation/ diet change (if known) ____________________________________________________________________________ 54. If any type of treatment or diet has helped to decrease the frequency of the cramping episodes, please select from the following [. ] cramping episode frequency has decreased by less than 50%; [. ] cramping episode frequency has decreased by more than 50%; [. ] cramping episode no longer occurred after treatment initiation/ diet change 55. Has your dog been diagnosed with any food intolerance/ allergy? [. ] no [. ] not sure [. ] yes, please specify to which food your dog is allergic/ intolerant ______________________________________________________________________________ 56. Has your dog been diagnosed with any other medical condition/s? [. ] no [. ] not sure [. ] yes, please specify____________________________________________________________ 57. If yes, is your dog being administered any treatment for the concurrent medical condition/s? [. ] no [. ] not sure [. ] yes, please specify____________________________________________________________ 58. Comments and additional information (If you have any additional information which you think might be useful, please add it in the space provided here or on extra paper) 59. If the AHT investigators require further details from your primary vet: Would you be happy if the AHT investigators contacted your vet for further information? [. ] Yes [. ] No 60. If yes please provide Primary Veterinarian name Veterinary Practice name Practice address Telephone number Fax number Email 61. If you have been referred to a specialist in veterinary neurology for investigation of the cramping episodes, the AHT investigators may require further details from the specialist in veterinary neurology: Would you be happy if the AHT investigators contacted the veterinary specialist for further information? [. ] Yes [. ] No 62. If yes please provide Specialist in veterinary neurology name Specialty Practice name Practice address Telephone number Fax number Email Thank you for completing the questionnaire, please post completed forms to:Julia Freeman Neurology/ Neurosurgery Unit, Animal Health Trust, Lanwades Park, Kentford, Newmarket, Suffolk, CB8 7UU If possible, please provide video footage of the cramping episodes to julia.freeman@aht.org.uk or by post to the above address. (please feel free to provide as much extra information as you think is relevant, attach extra pages if needed)