SMA Survey for Parents


Most parents are interested in all of the genetics and histories of our kids.  If you are interested in filling out the below survey, strictly for parental sharing and knowledge of course, send in your information and we'll compile it for those who are interested.  You can maintain anonymity if you prefer!

  1. If you wish, what is the name of your child? 
  2. If you wish, what is your child's date of birth? 
  3. What sex is your child? Boy  Girl
  4. What type of SMA does your child have? 
  5. What was your child's weight and length at birth? 
  6. What is your child's current length and weight? 
  7. Was your child full-term or premature? 
  8. Did you breastfeed or bottle feed and for how long? 
  9. What age was your child diagnosed? 
  10. What symptoms led to the diagnosis?
  11. Does your child have a feeding tube? Yes  No
  12. If so, what age was the tube placed? 
  13. What type of tube do they currently have? 
  14. Has your child lost their swallow?  Yes  No
  15. If so, at what age did that occur? 
  16. Are you currently using an alternative diet with your child?  Yes  No
  17. If so, would you like to describe what you are currently doing? 
  18. Are you currently using Dr. Bach's protocol?    Yes  No
  19. If so, are you satisfied or dissatisfied with the protocol and results? 
  20. If you currently use a Bi-Pap machine, what type machine do you use? 
  21. If using a Bi-Pap, what settings do you use? 
  22. If using a Bi-Pap, how many hours a day do they use it? 
  23. Do they sleep at night with Bi-Pap, naps during the day? 
  24. If you currently use an In-Exsufflator, what settings do you use? 
  25. If using an In-Exsufflator, how many times per day do you use it? 
  26. Has your child ever been hospitalized? Yes  No
  27. What was the cause of the hospitalization(s)? 
  28. How many times has your child been hospitalized? 
  29. What type of car seat do you currently use for your child? 
  30. If your child was DNA tested, what Exon Deletions did they find? (Exon 7, 8, both or none)
  31. If YOU were DNA Tested, were you and/or your spouse found to be a carrier?
  32. Does your child receive the RSV shot on a regular basis?    Yes  No
  33. Does your child receive the normal vaccination schedule?    Yes  No
  34. Does your child receive any therapies?  (OT, PT, Speech) 
  35. What strength/movement does your child currently have? (Arms, hands, etc.) 
  36. Does your child talk?   Yes  No
  37. If so, what can they say? 
  38. How often does your child eat during the day/night? 
  39. Does your child see a pulmonologist?  Yes  No
  40. Are you satisfied with the pulmonologist?  Yes  No
  41. Do you currently have in-home nursing care?  Yes  No
  42. How many hours of in-home nursing care do you receive per week? 
  43. Do you have any advice on this or any other state-funded organizations? 

Thank you for taking the time to fill out the survey!

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