IN-FACT Survey

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1. What medical condition do you suffer from?

What medical condition do you suffer from?  Epilepsy
Bipolar Disorder
Migraine
Unsure
Other (please specify)
*

2. How old were you when you first received regular sodium valproate for the condition?

How old were you when you first received regular sodium valproate for the condition?  10 yrs or below
Between 10 yrs – 15 yrs
Between 15 yrs – 20 yrs
Over 20 yrs
Other (please specify)
*

3. Was Sodium Valproate the first drug your doctor prescribed?

Was Sodium Valproate the first drug your doctor prescribed?  Yes
No
*

4. Who first prescribed the sodium valproate?

Who first prescribed the sodium valproate?  Your GP
Your Specialist
Can’t remember
Other (please specify)
*

5. Did you understand what the sodium valproate was for and how long you would have to take it for?

Did you understand what the sodium valproate was for and how long you would have to take it for?
*

6. Who continued to prescribe your sodium valproate after the first prescription.

Who continued to prescribe your sodium valproate after the first prescription.  GP
Neurologist
Other (please specify)
*

7. How often did you see them?

How often did you see them?
*

8. Did you discuss contraception with a healthcare professional?

Did you discuss contraception with a healthcare professional?  Yes
No
Can’t Remember
*

9. If so with whom and how old were you?

If so with whom and how old were you?
*

10. How old were you when you became aware about the potential effects of sodium valproate on an unborn child if you were to become pregnant?

How old were you when you became aware about the potential effects of sodium valproate on an unborn child if you were to become pregnant?
*

11. Who told you or where did you read it

Who told you or where did you read it
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12. What was your understand of the information you had received?

What was your understand of the information you had received?
*

13. How many children do you have? (b) What ages are they?

How many children do you have? (b) What ages are they?
*

14. Were the pregnancies planned or unplanned

Were the pregnancies planned or unplanned
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15. Did you discuss getting pregnant with your doctor before conceiving?

Did you discuss getting pregnant with your doctor before conceiving?  Yes
No
Unsure
*

16. Were all of your children exposed to the sodium valproate?

Were all of your children exposed to the sodium valproate?  Yes
No
*

17. If not what other medication were they exposed to whilst you were pregnant?

If not what other medication were they exposed to whilst you were pregnant?
*

18. Have all of your children been adversely affected by sodium valproate during pregnancy?

Have all of your children been adversely affected by sodium valproate during pregnancy?  Yes
No
Unsure
*

19. If not, what medications were the unaffected children exposed to and, if possible what dose.

If not, what medications were the unaffected children exposed to and, if possible what dose.
*

20. If the pregnancies were planned, did you receive counselling on the known risks?

If the pregnancies were planned, did you receive counselling on the known risks?  Yes
No
Can’t Remember
*

21. If so, who told you what the risks were?

If so, who told you what the risks were?
*

22. Were you offered or switched to a different medication other than sodium valproate prior to conceiving?

Were you offered or switched to a different medication other than sodium valproate prior to conceiving?  Yes
No
Unsure
*

23. If so what medication and how soon were you switched- before conception or during pregnancy?

If so what medication and how soon were you switched- before conception or during pregnancy?
*

24. After being prescribed Valproate for some time, was it ever suggested to you to change your medication before becoming pregnant.

After being prescribed Valproate for some time, was it ever suggested to you to change your medication before becoming pregnant.  Yes
No
Can’t Remember
*

25. Was it ever suggested to you, after taking Valproate for a lengthy period and having no seizures, to reduce or even stop the medication.

Was it ever suggested to you, after taking Valproate for a lengthy period and having no seizures, to reduce or even stop the medication.  Yes
No
Seizures have never stopped
Can’t Remember
*

26. Do you take any other regular medications? Please list

Do you take any other regular medications? Please list
*

27. Did you receive advice about taking folic acid? If so, do you remember how much?

Did you receive advice about taking folic acid? If so, do you remember how much?
*

28. How well was your condition controlled during pregnancy?

How well was your condition controlled during pregnancy?  Well Controlled
Uncontrolled
Can’t Remember
*

29. Did the dose of your medication have to change?

Did the dose of your medication have to change?  Yes
No
Can’t Remember
Yes before pregnancy
During Pregnancy
*

30. Did you receive any special monitoring of yourself or the baby during pregnancy?

Did you receive any special monitoring of yourself or the baby during pregnancy?
*

31. Did your baby/child receive any special follow up after birth?

Did your baby/child receive any special follow up after birth?
*

32. How old was the neonate/ child when the problems were first noticed? And what were the problems?

How old was the neonate/ child when the problems were first noticed? And what were the problems?  Birth- 6 months
6 month- 12 months
1 yrs – 5yrs
5 yrs- 10 yrs
Over
Spina Bifida
Heart Defects
Limb Defects
Facial Features
Other (please specify)
*

33. What if any of the following Developmental Problems have been notice in your child

What if any of the following Developmental Problems have been notice in your child  Motor Control Problems
Speech Delay
Reduce Cognitive Functioning or IQ
Social Difficulties
Autistic Spectrum Disorders
Behavioural Problems
ADHD
Other (please specify)
*

34. How old was your child when any specialist referral took place?

How old was your child when any specialist referral took place?  At Birth
1 – 5 yrs
5 – 10 yrs
Over 10 yrs
Other (please specify)
*

35. Was it explained to you that your child may be at risk from Fetal Anti-Convulsant Syndrome?

Was it explained to you that your child may be at risk from Fetal Anti-Convulsant Syndrome?  Yes
No
Can’t Remember
*

36. Was there any correspondence/letter sent to you from the specialist confirming a diagnosed condition?

Was there any correspondence/letter sent to you from the specialist confirming a diagnosed condition?  Yes
No
Can’t Remember
*

37. If you received a letter of diagnosis was any information given to you explaining the diagnosed condition to you?

If you received a letter of diagnosis was any information given to you explaining the diagnosed condition to you?  Yes
No
Can’t Remember
*

38. Were you asked to complete a Yellow Form by your Doctor reporting your child’s symptoms?

Were you asked to complete a Yellow Form by your Doctor reporting your child’s symptoms?  Yes
No
Can’t Remember
*

39. If you did not complete the Yellow Form, to your knowledge, did your doctor complete one reporting your child being affected by your medication.

If you did not complete the Yellow Form, to your knowledge, did your doctor complete one reporting your child being affected by your medication.  Yes
No
Not Sure
*

40. Were you made aware of, by your doctor, specialist and/or GP, any support groups and/or Organisations, locally or nationally, who could help and advice on Valproate in pregnancy?

Were you made aware of, by your doctor, specialist and/or GP, any support groups and/or Organisations, locally or nationally, who could help and advice on Valproate in pregnancy?  Yes
No
Can’t Remember
41. Is there anything you would like to add which has not been touched upon.
Is there anything you would like to add which has not been touched upon.
42. If YOU have any questions about Fetal Anti-Convulsant Syndrome or Valproate in Pregnancy please contact either FACSA or INFACT ON 01253 799161, OR e mail at office.infactfacsa@yahoo.com or you can find us on FACEBOOK & Twitter (Emma4facs).

We offer a range of information about the condition. Please tick if you would like to receive any of the following and give your detail in the next question box.

If YOU have any questions about Fetal Anti-Convulsant Syndrome or Valproate in Pregnancy please contact either FACSA or INFACT ON 01253 799161, OR e mail at office.infactfacsa@yahoo.com or you can find us on FACEBOOK & Twitter (Emma4facs). We offer a range of information about the condition. Please tick if you would like to receive any of the following and give your detail in the next question box.  FACSA Leaflet
INFACT Leaflet
Parent Guide
Education Guide
*

43. Thank you for your time in completing this survey. Please tell us if you would like to be involved in any other of our surveys in the future. If so please give your answer below and add an e mail address if you wish to take part.

Thank you for your time in completing this survey. Please tell us if you would like to be involved in any other of our surveys in the future. If so please give your answer below and add an e mail address if you wish to take part.
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