ࡱ> CE<=Dq` $bjbjqPqP 4V::%|.|.|.8.l /T6//"///}0}0}0v5x5x5x5x5x5x5$7h :52}0}0225//5d5552d//v552v5555/t/ AY"|.X35v5665:3:5:5t}0Z0@514K1}0}0}0554d}0}0}062222X#$ X#   Curcumin use in Children with NPC Current age______________________ D.O.B____________________________ Age diagnosed with NPC______________________________________________ Age given first dose of Curcumin._______________________________________ Dose of Curcumin____________________________________________________ Product name /supplier_______________________________________________ Is the child taking Zavesca? Yes / No if Yes: dose _____________________ Age child started taking Zavesca_______________________________________ Any other medication prescribed or over the counter - that your child is taking please give the name, dose, frequency and start date: Please continue on a separate sheet if necessary. In order to look at what effects Curcumin may be having on NPC, please could you answer the questions on the following pages. There is one set of questions to answer BEFORE starting Curcumin and one set to answer AFTER Curcumin has been taken. BEFORE starting Curcumin 1. Does your child experience difficulty in moving their eyes up and down? (Vertical Supra-nuclear gaze palsy) Yes / No If yes is it obvious to you? Yes / No It was noticed by our doctor Yes / No Are they unable to look up or down? _________________________________________________________________________________________________________________________________________________________________________________________________________ 2. Does your child experience learning difficulties? (Cognitive Impairment) Yes / No If yes: do you consider that these are: Mild - my child still attends school Moderate - my child has trouble learning but is able to converse Profound my child has severe difficulties but still attends school Is your childs memory affected? Yes / No If Yes: - Obvious memory impairment - unable to attend school but able to most things for themselves - Severe memory loss and has great difficulty conversing with others - No functional memory or language skills 3. Does your child have swallowing difficulties? Yes / No If yes: Do they occasionally choke on dry solids? Yes / No Do they have trouble swallowing, or choke on, thin liquids? Yes / No Do they have trouble swallowing, or choke on, thick liquids? Yes / No Are they unable to swallow? Yes / No 4. Does your child have difficulty Walking? Yes / No If yes: My child is occasionally unstable when walking Yes / No My child is always unstable when walking Yes / No My child is able to walk only with assistance Yes / No My child is unable to walk Yes / No 5. Does your child have difficulty with speech? Yes / No If yes: Speech is slightly slurred but understandable by all Yes / No Speech is only understandable by those in regular contact Yes / No There is very little understandable speech Yes / No There is no speech at all Yes / No 6. Cataplexy Yes / No If yes: Head nodding only Yes / No There is occasional loss of muscle tone- not more than 3 times a week Yes / No Loss of muscle tone happens more than 3 times a week / daily Yes / No Episodes of loss of tone are daily / more than once a day Yes / No 7. Does your child experience seizures? Yes / No If yes: Seizures happen only when otherwise unwell Yes / No One seizure a month or less frequently Yes / No One seizure a week to one a month Yes / No More than one seizure a week Yes / No Has this improved with medication? Please comment _________________________________________________________________________________________________________________________________________________________________________________________________________ ___________________________________________________________________ AFTER starting Curcumin: 1. Does your child experience difficulty in moving their eyes up and down? (Vertical Supra-nuclear gaze palsy) Yes / No. If yes is it obvious to you? Yes / No. It was noticed by our doctor Yes / No Are they unable to look up or down? Please indicate all that apply 2. Does your child experience learning difficulties? (Cognitive Impairment) Yes / No If yes: do you consider that these are: Mild - my child still attends school Moderate - my child has trouble learning but is able to converse Profound my child has severe difficulties but still attends school Is your childs memory affected? Yes / No If Yes: - Obvious memory impairment - unable to attend school but able to most things for themselves - Severe memory loss and has great difficulty conversing with others - No functional memory or language skills 3. Does your child have swallowing difficulties? Yes / No If yes: Do they occasionally choke on dry solids? Yes / No Do they have trouble swallowing, or choke on, thin liquids? Yes / No Do they have trouble swallowing, or choke on, thick liquids? Yes / No Are they unable to swallow? Yes / No 4. Does your child have difficulty Walking? Yes / No If yes: My child is occasionally unstable when walking Yes / No My child is always unstable when walking Yes / No My child is able to walk only with assistance Yes / No My child is unable to walk Yes / No 5. Does your child have difficulty with speech? Yes / No If yes: Speech is slightly slurred but understandable by all Yes / No Speech is only understandable by those in regular contact Yes / No There is very little understandable speech Yes / No There is no speech at all Yes / No 6. Cataplexy Yes / No If yes: Head nodding only Yes / No There is occasional loss of muscle tone- not more than 3 times a week Yes / No Loss of muscle tone happens more than 3 times a week / daily Yes / No Episodes of loss of tone are daily / more than once a day Yes / No 7. Does your child experience seizures? Yes / No If yes: Seizures happen only when otherwise unwell Yes / No One seizure a month or less frequently Yes / No One seizure a week to one a month Yes / No More than one seizure a week Yes / No Has this improved with medication? Please comment _________________________________________________________________________________________________________________________________________________________________________________________________________ ___________________________________________________________________ 8. Have you noticed any side effects from Curcumin use? Please comment __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ 9. Do you have any further comments? _______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Thank you for your participation. 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