AHC Form Today’s Date: Month: _____ Day: ____ Year: ______ Name of person completing form: First: ____________ Last: ________________ Relationship to Patient: __ Self __ Legal Guardian __ Other:___________________________ ----------------------------------------------------------------------------------------------PATIENT INFORMATION Patient’s Name: First:________________ Last:___________________ Patient’s Birth Date: Month: _____ Day: ____ Year: ______ Patient’s Gender: _____Male Patient’s Race: ___White ___Black or African American ___Asian ___Hispanic or Latino ___American Indian and Alaska Native ___Other:________________________________ Patient’s Address: Street______________________________________ _____Female City: _____________________State/Province: ________ Postal Code: _________ Country:________________ Patient’s Phone: Home:__________________ Cell: ___________________ Patient’s Primary e-mail: ________________________________ Patient’s Secondary e-mail: ________________________________ ------------------------------------------------------------------------------------------------ Page 1 of 27 MOTHER’S INFORMATION Mother’s Name: First: ________________ Maiden: _________________ Mother’s Birth Date: Month: _____ Day: ____ Year: ______ Mother’s Address: Street_________________________________________ City: _____________________State/Province: ________ Postal Code: _________ Country:________________ Mother’s Home Phone: _____________________________________________ Mother’s Cell Phone: ______________________________________________ Mother’s Work Phone: ______________________________________________ Mother’s Primary e-mail:_____________________________________________ Mother’s Secondary e-mail: ___________________________________________ ----------------------------------------------------------------------------------------------FATHER’S INFORMATION Father’s Name: First: ________________ Last: ___________________ Father’s Birth Date: Month: _____ Day: ____ Year: ______ Father’s Address: Street_________________________________________ City: _____________________State/Province: ________ Postal Code: _________ Country:________________ Father’s Home Phone: _____________________________________________ Father’s Cell Phone: ______________________________________________ Father’s Work Phone: ______________________________________________ Father’s Primary e-mail:_____________________________________________ Father’s Secondary e-mail: ___________________________________________ ----------------------------------------------------------------------------------------------Page 2 of 27 LEGAL GUARDIAN’S INFORMATION (If other than parent or patient) Legal Guardian’s Name: First: ________________ Last: ___________________ Guardian’s Address: Street______________________________________ City: _____________________State/Province: ________ Postal Code: _________ Country:________________ Guardian’s Home Phone:__________________________________________ Guardian’s Cell Phone: ______________________________________________ Guardian’s Work Phone:______________________________________________ Guardian’s Primary e-mail:____________________________________________ Guardian’s Secondary e-mail: __________________________________________ ---------------------------------------------------------------------------------------------DOCTOR’S INFORMATION Doctor's Name: First: ________________ Last: ___________________ Doctor’s Specialty: ____________________________________________ Doctor’s Phone: _____________________________________________ Doctor’s Address: Street_________________________________________ City: _____________________State/Province: ________ Postal Code: _________ Country:________________ ---------------------------------------------------------------------------------------------- Page 3 of 27 General health questions to be completed by parent(s) of child with AHC: 1. How many total children do you have? 2. What is your child’s current age (child with AHC)? ______years ______months 3. Does your child have any: (mark all that apply) a. Skin discolorations b. Café au lait spots c. Birthmarks d. Nevis 4. Does your child have hip problems? (mark all that apply) a. No b. Yes-hip pain c. Yes-hip displacement d. Yes-diagnosed hip dysplasia i. Surgically repaired ii. Not surgically repaired iii. PT iv. No PT 5. Does your child suffer from constipation? a. Never b. Occasionally c. Frequently d. Chronically 6. 7. 8. 9. Does your child display any obsessions or compulsions? a. Yes b. No c. Not sure If yes, please describe: What surgical procedures has your child had? Is your child wheelchair bound? a. Yes b. No If yes, what percent of the time does your child use the wheelchair? a. 1-10% b. 11-25% c. 26-50% d. 51-75% e. 76-100% Other medical problems: □ Liver Problems (hepatic insufficiency) □ Heart rhythm abnormalities (cardiac arrhythmia) □ Kidney Problems (renal insufficiency) □ Seizure disorder (epilepsy) □ Congenital heart disease □ Central nervous system □ Pancreatic abnormalities □ Bleeding disorder (coagulopathy) Page 4 of 27 □ Respiratory system abnormalities □ Urogenital abnormalities □ High blood pressure (hypertension) □ Endocrine abnormalities □ Gastrointestinal disorder □ Hearing loss □ Fatty acid or mitochondrial disorder □ Immune disorder □ Urea cycle disorder □ Other _____________________________________ AHC Questions 1. What type of attacks has your child experienced? (Please either circle answers, check the correct box, or fill in blanks for questions below) 1a. Color or temperature change : yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds How often does your child currently have color or temperature changes? a. Multiple times a day b. Once a day c. Multiple times a week d. Once a week e. Multiple times a month f. Once a month g. Multiple times a year h. Once a year i. Never Page 5 of 27 1b. Tonic or dystonic episodes (stiffness, posturing): yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds 1c. Hemiplegic episodes, or limpness on one side: yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds 1d. Quadriplegic episodes, or limpness on both sides (Full-body episodes): yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds Page 6 of 27 1e. Currently, are your child’s spells predominantly? Stiffness (posturing, dystonia), or Floppiness (flaccid paralysis) _________________________________________________________________________ 1f. Breathing difficulties: yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds Has your child actually had a respiratory arrest and stopped breathing entirely? yes no don’t know If yes, please describe: How many times has your child been intubated for breathing difficulties? _____ Please describe: Page 7 of 27 1g. Eye movement abnormalities: yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds Do eye movement abnormalities occur predominantly? Before episodes During episodes After episodes 1h. Seizures or convulsions (episodes associated with loss of consciousness or altered consciousness): yes no don’t know Age of onset: ____years _____ months _____weeks _____days Seizure type(s): Please describe (whole body or one-sided limb shaking, stiffness, eyes rolling, etc.): Is your child able to communicate during seizures? Has your child ever had an episode of status epilepticus or persistent seizure activity lasting for more than 20 minutes? yes no don’t know Has your child had seizure activity documented on EEG? yes no don’t know In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds Page 8 of 27 1i. Tremor (involuntary shaking or trembling movements): yes no don’t know Age of onset: ____years _____ months _____weeks _____days In the past year, how long did your child’s: Longest episode last? ____ days ___hours ___minutes ___seconds Shortest episode last? ____ days ___hours ___minutes ___seconds How long does a typical episode last? ____ days ___hours ___minutes ___seconds 2. Does your child experience any ongoing neurologic symptoms between attacks, when your child is NOT having an episode? 2a. Ataxia, or balance problems If yes, please give details: yes no don’t know 2b. Incoordination, or trouble with precise movements If yes, please give details: 2c. Speech Impediment, slurring, or difficulty with speech If yes, please give details: yes yes no don’t know no don’t know 2d. Cognitive impairment, or trouble with thinking, understanding, attention, or memory yes no don’t know If yes, please give details: Page 9 of 27 3. Does sleep have any effect on your child’s episodes? If yes, please give details. 3a. Does your child routinely have difficulty sleeping? If yes, please give details: yes yes no no don’t know don’t know 3b. Has your child had abnormal behavior of any type (seizures, sleepwalking, etc) during sleep? yes no don’t know If yes, please give details: 4. Has your child had a formal neuropsychological evaluation? Please give details. yes no don’t know 5. In years, what would you estimate your child’s level of cognitive function to be? (Please Circle) 6 mos 1 yr 2-3 yrs 4-5 yrs 6-7 yrs 6. Have you noticed a slowing in development or progressive cognitive impairment? (Please Circle) 8-9 yrs 10-12 yrs Other ___ Yes No Don’t know 7. 7 In years, what would you estimate your child’s level of gross motor skills to be? (Please Circle) 6 mos 1 yr 2-3 yrs 4-5 yrs 6-7 yrs Page 10 of 27 8-9 yrs 10-12 yrs Other ___ 8. Does your child have a predominant side of hemiplegia? (Please Circle) yes no don’t know 8a. If yes, does your child’s hemiplegia always occur on 1 side only? yes no don’t know 8b. Please give details. 9. Is your child able to communicate by any means during a hemiplegic episode, when one side of body is involved? Yes No Don’t know No Don’t know No Don’t know 9a. If so, please explain (i.e. eye movement, finger, voice, etc) 9b. Is your child able to communicate by any means during a quadriplegic episode, when both sides of body is involved in a full-body episode? Yes 9c. If so, please explain (i.e. eye movement, finger, voice, etc) 9d. Is your child able to communicate between episodes, when they are not in an episode? Page 11 of 27 Yes 9e. If so, please explain (i.e. eye movement, finger, voice, etc) 10. Do any of the following factors below bring on your child’s symptoms? (Please Circle) Food Specific activities Swimming Pool Sunlight Stress Medications Bathing Excitement Fluorescent lights Temperature Menses Hormonal changes 10a. If yes, please give details. 11. Have any prescription medications (including birth control pills), or over-thecounter medications reduced the frequency, severity, or duration of AHC episodes? 11a. If yes, please provide details: 11b. Have any prescription or over-thecounter medications aggravated the frequency, severity, or duration of your child’s AHC episodes? 11c. If yes, please list: 12. Does your child have any mood or behavioral problems? 12a. If yes, please give details. Page 12 of 27 Yes No Don’t know Yes No Don’t know Yes No Don’t know 13. Has your child received medication for treatment of mood or behavioral problems? 13a. Have any medications been helpful for management of your child’s mood or behavioral difficulties? If so, please list: Yes No Don’t know Yes No Don’t know Yes No Don’t know Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Normal Abnormal Don’t know 14. Has your child had an EEG? 14a. If yes, did any episodes occur during EEG? 14b. If yes, were results normal or abnormal? 14c. Please list location of EEG testing: 14d. Please list name of physician who requested the EEG: 15. Has your child had a MRI? 15a. If so, was it normal or abnormal? 15b. Please list location of MRI testing: 15c. Please list name of physician who requested the MRI: 16. Has your child had a PET scan? 16a. If so, was it normal or abnormal? Page 13 of 27 17. Has your child had an angiogram? Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Normal Abnormal Don’t know 19b. Were you told to follow up with Cardiology? Yes No Don’t know 20. Has your child had a muscle biopsy? Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Normal Abnormal Don’t know Yes No Don’t know Yes No Don’t know Yes No Don’t know Yes No Don’t know 17a. If so, was it normal or abnormal? 18. Has your child had an MR Spect scan? 18a. If so, was it normal or abnormal? 19. Has your child had an EKG within the last year? 19a. If so, was it normal or abnormal? 20a. If so, was it normal or abnormal? 21. Has your child had a skin biopsy? 21a. If so, was it normal or abnormal? 22. Has your child experienced numbness or tingling? 23. Has your child experienced visual loss? 24. Has your child experienced hearing loss? 25. Is there a history of Migraine or other headaches in your family? 25a. Please specify relationship to patient: Page 14 of 27 25b. If so, are migraines associated with: 26. Does your child appear to have or complain of headaches? 26a. If so, do they occur during episodes, between episodes, or both? 27. Does your child seem to be in pain during attacks? 28. Are there any immediate family members with cognitive problems? (Developmental delay, mental retardation, autism, etc) Weakness Numbness Tingling Yes No Don’t know During Between Both Yes No Don’t know Yes No Don’t know 29. Pregnancy and birth history: Please provide detailed answers to questions below: a. Any complications during pregnancy? b. Did Mom take any medications during the pregnancy? c. Was baby born prematurely or on time? d. Was delivery vaginal or c-section? e. If delivery was via c-section, explain circumstances: f. Any complications during delivery? Page 15 of 27 g. Birth weight: h. Apgar scores if available? Page 16 of 27 30. Developmental history: a. At what age did your child first gain head control? ___years ___months b. At what age did your child first sit unsupported? ___years ___months c. At what age did your child first crawl? ___years ___months d. At what age did your child first walk using furniture? ___years ___months e. At what age did your child first walk alone without any help? ___years ___months f. At what age was your child’s first word? ___years ___months g. At what age did your child first put two words together? ___years ___months h. At what age did your child first use sentences? ___years ___months i. At what age did your child first write his/her name? ___years ___months j. Does your child currently write? yes no If yes, at what age level? ___years ___months don’t know k. At what age did your child first learn to read? ___years ___months l. Does your child currently read? yes no If yes, at what age level? ___years ___months Page 17 of 27 don’t know 31. Use the definitions below to answer the following 3 questions about how your child moves around when he/she is not in an episode: 6 5 4 3 2 1 C N Definitions Independent on all surfaces. Does not use any walking aids or need any help from another person when walking over all surfaces, including uneven ground, curbs, etc and in a crowded environment. Independent on level surfaces. Does not use walking aids or need help from another person. Requires a rail for stairs. If uses furniture or walls for support, please mark #4. Uses a cane (one or two), without help form another person. Uses crutches without help from another person. Uses a walker or frame, without help form another person. Uses wheelchair, may stand for transfers, and may do some stepping supported by another person or using a walker/frame. Crawling, child crawls for mobility at home (at least 5 yards) Does not apply. For example child does not complete the distance (of at least 5, 50, or 500 yards, depending on the question. Please circle your answer 31a. How does your child move around for short distances in the home? (distances of 5 yards) 31b. How does your child move around and in between classes at school? (distances of 50 yards) 31c. How does your child move around for long distances, such as at the shopping center? (distances of 500 yards) Page 18 of 27 6 5 4 3 2 1 C N 6 5 4 3 2 1 C N 6 5 4 3 2 1 C N 32. Please fill in how often, on average in the past month, your child used a: How many days a week Wheel chair Stroller Hand/Arm Braces Leg Braces Manual Power Not sure which one Regular Adaptive Not sure which one Resting hand splint Benik splints Elbow splints Not sure which one SMO’s AFO’s KAFO’s HKAFO’s Not sure which one Page 19 of 27 How long each day 33. Can your child? Unable to do any part of this task Able to do a part of this task but requires a lot of help to complete it. Able to do task but requires some assistance to complete it Comb hair Brush teeth Shower or bath Toilet hygiene Pick out clothes Get dressed Button buttons Put on shoes Tie shoes Prepare cereal or sandwich Eat with spoon Eat with fork Use knife to cut Drink from cup Draw a triangle Write a sentence Access and use internet Use cell Page 20 of 27 Able to task with only a little bit of assistance to complete it Able to complete entire task all on own Not applicable or not age appropriate phone Count change Read a book 34. How often does your child see this health care provider? Never Stoppe Once a d over year a year ago Several times a year Outpatient PT (physical therapist) School PT (physical therapist) Outpatient OT (occupational therapist) School OT (occupational therapist) Outpatient SLP or ST (speech therapist) School SLP or ST (speech therapist) Primary care provider or Pediatrician Emergency room staff Child Neurologist Pediatric Physiatrist or Rehab doctor Home care nurse/aide Page 21 of 27 Once a month Several times a month Once a week Several times a week 35. Does you child attend: Preschool Kindergarten School College Vocational school Other_______________ 36. Are the classes: Regular Special/private Resource Other_______________ 37. Does your child have an IEP (individual education plan)? Yes, currently has Yes, has in the past but not now, No, never had IEP Not sure 38. Does your child have a 504 plan? Yes, currently has, Yes, has in the past but not now, No, never had a 504 plan Not sure 39. Does your child participate in regular physical exercise (this may include a home stretching or strengthening program)? Yes, currently Yes, in the past No, never 37a. If yes, please describe: 40. Does your child participate in any sports? Yes, currently Yes, in the past No, never 39a. If yes, please describe: Page 22 of 27 41. Please list any Herbal Supplements your child is taking: 42. Please list any Vitamin Supplements your child is taking: 43. Please indicate on the following list what medications your child has taken in the past, and what medications they are currently on: For table below: mg=milligrams, g=grams, mL=milliliters, PO=by mouth, IV=injection into vein, IM=injection into muscle, PR=per rectum, Nas=nasally. MEDICATIONS Brand Name Generic Name Akineton Aldex AN Ambien Amerge Biperidin Aldex AN Zolpidem Naratriptan Naratriptan hydrochloride IsomethepteneAcetaminophenDichloralphenazone Amobarbital Amytal Clomipramine Apomorphine Chloral hydrate Trihexyphenidyl Amerge Amidrine Amobarbital Amytal Anafranil Apokyn Aquachloral Artane WHEN Past Page 23 of 27 Now DOSE (mg, g, mL) ROUTE (PO, IV, IM, PR, Nas) FREQUENCY (times per day/week) Atarax Ativan Axert Azilect Benadryl Ben-Tann BuSpar Butisol Cafergot Carbatrol Celexa Cerebyx Cogentin Concerta Cymbalta Dalmane Depakene Depakote Desyrel DHE 45 Diamox Dilantin DiphenMax Duradrin Dytan Dytuss Effexor Elavil Eldepryl Emsam Endep Entacapone Epitol Equagesic Esgic Eskalith Felbatol FentanylDroperidol Fioricet Frova Hydroxyzine HCl Lorazepam Almotriptan Rasagiline Diphenhydramine HCl Diphenhydramine Buspirone Butabarbital Caffeine/ergotamine Carbamazepine Citalopram Fosphenytoin Benztropine Methylphenidate Duloxetine Flurazepam Valproic acid Divalproex sodium Trazodone Dihydroergotamine Acetazolamide Phenytoin Diphenhydramine Tannate IsomethepteneAcetaminophenDichloralphenazone Diphenhydramine Tannate Diphenhydramine Tannate Venlafaxine Amitryptiline Selegiline Selegiline Amitryptiline comtan diphenhydramine Cabamazepine Meprobamate AcetaminophenCaffeine-Butalbital Lithium Carbonate Felbamate Fentanyl-Droperidol AcetaminophenCaffeine-Butalbital Frovatriptan Page 24 of 27 Gabitril Geodon Halcion Imitrex Imitrex Invega Isocom Kemadrin Keppra Klonopin Lamictal Lexapro Librium Lodosyn Ludiomil Luminal Lunesta Luvox Marplan Maxalt Maxalt Mebaral Mesantoin Metadate Methylin Micrainin Midchlor Midrin Migranal Mirapex Mysoline Nardil Nembutal Neurontin Niravam Norpramin Nortriptyline Parafon Forte Parcopa Parlodel Parnate Paxil Tiagabine Ziprasidone HCl Triazolam Sumatriptan succinate Sumatriptan Paliperidone IsomethepteneAcetaminophenDichloralphenazone Procyclidine Levetiracetam Clonazepam Lamotrigine Escitalopram Chlordiazepoxide HCl Carbidopa Maprotiline Phenobarbital Eszopiclone Fluvoxamine Isocarboxazid Rizatriptan Rizatriptan Mephobarbital Mephenytoin Methylphenidate Methylphenidate Meprobamate IsomethepteneAcetaminophenDichloralphenazone IsomethepteneAcetaminophenDichloralphenazone Dihydroergotamine Pramipexole Primidone Phenelzine Pentobarbital Gabapentin Alprazolam Desipramine Pamelor Chlorzoxazone Carbidopa-Levodopa Bromocriptine Tranylcypromine Paroxetine Page 25 of 27 Permax Pexeva Pristiq Prozac Rapiflux Reglan Relpax Remeron Requip Restori Risperdal Ritalin Ritalin Rozerem Sansert Sarafem Seconal Sectral Selfemra Serax Seroquel Serzone Sibelium Sinemet Sinequan Somnote Sonata Stalevo Stelazine Surmontil Symadine Symmetrel Tasmar Tegretol Tegretol Tofranil Topamax Tranxene Trileptal Tuinal Valium Versed Vigabitrin Vistaril Wellbutrin Xanax Xyrem Pergolide Paroxetine Mesylate Desvenlafaxine Fluoxetine Fluoxetine Metoclopramide Eletriptan Mirtazapine Ropinirole Temazepam Risperidone Methylphenidate Methylphenidate Ramelteon Methysergide maleate Fluoxetine Secobarbital Acebutolol Fluoxetine Oxazepam Quetiapine Nefaxodone Flunarizine Carbidopa/levodopa Doxepin Chloral hydrate Zaleplon Entacapone Trifluoperazine Trimipramine Amantadine Amantadine Tolcapone Carbamazepine Cabamazepine Imipramine HCl Topiramate Clorazepate Dipotassium Oxcarbazepine Amobarbital Diazepam Midazolam Sabril Hydroxyzine Bupropion Alprazolam Gamma Hydroxybutyrate, Page 26 of 27 GBH Sodium Zarontin Zelapar Zoloft Zomig Zomig Zonergan Zyprexa Others: Ethosuximide Selegiline Sertraline Zolmitriptan Zolmitriptan Zonisamide Olanzapine Thank you very much for your help in completing this questionnaire. If you have any questions please contact: Whit Coleman, BSN Alina Brewer, BA Phone: (801)585-9717 e-mail : whit@genetics.utah.edu alinab@genetics.utah.edu Fax: (801)587-9346 Address: Whit or Alina University of Utah Department of Neurology School of Medicine Room 3R413 30 North 1900 East Salt Lake City, UT 84132 Page 27 of 27