| 1.Physical characteristics Size for age___________________________________________________________________________________ Hair color____________________________________________________________________________________ Eye color_____________________________________________________________________________________ Facial features---anything unusual?________________________________________________________________ ____________________________________________________________________________________________ Nose--anything different? Pinched nostrils? Wide and flat bridge between the eyes?________________________ ____________________________________________________________________________________________ Eyes--shape, size, any slanting? Describe:__________________________________________________________ ____________________________________________________________________________________________ Jaw--is it small? Small or large mouth?_____________________________________________________________ ____________________________________________________________________________________________ Tongue--short or long? Is it pointy?_______________________________________________________________ ____________________________________________________________________________________________ Ears---any funny creases on earlobes? Anything different?____________________________________________ ____________________________________________________________________________________________ Fingers and toes--are they long or short? Anything different?________________________________________ ____________________________________________________________________________________________ Male or female, any early signs of puberty? Early breast development? Describe:_________________________ ____________________________________________________________________________________________ ***If you would like to send a photograph of your child (or you) that we can attach to the survey, please feel free to do so.*** 2.Is your child right or left handed?___________________________________________________________ ____________________________________________________________________________________________ 3. Any history of genetic problems with your child or any close relative? (Close relatives up to your child's first cousin) If so, what and who? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Any cleft palates?____________________________________________________________________________ Any cleft lips?_______________________________________________________________________________ Any webbing of the fingers or toes? If so, where? Any deformities?___________________________________ ____________________________________________________________________________________________ Any birth defects?____________________________________________________________________________ Any developmental delays? Learning disabilities?___________________________________________________ ____________________________________________________________________________________________ Any other little thing you can think of?.__________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ 4. Pregnancy--was it normal?____________________________________________________________ Any complications? If so, what?___________________________________________________________________________ ____________________________________________________________________________________________ Any medications used during pregnancy? If so, what?______________________________________________________ ____________________________________________________________________________________________ Were you exposed to anything that you know of at home or at work?____________________________________________ ____________________________________________________________________________________________ How about your husband, what does he do for work? Was he exposed to anything? Is he on any medications? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Were either of you in Vietnam?___________________________________________________________________ Desert Storm?____________________________________________________________________________________ Were you on birth control pills prior to pregnancy? If so, for how long?______________________________________________ ____________________________________________________________________________________________ Delivery--any complications?_________________________________________________________________ What drugs were used in labor and delivery?_______________________________________________________________ ____________________________________________________________________________________________ Were you given any antibiotics?_______________________________________________________________ If yes, by mouth or by IV? Did the baby get any antibiotics, blood or drugs? What?_________________________________ Any problems at birth with the baby?___________________________________________________________________ ____________________________________________________________________________________________ Any idea what the baby's Apgar scores were?__________________________________________________________ Umbilical cord--was it normal with 3 vessels as far as you know?_______________________________________ Any feeding problems with the baby?____________________________________________________________________ Did you breast feed?_________________________ If so, for how long?______________________________________ Any milk intolerance with the baby?___________If so, were they on a soy formula like prosobee?____________________ 6. Any history of blood disorders or immune disorders in anyone else in your family? Or, any other "strange" or "rare" diseases? If so, what and who had it? ____________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ 7. Immunizations (please complete this part as fully as possible) How many did they get so far?--Polio________DPT________DtaP_______MMR_______ Hemophilus Influenza_______Hepatitis_______Chicken Pox_______ Any others?_______ Any reactions? What kind and how soon after ?________________________________________________ ____________________________________________________________________________________________ Any seizures after the shots?_______________________________________________________________ Any fever after the shots? How long after and how high?_____________________________________ ____________________________________________________________________________________________ Any inconsolable crying or high pitched crying after immunization?__________________________ Did your child have any illnesses within a week of any immunizations?_________________________ If so, what kind? (flu, diarrhea, cold etc.)_________________________________________________ ____________________________________________________________________________________________ How long after their last immunizations (or flu shots) before they were diagnosed with Evans syndrome? ____________________________________________________________________________________________ 8. What led up to you or your child getting this diagnosis?_____________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ Had they been sickly as an infant?__________________________________________________________ Did they have frequent ear infections?__________________________________________________________ Were they taking any antibiotics just before they were diagnosed with Evans syndrome? If so, what? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Any swollen glands or lumps in their neck or underarms?______________________________________ Do you own any pets or animals?_______________________________________________________________ Had you noticed bruising or excessive bleeding from minor injuries before the diagnosis? Nosebleeds? Bleeding gums? If so, for how long before? ____________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ Were there any complaints of not feeling well prior to diagnosis? If so, for how long? ____________________________________________________________________________________________ ____________________________________________________________________________________________ How old were they when they were diagnosed?__________________________________________________ Have they developed normally as far as you can tell?_____________________________________________ How old were they when they first walked?______________________Talked?______________________ Any problems with teething?__________________________________________________________________ 9. What kind of treatment has been tried?______________________________________________________ Spleen removed? If so, at what age, how long after diagnosis and how have they done since? ____________________________________________________________________________________________ ____________________________________________________________________________________________ How often is blood work done?________________________________________________________________ Are they on steroids? Prednisone? How much and for how long?______________________________________ ____________________________________________________________________________________________ Ever received IVIG (IGIV/immune globulin/gamma globulin)? If so, when was it given, only in crisis or ever tried routinely? Any relief? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Transfusions? When? What kind--platelets, red cells? Any problems?_______________________________ ____________________________________________________________________________________________ Chemotherapy? What kind? What benefit did you have?_____________________________________________ ____________________________________________________________________________________________ Cyclosporin?_______________Prayer?!_________________Anything else?________________________ ____________________________________________________________________________________________ 10. Other miscellaneous tidbits and questions... Any food intolerance or reactions to certain food additives that you've noticed? (like yellow dye #5, or MSG etc.) ____________________________________________________________________________________________ ____________________________________________________________________________________________ Do you have trouble with white blood cell counts dropping? Neutropenia?_____________________________ ____________________________________________________________________________________________ Have they had measles or chicken pox? Whooping cough? If so, how did they do with it? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Are they around other children very much? Siblings? Day care?___________________________________ ____________________________________________________________________________________________ Do they go to regular school if they are of school age? How do they tolerate it?_______________________ ____________________________________________________________________________________________ Do they have rashes that come and go?________________________________________________________ If they have rashes, please describe where they get them, and how they look.__________________________ ____________________________________________________________________________________________ Do they complain of leg cramps, arm cramps or muscle aches?____________________________________ ____________________________________________________________________________________________ Do they have normal endurance? Like, can they run and play and keep up with the other kids? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Do they have allergies? What kind?_____________________________________________________________ ____________________________________________________________________________________________ Are they sensitive to medications or perhaps the flavorings and dyes in them? Do medications seem to make them hyper or jittery? ____________________________________________________________________________________________ ____________________________________________________________________________________________ Where do you live? City/state/near water treatment plant or power plant etc.___________________________ ____________________________________________________________________________________________ Did you travel anywhere with the child either while pregnant or later, on a family vacation?_________________ ____________________________________________________________________________________________ What race are you? Any specific ethnic origins? (American Indian or Italian etc.)_______________________ ____________________________________________________________________________________________ Are they Coombs positive?__________Are they "ANA" negative?_________(lupus test) Is there any specific time of year that seems to be more of a problem with blood levels?____________________ ____________________________________________________________________________________________ Was a bone marrow biopsy done? What were the results?__________________________________________________ ____________________________________________________________________________________________ 11. Is there anything that concerns you about your child, now or in the past that you've wondered about but never thought it was anything big enough to ask the doctor about? ____________________________________________________________________________________________ ____________________________________________________________________________________________ 12. Is there anything you have a feeling about with your child? Any sixth sense feelings? NOTHING IS INSIGNIFICANT! ____________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ 13. Has your child been seen by a geneticist? What did they say?_____________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ Who did they see?_____________________________________________________________________________________ 14. Do they have any problems with their bowels? Diarrhea or constipation? Have you noticed problems with either when their counts are low?____________________________________________________________________________________________ ____________________________________________________________________________________________ 15. If you know, what is the usual range of blood levels for your child? What would you say is a safe level for them--for example, one that is lower than normal, but that they seem to tolerate well. White blood cells___________________________________________________________________________________________ Red blood cells______________________________________________________________________________________________ Platelets____________________________________________________________________________________________________ Is there anything else you would like to add? Anything else you think we should ask?_________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ Your name:__________________________________________________________________________________________ Child's name:_______________________________________________________________________________________ Address:_______________________________________________________________________________________________ ____________________________________________________________________________________________ ____________________________________________________________________________________________ Telephone Number:__________________________________________________________________________________ E-mail Address:______________________________________________________________________________________________ May we use this information without any names or identifying data in any articles that may result from tabulating the information? Would you like your name and phone number placed on a list with other people with Evans syndrome to be distributed to all for open communication and support? Please sign below: Thank you for your time. Lou Addington, Founder 1999 Evans Syndrome Research and Support Group |