Search & Respond
SEARCH
WANTS INFORMATION ABOUT DAUGHTER’S DISABILITY
CATEGORY: POST HERPES ENCEPHALITIS
I have a 13-year-old daughter who was diagnosed when two months old with Post Herpes Encephalitis. Unfortunately, this disease has affected her speech and many of her cognitive skills. I can’t seem to get her potty trained either. Her receptive skills are good, although they are below her age level, and she understands a lot more than many people think. She does have a difficulty time communicating her thoughts to others. She was originally diagnosed to live no more than two years but she has proven that wrong. My daughter’s disability is very frustrating to for all of us, especially her. She is prone to seizures, takes several medications and has a VNS implant. I’m very interested in learning more about this disability so that I can be a better mom for my daughter, but have yet to discover another family whose child has the same disabilities as my daughter. Any advice is appreciated.
SEARCH
LOOKING FOR A MOTORIZED SWING
CATEGORY: CORPUS CALLOSUM
Our nineteen-month-old grandson was born with a thin corpus callosum. He cannot sit, roll over, stand or even grasp objects. He has difficulty sucking, does not know how to chew yet and makes only baby sounds. He was also diagnosed with very small optic nerves and has poor eyesight. His brain and optic nerves lack myelin coating. Last summer he began having seizures. Our grandson loves to swing but no longer fits in baby swings. Does anybody know where we can find a motorized swing that can support 30 lbs. or more?
SEARCH
INFORMATION REGARDING EARPHONES
CATEGORY: AUTISM
Does anybody have any information on the pros and cons of using earphones to address hyperacusis (supersensitive hearing) in Autism?
SEARCH
LOOKING FOR A DIAGNOSIS
CATEGORY: UNDIAGNOSED
My six-year-old daughter has been misdiagnosed twice. First she was diagnosed with CP, and then with myasthenia gravis. We took her to Mayo Clinic in 2003 and doctors found her cerebellum was smaller than normal. Our daughter is non-verbal with very low tone in the upper body, no functional use of her arms or hands, and she is small in stature with her body the size of a two or three year old. She is also easily fatigued, cannot sit or walk independently, has poor head control and is tube fed. Cognitively, she appears to be at her appropriate age level-she is a very bright and beautiful child. The Mayo Clinic still follows her case. They are stumped in finding a reason for her condition and they’ve been testing for metabolic disorders. Any opinions would be appreciated.
SEARCH
BEHAVIOR PROBLEMS CAUSE WORRY FOR PARENTS
CATEGORY: DOWNS SYNDROME
Hi friend
I am the father of a 10-year-old boy with mosaic DS. He has been attending mainstream school since nursery and is very sociable and friendly. He can communicates verbally quite well and he is very active. He does not have any medical conditions and our hopes for him have always been high, however, for many years we have noticed his behavior in term of aggressiveness and excessive routine to be quite puzzling. Having come across other children with DS, we are finding it hard to understand his behavior. When these things were mentioned to doctors they have told us not to worry but we have been pushing towards an assessment for Autism. 1 would like to know anyone else has the same problem.
SEARCH
WHAT IS THE BEST TREATMENT METHOD?
CATEGORY: CEREBRAL PALSY
My son, who has spastic triplegia, has been recently diagnosed with coxa valga. I have been told that the treatment is either surgery or a brace. It is my understanding that the brace will not fix the inward curvature of the hip. I am considering surgery. I am looking for information from others who have been diagnosed with coxa valga and what treatment method was used.
RESPONSE
GROWTH HORMONE DEFICIT
CATEGORY: OTHER
DK seeks information about injections for growth hormone deficit
My son Skyler takes daily injections. He is on Nordatropin and he is doing well. When he started he was five years old and the size of a two or three year old. He only weighed about 23 pounds and was a much shorter then his friends. He also had very young features. Now he is as tall as everyone in his class, weighs 60 pounds and is a healthy eight year old who enjoys playing soccer, baseball and basketball. His self esteem has sky rocketed and he doesn’t get any more headaches.
RESPOND
SEIZURE DISORDERS
CATEGORY: DOOSE’S SYNDROME
KL is seeking information on Doose’s Syndrome
Doose’s Syndrome is an epileptic disorder that can be considered a subtype of Lennox-Gastaut Syndrome because of its similarities, including multiple seizure types, developmental arrest and EEG findings of hypsarrhythmia. It is generally considered idiopathic, meaning there are no underlying reasons (like tuberous sclerosis or congenital brain malformation or similar) to explain it, and normal intellect can be preserved if the seizures can be controlled, but with progression of mental deterioration will progress if the child experiences with uncontrolled or intractable epilepsy. The frequency of Doose’s syndrome in northern Germany is similar to that of Lennox- Gastaut syndrome in other parts of the world. Onset can occur between about seven months and seven years of age (usually between two to five years of age). I’m not sure that diagnosing Doose’s syndrome (as opposed to Lennox-Gastaut syndrome) that it confers any additional clinical treatment benefit to the patient, while – using the term ‘Lennox-Gastuat Syndrome’ would be more consistent with current common epileptic terminology.
RESPONSE
COLLEGE HELP FOR STUDENTS WITH DISABILITIES
CATEGORY: ADHD/ADD
Wants to know if 18-year-old son with ADHD could receive help to get through college.
My son is 12 years old and has ADHD. He has been tested for an auditory problem and the doctors said some problems showed up but this may be from his ADHD. Do you have an ITP for your son? This is what you will need for him to be able to take the ACT and have a longer time to take it. This should have been set between the ages of 14-16 years but maybe it’s not too late. Check with your school, they should be able to help you. If not, keep pursuing and find some other means of help to make them formulate an ITP because they are required to do this.
ABOUT SEARCH & RESPOND
Search and Respond is an opportunity for our readers to exchange information about their practical experiences in meeting the everyday challenges of life with a child or adolescent who has a disability. All Responds are forwarded to the writers of the original Searches; some are published. Published letters may be edited for purposes of space and clarity. We also expect parents to consult appropriate professionals.
When sending correspondence, please indicate whether it is a Search or a Respond. For Responds, be sure to note in which issue the original Search letter appeared. Please remember to include a phone number on all correspondence in the event that more information is required. Write to: EP Magazine, Attn.: Search/ Respond, 65 East Route 4, River Edge, NJ 07661; fax to: (201) 489- 0074; o-mail to epedit@aol.com; or visit Search &. Respond on our website: http://www.eparent.com.
For information about specific disabilities, contact: the National Organization for Rare Disorders (NORD), 100 Rt. 37, PO Box 8923, New Fairfield, CT 06812; (800) 999-6673; (203) 746-6518; website: http://www.rarediseases.org. Also, see the “National Resources for Specific Disabilities” directory in Exceptional Parent’s 2005 Resource Guide (January 2005, starting on page 26).
EACH MONTH, CHRIS FEUDTNER. MD. PHD, REVIEWS SEARCH & RESPOND FOR ACCURACY AND COMPEETENESS. DR. FEUDTNER IS A PEDIATRICIAN AT THE CHILDREN’S HOSPITAL OF PHILADELPHIA – NORTH. LOOK FOR DR. FEUDTNER’S COMMENTS ON CERTAIN SEARCH & RESPOND LETTERS.
Copyright Psy-Ed Corporation Mar 2005