Search & Respond.
My 3-year-old who has cerebral palsy (mild spastic diplegia) has outgrown his portable baby high chair. At restaurants, his legs cannot fit into the regular high chairs, and the booster seats are not secure enough for him to move and feed himself at the table. I am searching for a portable high chair that has the right seat depth to support his legs, with a center strap to keep him from sliding off. My son is 37 inches tall. I am searching the adaptive equipment catalogs and have not found a chair yet. Does anyone have any suggestions?
MS, via the EP Web site
The Adaptive Mall Web site (http://www. adaptivemall.com) features several different manufacturers of feeding chairs/ booster seats that provide the kind of support you are looking for.
S Responding to unkind remarks
My two daughters, ages 8 and 5, have multiple sulfatase deficiency (an extremely rare genetic disorder involving severe neurologic and skeletal abnormalities). My older daughter can no longer speak, but understands some words and tone of voice. She vocalizes by squealing. She does this quite often and sometimes loudly, especially in unfamiliar surroundings. Other people assume, since she looks "normal," that she is just misbehaving and I am "letting" her do it. She and I have suffered many rude comments by both patrons and staff, and have even been asked to leave some establishments. Her behavior is not one that I can change (I am grateful for any communication), so how should I respond in these situatious? I am tired of feeling tongue-fled and humiliated, and I cannot keep her locked away.
CC, via the EP Web site
Perhaps having some business cards printed up for your daughters might help. The cards could have their names and their "job descriptions," which might include, `Giving life to the fullest with multiple sulfatase deficiency(*). "At the bottom of the card, you could have, "(*) For those of you who don't know, multiple sulfatase deficiency is an extremely rare genetic disorder involving severe neurological and skeletal abnormalities." Then, whenever someone says something unkind, you could say, "Oh, perhaps you want my daughter's business card. Somewhere down the line she might have a thing or two to teach us all." This would let you and your daughters have the final word.
EDITOR'S NOTE: For more ideas, see "Satisfying the Curious" on page 48.
S Depression in a child with cerebral palsy
I am looking for information regarding depression in children with cerebral palsy and seizures. My 10-year-old son has attempted suicide because he is angry about his condition. He has a mild mental impairment and has figured out that he is different from his peers. He is receiving counseling, but we were taken by surprise by this latest development. We have read nothing about this in books, but his doctors tell us that children with CP and seizures have a greater incidence (as much as five times higher) of suicide than the general population.
BY, via the EP Web site
Sadly, although still rare, suicide does appear to occur more frequently among people with epilepsy (just how much more frequently is debated). Futhermore, depression is common in everyone, including children with disabilities. We need to be constantly mindful of these possibilities, especially as children move into the teenage and young adult years.
S Looking for a bike trailer
My 9-year-old daughter has scimitarsyndrome (a congenital condition consisting of complex heart and lung anomalies). She cannot tolerate physical activity and functions developmentally at the level of a 4- to 5-year-old. We enjoy bicycling as a family and have used a baby-trailer type of carrier for her in the past, but she has gotten too big for it. We are looking for a trailer that can carry from 150-200 lbs. We are also on a budget and do not want something that will require a new bike. Does anyone know of such a product?
Elena, via the EP Web site
Here are two companies to try:
Cycletote Phone: (800) 747-2407 Web site: http://www.cycletote.com Blue Sky Cycle Carts Phone: (800) 669-1753
R Lip biting
PM (June 2000) has a 12-year-old daughter with cerebral palsy, high muscle tone, and a seizure disorder who bites her lips until they bleed. She does not seem able to release the bite, and there is no pattern to her behavior.
You might want to get your daughter's blood checked out. Ask the doctors to check her uric acid level. I have a son with Lesch-Nyhan syndrome (a rare metabolic disorder characterized by high levels of uric acid in the blood and severe neurologic disturbances, often including self-mutilation). He was diagnosed with cerebral palsy at age 1, and then with Lesch-Nyhan syndrome at 42 months. He started biting his bottom lip until it got infected, and after awhile we had to pull his teeth--he was destroying his bottom lip. Although Lesch-Nyhan syndrome is extremely rare in girls, you might want to ask her doctors about it.
GR, Pittsburgh, Pennsylvania
R Exercises for child with CP
ND (July 2000) has a 13-year-old daughter with spastic quadriplegic cerebral palsy. She is looking for exercises she can use to help relieve some of her daughter's spasticity. ND has carpal tunnel syndrome and it is difficult for her to maneuver her daughter.
I am a pediatric PT, and I applaud your efforts to help your daughter at home. Unfortunately, when considering exercises for an older child, you must also take into consideration your own safety (back injury and your carpal tunnel syndrome).
Depending on where you live, there are often programs such as aquatherapy and hippotherapy (horseback riding therapy) that can be fun as well as therapeutic. These programs may be costly, but no more so than traditional therapy. (Editor's note: Your insurance may not cover alternative therapies. You may want to check with your provide) There are also several positioning devices for maintaining a prolonged stretch on the hamstrings, and soft splints for wrists and hands at night.
SG, via the EP Web site
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. In this column, "S" represents Search letters and "R" represents Respond letters received to a previously printed Search. "Instant S&R" is a new feature which represents e-correspondence we have downloaded from our Web site. 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: Exceptional Parent, Attn: Search/Respond, 555 Kinderkamack Rd., Oradell, NJ 07649-1517; Fax to: (201) 634-6570; E-mail to email@example.com; or visit Search and Respond on our Web Site: 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; Web site: http://www.rarediseases.org. Also, see the "National Resources for Specific Disabilities" directory in Exceptional Parent's 2000 Resource Guide (January 2000, starting on page 30).
Each month, Chris Feudtner, MD, PhD, reviews Search & Respond for accuracy and completeness. Dr. Feudtner is a pediatrician at the Pediatric Care Center of the University of Washington in Seattle, and is currently a Robert Wood Johnson Clinical Scholar. Look for Dr. Feudtner's comments on certain Search & Respond letters.