Search & respond.

S Down Syndrome and Obsessive/Compulsive Disorder

My son is ten years old and has Down syndrome. He exhibits signs of obsessive compulsive disorder, including stopping to check and recheck his actions, and often beginning again when there was nothing wrong in the first place. The resulting `obsessive slowness' is disruptive to family life at times, and evokes frustration in all of us, which in turn is not good for our son. What is known about OCD and Down syndrome? Does anyone else also have experience with this or have any suggestions on how to help my child, especially regarding his `obsessive slowness' behavior?

--LM via EP Web Site

S Aggressive Social Behavior

My child was born at term with an abdominal malformation, and subsequently had a surgical repair under general anesthesia and a lengthy stay in the NICU. Now, I am looking for any information on treatments used to manage impulsive and aggressive social behavior in an otherwise competent child. If anyone can recommend publications or clinicians to turn to, that would be great.

--CB, via EP Web Site

S Technology Help

I need assistive technology help. There are thousands of internet sites and hundreds of companies and I am having difficulty sorting through the maze. Generality, if people could recommend a few web sites, that would help. Specifically, I need to know what kind of computer to get for my home, one that would enable us to use the internet and that would also be compatible with having a cause-and-effect device installed for programs.

--DM via EP Web Site

S Swim Diapers

I am looking for a swim diaper to fit an adult-sized 12-year-old. We have recently found a floatation suit that allows our son to go back into the pool, but his Attends bulk up. I need an alternative to a disposable diaper for his swim outings. I know of many other parents who are looking for the same thing. Any ideas?

--CD via EP Web Site

S Reading Programs

I am working with a 10-year-old girl with autism and I need help on tutoring her with reading. She reads on a first or second grade level. She has done Lovaas programming. She will be going into a fourth grade classroom in the fall. If anyone has ideas, please contact me.

--B via EP Web Site

S Behavior Problems in Traffic

I have a 10-year-old son with cerebral palsy. He is non-ambulatory. We have a conversion van equipped with a lift so that he can be transported in his motorized wheelchair, but traveling with our son is becoming almost unbearable. If we should get caught in congested traffic and need to slow down, he will start to cry and scream and will not stop until we can pick up speed and move again. This behavior is taking its toll on the entire family! My other two children do not want to travel with their brother. And there is a strain on my relationship with my husband when our son starts to cry and scream. No amount of comforting or reasoning seems to help. When we are preparing for a long trip, I try to talk and reason with our son prior to the trip. He says he is sorry, but once we hit the traffic jam or slow down for some other reason, he starts crying as if he is terrified or something is hurting. After the episode, I try talking with him to find out why he cried, and he can't seem to tell me. Does anyone have any suggestions to help us all out when traveling? Our nerves are just about shot. Thank you.

--GD, via EP Web Site

S Seizure Treatment Options

My two-and-a-half-year-old son has CP, a severe swallowing disorder, and a seizure disorder. His seizures respond to seizure medications, but because he is non-verbal he cannot tell us of side effects. The last medicine, Keppra, caused nausea and gagging, and consequently worsened his gastroesophageal reflux. Because of the swallowing disorder, he aspirated and has had tracheitis (he has a tracheostomy tube in place) more often than not. We monitor him vigilantly, but it can take time for us to make a thorough analysis of what is going on with him. In the meantime, he is uncomfortable, sick, and in danger. What other treatment options exist, other than these medications with their side effects, to alleviate seizures? I've heard of the ketogenic diet, although I don't know much about it. How about natural supplements? By solving one problem we exacerbate another. I'm eager for any help or advice.

--NS, via EP Web Site

S Supportive, Backpacks

My son, nearing his third birthday, weighs just over 30 pounds and is about 3 feet long. He has mixed tone, arching sometimes, floppy at others. I am looking for a back pack that can hold him and give him the support he needs, including head support. I want to be able to take him for a hike in the forest. Any ideas?

--NS, via EP Web Site

S Aicardi Syndrome Information

My two-month-old daughter has been recently diagnosed with Aicardi syndrome. Information on this is very limited. I am looking for information and support from other families with daughters who have this syndrome. I am very interested in information for seizure control.

--CM, via EP Magazine

S Safety

Our six-year-old suffered brain damage at three months after being shaken by a daycare provider. He is developmentally delayed and has partial paralysis on the right side, although he can walk with an AFO. Developmentally he is about three. We need to move him out of his crib but are debating which is better: to get a bed that contains him so he cannot hurt himself playing with electrical outlets or to have the outlets covered or moved high on the wall. We would like suggestions from those who have faced a similar dilemma.

--NH, via EP Web Site

S Aggressive Sleep Movement

I have a three-and-a-half-year-old son with CP who cannot walk or talk. He wakes up every night at about 3:30 am. His eyes are still shut but his arms and legs go a mile a minute and he cries. I have tried to talk to his doctors but they can't find anything. Anyone have suggestions?

--GM, via EP Web Site

S Looking for Support

I am the mother of a nine-year-old boy who has cerebral palsy and a history of epilepsy (seizure free since brain surgery in 1995). He was doing very well up until October of last year, walking with help at the parallel bars, his speech improving, and his overall health wonderful. Then, overnight, everything just went crazy. He can no longer eat normal food, needing it to be pureed. He cannot stand to be touched, crying every time we just start to come near him. He is just slipping so fast and no one can tell us what has happened. He has been through several tests and they have all been normal. For that we are grateful, but we still don't know what has caused him to regress. If anyone has gone through something like this please feel free to email me. We would deeply appreciate talking with anyone who could possibly help us.

--TG, via EP Web Site

S Rett Syndrome

Where can I find information online about Rett syndrome? Someone was describing it to me, and since my child is undiagnosed, the brief description I heard was very interesting to me.

--HL, via EP Web Site

RELATED ARTICLE: 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 about 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: EP Magazines, Attn.: Search/Respond, 65 East Route 4, River Edge, NJ 07661; Fax to: [phone]; e-mail to [e-mail]; or visit Search b 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; [phone]; [phone]; Web site: http://www.rarediseases.org. Also, see the "National Resources for Specific Disabilities" directory in Exceptional Parent's 2002 Resource Guide (January 2002, starting on page 22).

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. Look for Dr. Feudtner's comments on certain Search & Respond letters.