May / June 2004
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Inside This Issue:

The Neurodevelopmental Approach to Therapy Planning 1
How to Contact Us 2
From the Editor 2
Mark Your Calendars 3
KidFit101 4
Birthdays 4
All “Stressed Up” and No Where to Go 5
Juice Recommendations for Parents 5
Buddy Walk T-Shirt Contest 6
Expressing Talents and Exercising 6
Poetry Corner: “Shaney” 6
From My Side: Craig Blackburn 7
IRS Rules Obesity a Disease 8
Our House: A Parent's Perspective 8
Profile: “Heaven’s Missing An Angel--Alexis Perkins “ 9
Drs. Cavallino Presentation 10
Nutrition Handbook a Must for Parents! 11
Gastroesophogeal Reflux .11
Local Company’s Tucker Sling brings relief from GER 12
Help for Low Muscle Tone 12
Health Guidelines for People with Down syndrome 12
Special Health Care Needs Met through CSHS 13
Children’s Hospital Introduces New Program 13
Way to Go, Weigh to Grow 13
DSAGNO Welcomes New Families 13
Websites 14
Coming Soon 14

  DSAGNO's July Speaker Looks at the Whole Individual with a Neurodevelopmental Approach

Linda Kane, Neurodevelopmentalist and sound therapy specialist, will address DSAGNO families and friends on Friday, July 30th to discuss her approach to formulating therapy and treatment plans by looking at the individual as a whole. Ms. Kane believes that the potential of an individual is based on the opportunities they have, not the labels they receive. Greater outcomes can be achieved when the right opportunities are presented. She challenges parents to look beyond expectations and reach for typical, normal function, even with "labels" or diagnoses of Down syndrome and other genetic labels because "no one really knows how much a person with a genetic condition can achieve. Without any question, though, normal function will never be achieved if that is not at least the targeted goal."
Ms. Kane states in "The Neurodevelopmental Approach to Development" that the "ND approach gives power back to the family, the true experts of their children," and was "created to equip the parents with the knowledge, expertise and exact "how to" for working with their children. "
Join us on Friday, July 30th at 7:00 p.m. at Crane Rehab, 101 River Road, Jefferson Louisiana for DSAGNO's General Membership Meeting to find out more about Linda Kane's Neurodevelopmental approach to therapy and treatment for disabled children. For more information or to let us know you will be attending, call DSAGNO at (504) 846-6903. You can visit Ms. Kane's web site a
www.hope-future.org.

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FROM THE EDITOR…

When we learned Andrew had Down syndrome and might have a heart defect, I prayed to God that if He could just keep Andrew healthy, I would be the best mom I could. Tests showed Andrew only had a small hole in his heart. We were discharged from the cardiologist after 2 visits and the hole closed on its own. But, little did I know there were many other potential health problems to worry about.
Andrew experienced low weight gain and breathing difficulty and when he was 2 to 3 months old. We became concerned when his breathing became labored. It sounded as if he were almost gasping for air. I brought him to the pediatrician repeatedly for upper respiratory infections and brought up the idea of airway obstruction, but was told the test would be too traumatic for something that was not likely. I was continually told that this was "normal" and there was nothing I could do. Certainly, I knew this was not normal having had two other healthy children. Once when I asked when I should become worried, the doctor said, "When he turns blue."
Finally, when Andrew was 6 months old, I took him to an ENT who did do the "traumatic" test. I was horrified to see the camera image that showed my son’s narrow airway close in between breaths. Gulping for air was the only way he could force the airway open. I was ashamed of myself for letting this go on for so long and was determined to fix it. But it wasn’t until I saw a third ENT that we learned his adenoids were blocking his airway and that Andrew had evidently been having ear infections though no one had known. Minor surgery to remove his adenoids and insert PE tubes improved his condition dramatically.
This experience taught me some important lessons. Doctors are not all-knowing gods nor should I expect them to be. I realize that what happened was just as much my fault as the doctor who continually said this was normal. I knew things didn’t seem right, but I just accepted what he said since he was the "expert." Now I know that I must always trust my instincts and seek second opinions. "Mother knows best" is not just a cliché. And, although the experts' opinions are important to consider, so is mine.
Though I am not always 100% sure of myself, I use that motherly instinct as a guide balancing it with information I have received from others. After all, if God could trust me with such a precious gift, I certainly have the responsibility to trust myself and Him to guide us in the right direction. So my humble advice is to never abdicate absolute power to a doctor. Do your research, get advice from other parents and, find a doctor who will listen and be a partner in your decision making. Though you may sometimes make a mistake, at least you will have no regrets that you tried your best for your child.

Ann Lafourcade
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Mark Your Calenders
June 12, DSAGNO LADIES' NIGHT OUT. Join DSAGNO at Kate Kenny's House in Metairie for a pool party. 7:00 p.m. Call Pam at 466-7176 or Karen Gaddis at 467-7009. Bring a dish!

June 15, How to Write an Effective Behavior Intervention Plan. Learn how to identify problem behaviors and make and effective plan of intervention. 10:30 a.m.-12:30 p.m., Belle Chasse Library, 8442 Highway 23, Belle Chasse, LA. For more info: 888-9111.
June 16, Standing Up for Ourselves. 10:30am-12:30pm, Rosedale Library, 4036 Jefferson Highway, Jefferson , LA. For more info: 888-9111.

June 21, It's Not Just a Meeting. Learn how to effectively advocate for your child at the IEP. 10:00am-12:00 noon, Westwego library, 635 4th Street, Westwego, LA. For more info: 888-9111.

June 26, DSAGNO MEN'S NIGHT OUT. Attend the Zephyrs Game with Dads, sons and friends. 6:00 p.m. at Zephyr Field. Call Bill Wiltz for details at 466-7176.

June 26, West Bank Self-Advocates. 11:00am-1:00pm, Westwego library, 635 4th Street, Westwego, LA. For more info: 888-9111.

June 26, Discipline Rights for Students with Special Needs. Students with special needs have regulations that protect them under IDEA. Schools must follow a specific protocol when addressing behavior issues. Learn the protocol and get answers to your school discipline questions. 10:00am-12:00 noon, North Kenner Library, 630 West Esplanade, Kenner. For more info: 888-9111.

June 29, Effective Communication. 6:00pm-8:00pm, FHF GNO 4323 Division Street, Suite 108. For more info: 888-9111.

July 1, Family's Perspective. This training was developed by a panel of parents and service providers to encourage and support a relationship in which families and professionals work together. 8:30am-12 noon, Terrebonne Parish Main Branch Library, Library Meeting Room, 151 Civic Center Blvd., Houma. For more info: 985-879-2001 or 1-800-331-5570. RSVP Peggy Davis: 985-449-5181, Ext. 210

July 16, DSAGNO PARENTS NIGHT OUT. Dinner at Zeke's Restaurant, 1517 Metairie Road. Call Pam at 466-7176 or Karen Gaddis at 467-7009 for confirmation.

July 22, Special Education Tune Up: Troubleshooting the IEP Process. Join a panel of experienced parents and professionals for a light supper to discuss techniques for improving your child’s IEP process. 6:00pm-8:00pm, Northshore FHF Office, 204 West 21st Ave., Covington, LA. FREE. For reservations/info: 800-383-8700.

  

July 24-27 2004 National Youth Leadership Network Summit. Theme: LEARNING, LIVING, LEADING: YOUTH WITH DISABILITIES CONTINUING THE LEGACY. Participants learn from national disability leaders, public officials and other young leaders with disabilities from all over the country. Conference goal includes helping prepare next generation of disability leaders and identifying ways to improve policies and supports for young people with disabilities. Washington DC. For more info:
http://www.ucp.org/ucp_channeldoc.cfm/1/12/69/69-69/3028

July 22-24 NDSS Annual Conference: "Empowerment, Reaching, Achieving." Washington DC. Learn strategies to become an effective advocate, meet legislative representatives, share best practices on health care, employment, community living, learn from world-renowned experts on a variety of topics, discover new products, programs and services, up-to-date info on education and research or just network with more than 1,000 participants or find resources for babies, children, adolescents and adults with Down syndrome. For more info: http://www.ndss.org/ or call 1-800-221-4602

August 20-22 NDSC Annual Conference: "Boundless Horizons." Minneapolis, Minnesota. 32nd Annual Convention of NDSC. This year's convention will provide ideas and resources to remove artificial limits for people with Down syndrome. Network with other families and self-advocates, hear exciting speakers address topics covering the whole life span. Topics include families; health, medical and therapeutic concerns; preschool, transition and post-secondary education; employment, living options, friendships and social relationships; advocacy and legislation; communication; person-centered planning, leisure activities and much more. For more infor: www.ndsccenter.org or contact NDSC at 1370 Center Drive, Suite 102, Atlanta, GA 30338, 800-232-DSC; E-Mail: info@ndsccenter.org. David Tolleson, Executive Director.

October 24, DSAGNO’S 3RD ANNUAL BUDDY WALK. City Park’s Roosevelt Mall. Enjoy music, food, fun and friends. Watch DSAGNO NEWS and www.dsagno.org for more details as they become available. For volunteering or sponsorship info call DSAGNO at (504) 846-6903.
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Exercising & Staying Healthy: KidFit 101
The following is from the Fisher Price website: www.fisher-price.com.

Here's another good reason to get your child moving. You probably have heard about all the ways that regular activity and exercise can help to prevent obesity and other associated health problems-including diabetes and heart disease. But did you know that kids who are physically fit also perform better academically?

That was the conclusion of a major study done by the California Dept. of Education last year. Researchers there compared scores of a standardized academic achievement test with results of a state-mandated physical fitness test. The scores of 353,000 fifth grades, 322,000 seventh graders and 279,000 ninth graders were compared. The results? The more fit they were, the greater the achievements on the academic tests. "This study provides compelling evidence that the physical well-being of students has a direct impact on their ability to achieve academically," said California State Superintendent of Public Instruction Delaine Eastin.

Of course, nobody is saying that having a physically fit child guarantees an Ivy League scholarship. But it should give all parents greater impetus to help their kids get out and get more active. Here are some ideas on how to do that, from children's fitness expert Dr. Stephen Virgilio:

Make Fitness Fun: Kids instinctively want to be active; our job as parents is to help them do just that. Don't stress the competitive aspects, or pressure them to perform. Instead give them permission to have fun. Be guided not by their proficiency or by an adult what exercise should consist of…but rather by your child's laughter and enthusiasm.

Carve Out the Time…Create The Opportunities: Kids can't get active unless you give them the opportunity. Provide the time and the tools to do that. Throw around the balls, swing the bats, strap on the skates-schedule trips to the playground, the beach, the local park. Or simply make a "play date" for you and your child in your own backyard.

Teach New Skills: For children, the playground is a laboratory-a place where they experiment and discover new skills, new sports, new things about themselves. Parents can be the catalysts for such discoveries: Teaching a new skill or a new game will help make their activity more fun for their child-and more beneficial, as they make play time a learning time, as well.

Super Parents Aren't Necessarily Super Athletes: You don't have to be Derek Jeter or Marion Jones to play catch or run around the backyard with your child. What's most important is your presence. "You can still get the message across to them about the importance of being active simply by being there, supporting them, making these activities available to them," says Dr. Virgilio.

  

Provide A Daily Dose of Positive Reinforcement: Criticizing your child because they can't kick a ball straight swing a bat as well as Joey or Jane down the street is misguided. "This isn't about being the best soccer player in the neighborhood," Dr. Virgilio says. "This is

about doing your best, learning, and enjoying the activity." You can enhance that learning and enjoyment by being generous with your praise, support and encouragement. "One pat on the pack is worth more than hours of punitive drills," says Virgilio.

Sound Mind, Sound Body: Sound Familiar? Some might say that the California study merely confirms the ancient Greek idea of a "sound mind, sound body." Childhood is the time to start teaching this important lesson-that classroom learning and physical activity are not incompatible. Try to build in some time for activity every day. Remember: Physical fitness is good for every aspect of your child's health and development. And what could be more important than that?

Article by John Hanc, fitness writer for Newsday in New York and author of five books on fitness-related topics, with Dr. Stephen J. Virgilio, youth fitness expert and professor at Adelphi University in Garden Ctiy, New York.

BIRTHDAYS

May
Katie Prudhome
Stephen Slattery
Precious Fields
Nathan Leathers
Matthew Nauer
Vincent Wagoner
Christopher Arceneaux
Arianna Lott
Christine Lagarde

June
Molly Eagan
Emma Ryan
Nathan Champagne
Kaleb Anderson
Peighton Sunseri
Brandy Jones
Michelle Codnia
Lauren Deimel
Steven McSherry
Yalena Guerra
Rianna Rodriguez
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All "Stressed” Up and No Where to Go
By Karen Scallan

Here at DSAGNO News, we're always looking for new things we can bring you for our kids and ways we can help them reach their potential. It occurred to me recently that those things usually mean more for us to do as parents. Not that we wouldn't do everything we can for our kids, ... of course we would. But sometimes, it's just not possible with life's everyday demands. And when those demands are worsened by life changing events... look out!
I'm pretty used to living under stress and can usually manage to keep the wheels turning without a major derailment even when there's a lot going on. But with selling our house and trying to find a new one before we have to find a parking space to live in, I'm already seeing the usual daily pressures building up.
So after coming across an article or two about dealing with the stresses of having a child with a disability, I decided to investigate ways caregivers and parents can reduce the amount of stress we experience, or at least it's affects on us. Here's what I found:
"Journaling Your Way Through Stress: Finding Answers Within Yourself" by Robert Naseef, Ph.D
.(http://www.specialchild.com/family.html)
In this 3-page article, Naseef describes how inadequate the phrase "take it one day at a time" can be to a parent who feels like one day is just too long or too hard. He suggests reaching for a pen and paper and journaling. Setting aside just 10-15 minutes a day to journal, according to Naseef, can "be an extremely effective tool for discovering our innermost thoughts and releasing tensions." In "Journaling," Naseef refers to "Opening Up: The Healing Power of Confiding in Others" (New York: Avon:1990) in support of journaling as a way to reduce stress. "Writing helps us to organize and understand our thoughts and feelings." He cautions though not to let journaling become a stressor itself. "Try to just let it flow. What comes out may surprise or enlighten you. ... Thoughts and feelings will emerge from the inner self."
Wrightslaw: The Special Education Survival Guide by Pam and Pete Wright. In their "Tips: Taking Care of Yourself,” Pam and Pete Wright offer a quick list of tips that make sense. The Wrights suggest setting aside time to spend with your partner and a little one-on-one time with each child, take short escapes to local attractions, nurture friendships and ask for help when you need it, and share child-care with another family.
In "Self-Care For Caregivers," by Patricia Katherine Novick, Concious Choice web site (www.consciouschoice.com), November 1996, Novick talks about how caregivers expose themselves to repeated stress without replentishing their own energy until nothing is left but burnout, "a feeling of depersonalization and general futility regarding life." Novick suggests planning relief from the constant demands you are experiencing. She presents the following suggestions from actual caregivers and what worked for them: ~ "I get up early and work out. "~ "I read poetry to my dad. We both enjoy it and I feel replenished by our time together." ~ "I purchase small amounts of ready-made gourmet food and add it to basic rice or pasta. It saves time and my partner and I feel like we're having special dinners which cheers us both, without any extra work." ~ "I schedule my day much more carefully and am more aware of the small amounts of time I have for myself. I do a relaxing meditation when I am in the shower. I try to double up on my regular activities

  

like eating walking, bathing with meditation and stress reduction techniques." ~ "I have become an expert on breathing techniques. Relaxation training is a useful way for me to cope with things I can't change. Instead of complaining and getting mad about all the additional household tasks I have, I practice deep breathing throughout my house cleaning activities." ~ "I have a comfortable chair where I sit and drink chamomile tea, which my grandmother gave me as a child. It gives me just the relief I need to provide nourishment to my partner." ~ "I break down my tasks into several small acts of care rather than training to climb the whole mountain at once. I make a game of it -- trying to figure out how many small tasks I can get into one large one."
Novick also offers expert advice such as this from John Wellwood, author of Ordinary Magic, “... avoid confinement by repetitive tasks, limited activities, and habitual thoughts. Life contains many dimensions; they race beyond the familiar and enrich the moment. "
And finally, Novick states that "Pushing impulses down below consciousness; losing personal boundaries; giving in to self-neglect, exhaustion, apathy and even depression are all potential dangers for any caregiver. The cost to your own wellbeing, not to mention the implicit desperation that is conveyed to the loved among being cared for, is not worth it."
Which method of stress relief will work best is up to you. Personally, I don't think the meditation thing will work for me. I can't think that meditating with Kevin in my ear repeating demands for Sesame Street over and over will be an effective stress reducer and no amount of journaling will take away the stress of living in our car (It's not even an SUV!). But I think the point all of these authors want to impart is that no matter what your stress relief method of choice is, you've got to find one. We as caregivers and parents must find ways to stay healthy, replentish ourselves and rejuvenate from life's stresses in order to be the best that we can be for our kids.

Especially for Families of Preschoolers
From Healthy Beginnings Newsletter, Fall/Winter2001

Too Much of a Good Thing: The American Academy of Pediatrics has issued guidelines letting parents know how much juice is too much. Consider this:
Too much juice may keep older children from eating other foods filled with the nutrition they need.
Too much juice can cause diarrhea.
Usually high in sugar and calories, too much juice can cause obesity in kids.
Children between one and six years old should have no more than six ounces of juice daily; older children should drink no more than 12 ounces.
Toddlers should not be allowed to carry a juice cup or bottle as they play. This can lead to continual juice drinking and cavities.


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Expressing Talents and Exercising-
2 Steps to Greater Physical and Mental Health

The National Association for Down Syndrome, NADS, offers two reasonably priced videos in their recent newsletter to help bring greater physical and mental health to anyone with a unique twist--they feature people with Down syndrome.

Trying to get your child up and moving?...try NADS's Aerobics video. Pump up your cardiovascular system with exercises led by people with Down syndrome! And, need some inspiration to help you express your true, hidden talents? Check out Talents that Inspire, featuring "exceptional, talented people....that were able to excel in areas to "compensate" for their disabilities." Both videos ($20.00 each) are available through NADS by writing to NADS Videos, P.O. Box 4542, Oak Brook, IL 60522-4542

BUDDY WALK T-SHIRT CONTEST!!!

The Buddy Walk Committee is looking for a design for the front of the official Buddy Walk t-shirt this year. The contest is open to all ages and all areas—anyone and everyone. If your design is chosen, you could win 5 admissions to Buddy Walk 2004, plus t-shirts and admission to the Hospitality Tent, where you will enjoy all the same great cuisine from Buddy Walk plus much much more. Winner of the contest will also be honored with a trophy at Buddy Walk 2004 and will be recognized in our annual Buddy Walk newsletter.

All designs should be 2 color designs and must NOT include the NDSS Buddy Walk logo or incorporate any part of that logo. All logos will be placed on the back of the shirt according to copyrights. Designs should be no larger than 8 1/2 x11 and use only 2 colors. Deadline for submissions is August 1, 2004. Due to cost and time constraints, DSAGNO may not be able to return all unchosen designs. Chosen design will become the property of the Down Syndrome Association of Greater New Orleans. Send your submission(s) to T-Shirt Design C/O Buddy Walk Committee 2004, P.O. Box 55204, Metairie, LA 70055-5204. For questions or comments, contact DSAGNO Buddy Walk Committee at (504) 846-6903.

  
“Shaney”
by Laura DeLosSantos

I Love her more than life its self, she's my everything,
she makes me melt.

Her little hands, her button nose, I hold her close when she is cold.

Her smile like the morning sun, filled with laughter, filled with fun.

I love the moments we share together, her favorite songs, the lovely weather.

And on the swing she tells me, "high," at these moments I wonder “why”?

Why is it that when I'm so down and sad, she comes to me and it's not so bad?

She comes to me and sees my tears, not knowing why I cry, but touches my face and my eyes are dry.

My eyes are dry and I can see--see the most beautiful face staring back at me.

Our love is strong, so much it hurts. And through it all this I'm sure I've learned, she's the one I love, the one I care for. The simple way she strokes her hair, the simple way she says hello, my heart melts and sinks below.

My heart is yours, it's you that I'll hold on to, it's you that I'll look after when dark clouds come your way.

You hold my heart, as you will forever, because baby sister, our hearts are together.

Laura DeLosSantos is 16 years-old and attends Salmen High School. She is also older sister to Shaney Best who has Down syndrome. Laura and Shaney live with their family in Slidell, Louisiana. The Best family recently moved here from California. Parents Norma and Shanon say Laura is a fluent writer. Watch DSAGNONews for more from Laura

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From My Side...
By Craig Blackburn

In one newsletter a few months ago, I wrote an article about the NDSS Conference and said that I had met a friend, Heather Hancock. In another article, I wrote about Heather.
Heather and I have become good friends since meeting at the Conference and have emailed each other and we talk on the phone every week. Ever since we met, we started making plans for me to go to Oklahoma and take Heather to her Junior/Senior Prom on April 17th since she is a junior.
My mom made plane reservations for her and myself so that she would have the chance to meet Heather and her family, Mr. Bill (her dad), Ms. Lisa (her mom), and Jennifer (her sister 17 years old and a junior, too).
We sent my measurements to a tuxedo shop that Ms. Lisa suggested since we were coming into town the morning of the Prom. Mr. Bill and Ms. Lisa wanted me and my mom to stay with them and they, also, picked us up at the airport. Heather was having her hair and nails done so she could not come to the airport. I had met Ms. Lisa at the conference, but my mom had not met anyone. We both really liked Heather's parents. They were very friendly and nice. We went to Heather's house and met Jennifer. She was very nice, too. I had talked to Jennifer on the phone before.
We ate and left to pick up Heather at the hairdressers and pick up my tuxedo. I was really glad to see Heather and she looked very pretty. My mom had talked to Heather on the phone and thought she sounded very sweet and spoke very well.
We dressed and started taking lots and lots of pictures all over town. We had some taken at their house, some at photographers, some at a pond, some at friend's house and many other places. Heather looked so beautiful in her dress and I really liked my tuxedo. Everyone said we looked good together.
Our parents and Heather and I went to the same restaurant to eat before the Prom, but Heather and I had a table far from them at a window where we could see the lake. Heather said it was very romantic. We handled everything ourselves, ordering and paying the bill. It was great.
After dinner, we rode downtown to a hotel where Heather and I rented a horse and carriage for our ride to the Prom. It was about a two mile ride, and it was so much fun! It was romantic, too.
We got to the prom at about 8 PM and danced the whole night until it ended at midnight. I met Heather's friends and some of Jennifer's, too. Everyone was very nice and said they had heard about me. I danced so much that I had to take off my jacket because my shirt was wet.
After the Prom, Heather's PCA, Kristen, took us back to Heather's house and we changed for the After Prom party that was at a movie theatre. There was a disc jockey and so much food…cookies, hamburgers, cokes, everything. We could choose which movie we wanted to see. The parent's group was giving away door prizes which were money. Heather won $100 and I won $50. We got home to Heather's house between 3 and 4 AM. We were so tired that we both fell asleep in the movies.
The next day, we got up late and Heather's family showed us around Oklahoma City and we ate before we had to go to the airport.
I feel like I have been able to do a lot of things in my life, but I never went to my Prom. This was always a dream for me and now I can say I am happy because my dream came true and I was with the prettiest and nicest girl there.
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IRS Rules Obesity a Disease: Weight Loss Can be Tax-Deductible
American Dietetic Association, 2004 (As seen on Bridges For Kids Web site: http://www.bridges4kids.org).

Although April's income tax deadline can cause frustration, panic and expense for many people, recent IRS tax law changes offer some relief for a growing segment of the population - the now two-thirds of Americans who are overweight or obese.
The Internal Revenue Service's new rules lessen the tax burden on individuals who itemize their deductions and have large medical expenses, which now include treatment for obesity. With income tax forms due this month, are your nutrition services tax deductible?
The Internal Revenue Service ruled in April 2002 that "uncompensated amounts paid by individuals for participation in a weight-loss program as treatment for a specific disease or diseases (including obesity) diagnosed by a physician are expenses for medical care that are deductible, subject to certain limitations. The cost of purchasing diet food items is not deductible." This ruling allows taxpayers who pay for services related to their disease or weight condition to deduct those expenses.
Deductible medical expenses can include items such as bariatric surgery, approved weight-loss drugs and nutrition counseling services. Now that the IRS has defined obesity itself as a disease, taxpayers are able to deduct medical expenses related to obesity treatment ordered by a physician.
To take a deduction, a taxpayer must have participated in a weight-loss program for medically valid reasons. Simply joining a gym or a weight control program to "improve the taxpayer's appearance, general health and sense of well-being" without the guidance of a physician is not sufficient.
Still, according to the IRS ruling, diet or reduced-calorie food expenses are not deductible, even if they are an integral part of the weight loss plan. The IRS explains that people have to pay for food whether or not they are trying to lose weight.
The tax code indicates that a taxpayer's total medical expenses must exceed 7.5 percent of their adjusted gross income, and that they must itemize their deductions to qualify. However, few individuals spend enough of their income to qualify for the deduction. According to an IRS study, only 5 percent of taxpayers deducted any medical expenses in 2000. Taxpayers are advised to consult with professionals before taking any deductions in this area.
For more tax-deduction information regarding nutrition services, view the new IRS ruling (PDF) at http://www.irs.gov/pub/irs-drop/rr-02-19.pdf

  

Our House
A Parents Perspective...
By Kirby LaCour

When I was told that this issue was going to deal with health issues the first thing that came to mind was diet and exercise. Then I started sneezing and protested in adult fashion about my seasonal allergies (no kids present of course). I thought about a quick article to write about detecting the on come of allergies at our house.
Most of us know about seasonal allergies or, as in our case, suffer from them. Our kids were put on allergic medications only when needed by our doctors and told us how to spot the beginning of allergies before they get out of control and turn into sinus infections and other medical conditions. With this knowledge we have been somewhat successful in controlling simple allergy reactions and conditions. Again, I am not a doctor, but I am observant. Kids cannot always communicate what they feel or how they feel and in the beginning they were always at the doctors being treated for their allergies. With our kids I detect allergic conditions by looking for bags or dark spots under the eyes, the eyes watering, sneezing and of course the sniffles. Another thing I watch for is when my allergies begin because usually so will theirs. (My allergies are bad and the doctor has mentioned Arizona or New Mexico, but what would I do with Paula and the kids? I will just stay and fight.)
Non-medical items can also be used to help control some allergies in the home such as allergy rated air filters, dusting and vacuuming regularly and when the pollen and mold counts are high limit the amount of outdoor activity when you can. Especially, when the lawn is being mowed. Other means are having the air ducts cleaned, keeping chimneys clean and closed when not in use and using allergy free cleaners and laundry detergents.
According to the latest poll I saw at the doctor’s office on the informational television, Louisiana is not listed in the top 10 for serious allergy infections. Could have fooled me. It is at Our House.
Page 9

Profiles: “Heaven’s Missing an Angel”....Alexis Perkins
By Aline Perkins

Yes! Heaven is missing an Angel, because Alexis is here on Earth with us. It's 3:00 A. M and it has just begun--not an overhang, not party fever, but labor pains. I woke up approximately 3:00 o'clock in the morning, I turned over and I told my husband, Milton, “it's time." What was his reply? "Time for what?"
We began our journey to the hospital where I was admitted awaiting delivery of our baby girl. Three hours later, I can remember the doctor saying, "It's a girl." We were so excited! Our little girl just arrived and we can finally get to see her after a long wait. I was wide awake after surgery when the doctor came into my room and said, "Mr. and Mrs. Perkins it appears that your baby has Down syndrome. We need to run more tests to confirm my diagnosis." A battery of test were done on Alexis, my husband and myself. Test were done on Alexis to confirm the diagnosis of Down Syndrome and test were done on my husband and I to see if any one of us carried the gene. Neither one of us carried the gene, so why was our baby born with this? That was our question.
After doctors confirmed that Alexis was indeed born with Down syndrome, my husband and I were in a state of confusion. We had so many questions. What is this? Why us? Did I do anything wrong? What could we have done to prevent this? Thoughts were just flowing in our heads. One thought that really frightened me was, "What will people say"?
Well, after having Alexis in our lives, we really didn't care what people would say or think because we knew that God would not give us any more than we could handle. (Oh, yes! Did I mention that I was angry with God? I was angry with myself and with my doctor too.)
But now, we call Alexis "OUR LITTLE ANGEL" because she brought so much love into our family. Whenever I'm not feeling well or just had a bad day, she would come and give me the biggest hug and say “I LOVE YOU Mommy.” If she saw me cry, she would rub my back and say, "Don't cry mommy it's Okay.” She has been a caring child ever since I can remember. Even when she was in nursery school and one of the kids would cry she would give them a hug and say “Don't cry.”
Alexis is 7 years old now and she attends Johnson Gretna Park Elementary School on the Westbank. She is in first grade and she's in half-time inclusion. Alexis can write her

  
name, count to 20, she knows all of the basic colors, she can identify pictures, she know American Sign Language, and, she can swim very well I might add. She also went to karate school.
There is so much for our children to do without limitation. One word I had a hard time defining was "NORMAL." What is normal? Or, should I say how does society define “normal”? I was once told a story by one of Alexis's therapists, of how a woman's 18 year-old son was born "normal," had the best of everything, went to private school, captain of the football team, voted most handsome in high school and the story goes on and on. Until one day he was in a tragic accident that left him paralyzed from the neck down. He depended on the aid of his mother and others for the rest of his young life. The story was not told to make us feel any better, but to simply prove the point that normal has no boundaries. Everyone is normal. Alexis has two eyes, two ears, a nose, a mouth, two arms, two legs and a brain. What's so abnormal about that?
We are looking forward to letting Alexis participate in the Special Olympics. We attend church at Life Center Cathedral pastored by Bishop J.D. Wiley, where my husband is a Deacon and Alexis is soon to be a Junior Usher. She has so much energy when she's praising the Lord. We thank the Lord everyday for OUR LITTLE ANGEL. God has done so much in Alexis's life, and He has equipped us with everything we need to raise Alexis. We are Blessed! Abundantly Blessed. From our family to yours, God has blessed each and every one of us. He has given us a special gift. Keep trusting Him and He will put you on a path so wonderful. God only gives us as much as we can handle. We were the chosen ones. God knew that these kids would need the love and attention that no one else could give but us. May God Bless and keep each and every family.
Milton and Aline Perkins

Aline Perkins is full-time Mom to Alexis and lives in Harvey, Louisiana with Alexis and her husband Milton. Milton is retired from the Airforce Reserves and works for the US Postal Service. Alexis has 5 grown sisters!


Page 10
Pediatric Dentists Help Raise Awareness of Dental Issues Facing People with Down Syndrome
By Karen Scallan
We hear so much about health issues associated with Down syndrome. Once you’ve entered the community of people with Down syndrome and their families, you hear it everywhere. “Did you get a heart check up?” “How’s his reflux doing?” “Any ear infections yet?” “When did you have your child’s tonsils/adenoids out?” “How did the thyroid test turn out?” We just don’t talk about the dental stuff that much. It seems simple. Use regular, good hygiene and everything will be okay, right? But as it turns out, there’s quite a bit more to it than that. And, to start the conversation off, DSAGNO welcomed Dr. Claudia Cavallino and her father, Dr. Marvin Cavallino, both local pediatric dentists to give us the basics on dental issues for children with Down syndrome.
In their presentation, Drs. Cavallino and Cavallino showed us that many factors can influence your child’s dental care, including medical issues. When heart problems or defects exist, children will require antibiotics before most dental procedures. Compromised immune systems can contribute to the increase incidence of periodontal disease. The existence of atlantoaxial instability (increase in mobility between C1 and C2 cervical vertebrae) requires accurate positioning in the dental chair and during anesthesia. Leukemia can cause spontaneous gingival hemorrhage and the reduced muscle tone or hypotonia many children with Down syndrome experience can affect musculature of the head, neck, lips, cheek and tongue and can lead to tongue thrusting habits and anterior open bite.
Intellectual impairment and behavior issues may also influence your child’s dental health. Dr. Marvin Cavallino once told me regarding Kevin, “We can only do what he’ll let us do. The more he is able to cooperate and understand, the more we can help him.” Dental treatment should be tailored to the patient and may include shorter appointments and additional explana- tions of the procedures that Dr. Claudia Cavallino describes as “Tell-Show-Do.” Tell them what is going to happen, show them what you are going to do and then do it.
Introducing your child to the dentist’s office at an early age also helps. Your child’s first dental visit should occur by 12 months or no later than 6 months after eruption of the first tooth. That first visit should include an introduction to the dentist’s office for the child, counseling on dental development for the parent(s), oral hygiene instruction, diet and a determination of the need for fluoride, if necessary.
  
We all know that facial features in children with Down syndrome can be affected by that extra chromosome. Various dental features can also be related to Down syndrome, including delayed tooth eruption, abnormal eruption patterns, defects in the enamel covering of the teeth making them susceptible to decay, smaller than average teeth and a higher incidence of missing primary and permanent teeth. Short tooth roots are possible and can contribute to early tooth loss from periodontal disease.
Some good news: the incidence of cavities in the Down syndrome population is no higher than in the general population. The same recommendations are advised for children with Down syndrome as any others to minimize cavities...good oral hygiene, fluoride treatment in the proper amounts, sealants when necessary, regular exams and limited sugary foods and drinks. But early and sometimes severe periodontal disease can be common. This is related to hypotonia of facial muscles, open mouth breathing decreased immune response and poor hygiene. Periodontal disease can be treated with meticulous hygiene, frequent dental cleanings, antibacterial mouth rinses, antibiotics and may require a periodontist visit.
Some patients with Down syndrome can successfully undergo orthodontic treatment. When considering orthodontic treatment, parents and dentists alike should consider the severity of the problem, the patient’s ability to cooperate with the treatment and cope with the appliances in their mouth, and the effects of possible relapse after treatment.
The appropriate professionals to provide dental care to all children are pediatric dentists. Pediatric dentists receive 2 years of advanced training in child psychology and behavior management techniques, conscious sedation and general anesthesia, hospital dentistry, growth and development and children with special health care needs.
We need to continue to talk about dental, as well as health issues with new families as we meet them. This primer on dental care is an important beginning to keep the conversation going and make sure everyone knows the basics on dental as well as health care for children with Down syndrome.
Page 11

What does Dr. Leshin say about Gastroesophageal Reflux?
By Karen Scallan

Dr. Len Leshin has been maintaining probably the most comprehensive web site on health and other issues in people with Down syndrome anywhere on the web. Lately, with so many new parents whose children are experiencing the effects of gastroesophageal reflux (GER) I thought it might be a good time to revisit the issue so I checked out what he has to say about GER.
Dr. Leshin describes GER as "probably the most common gastrointestinal problem in childhood." He defines it as "the movement of contents of the stomach (solids or liquids) into the esophagus." This results in spitting up or forceful vomiting. Abnormal spitting up and vomiting can cause pneumonia, esophagitis or slow growth. And, low muscle tone at least contributes to GER if it's not the actual cause. Obvious signs include frequent spitting up and/or vomiting. Dr. Leshin says infants with reflux "will spit up or vomit after almost every feeding. ... Some infants and children will have GER but the stomach contents won't come up all the way to the mouth. Others will have just enough contents come up that they will have to swallow again, but not spit up or vomit. One condition called Sandifer syndrome presents with swallowing actions and an unusual head tilt, and reflux that may or may not be obvious. Any infant that seems to be continuously choking, gagging or making swallowing noises should be evaluated for GER."
He also warns that GER can produce apnea-temporary absence of breathing for 10-20 seconds which may be accompanied by a bluish color of the face. It can also cause "respiratory symptoms when stomach contents coming back up the esophagus trickle over into the airway. This can cause a chronic cough, a hoarse noise during breathing ("stridor"), wheezing, and repeated cases of pneumonia." The fussiness that infants experience with GER can be caused by the heartburn or indigestion feeling when stomach contents become acidic. Untreated Dr. Leshin states that GER "can eventually cause esophagitis, which is an irritation of the walls of the esophagus. Severe esophagitis may lead to bleeding and scarring of the esophageal lining."
A definitive diagnosis of GER involves various x-rays and should be discussed with your doctor. Some cases are diagnosed by endoscopy, where a fiber-optic tube is inserted in the child's throat to examine the esophagus. This is done in the hospital under sedation. Treatment can include such things as diet changes, positioning changes, medication, acid-reducing products. In extreme cases, surgery may be required when a child has failed to grow or if they have some chronic lung problems due to the reflux.
In any case, if your child is experiencing these symptoms, you definitely want to explore the possibility that GER is the culprit. Consult your doctor before the next sleepless night.

For more information on GER, the full text of Dr. Leshin's article on gastroesophageal reflux or other articles on health and Down syndrome, visit Dr. Leshin's web site at www.ds-health.com. Dr. Len Leshin is a pediatrician and the father of Avi, 10 years old, and Nathan, 12 years old. Avi has Down syndrome ("DS" for short) and has inspired him to write essays about children with DS. The information provided at his web site is considered general medical information for educational purposes and is not a substitute for the advice of your physician. If you think that your child needs medical attention, please go to or contact your physician or nearest health care provider.

  
The Down Syndrome Nutrition Handbook, A Guide to Promoting Healthy Lifestyles, Joan E. Guthrie Medlen, R.D., L.D.
By Karen Scallan

I hate to admit it, but I purchased this book last year at the NDSS Conference and haven't opened it once until I took a look at it for this article. What a mistake!
In the Section called Teaching Healthy Choices to Encourage Healthy Lifestyles, I noticed how the author really does write this book with people with Down syndrome in mind...starting from birth on up. This section in particular shows parents how to give your child choices in the food they eat and tailor's the information to specific methods of working with children with Down syndrome such as how to use picture symbols, and the like to offer your child choices.
The book starts off with the basics with sections on successful eating, breast and bottle feeding, nutrition and physiology 101. There are even sections for people with celiac and diabetes, weight management, food and school and fitness.
In the section called Cooking Corner, Joan Medlen shows you how to introduce your child to cooking and includes simple rules for working safely in the kitchen, the types of utensils and equipment that work best, how to use visual strategies and how to teach your child to grocery shop with a visual shopping list. These skills can be built upon as your child grows to adulthood. A section on menu planning is included and there are teaching aids and activities to help you teach your child about the food pyramid guide using picture symbols. Serving size is addressed as well as activity sheets to evaluate food choices and goals, Charts to help visualize success, health care check lists and Down syndrome growth charts.
You can bet we’ll be using this book now and in the future for nutritional guidance!
The Down Syndrome Nutrition Handbook can be purchased through WoodbineHouse press. www.woodbinehouse.com or call or write Woodbine House at 6510 Bells Mill Rd., Bethesda, MD 20817, 800/843-7323, 301/897-3570, fax: 301/897-5838.

 

 

• • • • • • • • • • • •
If you know of a family in need of information and referral assistance or support, contact DSAGNO at (504) 846-6903.
• • • • • • • • • • • •

Page 12
Local Company Creates National Buzz with Sling to Relieve Reflux or GER
By Karen Scallan

Our phone lines have been buzzing at DSAGNO with the latest new parents having questions about reflux or not knowing why their babies can't keep milk down. Many of us have experienced it too, I know Matt and I did with Kevin. Reflux can be a nightmare for parents and dangerous to kids when it's not diagnosed.
For those not familiar with Gastroesophogeal reflux (GER), take a look at the article in this issue. Our experience was that Kevin had reflux so bad as a baby he'd even throw up through his nose at times. After he began eating solid foods, he didn't through up so much so we thought he'd outgrown it. But we found during an endoscopy test for celiac disease that he still had the reflux and even though we didn't see the obvious symptoms, it was still dangerous for him and painful.
So what do you do? Well, reflux can be treated with a number of medications, the most common is Zantac and that's what Kevin takes. But a big help when Kevin was a baby was the Tucker Sling designed by a Mom with a child with a sever case of GER.
Tucker Designs describes the sling as a "one-piece positioning system used to support babies in an elevated position. The Tucker Sling attaches to a mattress like a fitted sheet. The baby is held firmly in place with adjustable Velcro straps, which allow for easy access."
The benefits of using the Tucker Sling are that it puts the child in a elevated position keeping stomach contents down in the stomach, the adjustable Velcro allows for growth, and quick release in case of emergency. In a hospital setting, the sling prevents infants from grasping at tubing and lines. It also comfortably positions baby on side, stomach, or back and is easy to use and clean.
Ochsner Foundation Hospital currently uses the sling, as well as many others around the country such as Cardinal Glennon Hospital, St. Louis, MO; Children's Medical Center, Dayton, OH; Presbyterian Hospital of Dallas, TX; University of Chicago Hospital, Chicago, IL; UCSD, San Diego, CA.
The sling is easily laundered (cold water, non-cholorine bleach, tumble try on low heat) and is available in 9 sizes for babies up to 30 lbs.
Leave it to a Mom in need of sleep to invent something so simple and so easy to use. To find out more about the Tucker Sling, log on to www.TuckerDesigns.com or give them a call at 888-236-9275. Tucker Designs is located in Metairie, Louisiana. Many insurance companies cover the cost with a doctor’s prescription.

 

Low Muscle Tone?
From NADS NEWS The Newsletter for The National Association for Down Syndrome, July 2003.

Most babies with Down syndrome are born with low muscle tone. Physical therapists work to strengthen their bodies so they can soon hold up their heads, roll over, sit, crawl and walk. In addition to these excellent services, there are some useful products which may help with the correct positioning of the legs and hips outside of therapy time. Consult with a physical therapist to see if they are appropriate for your child.
Hip Helpers sells support shorts for $12 a pair. Go to the website for an order form: www.hiphelpers.com. Print it out and mail it with a check or money order to Hip Helpers, Inc. 1332 Holly Point Road, Virginia Beach, VA 23454.
Add-A-Bands are for children who are not yet pulling up to stand and shorts with Add-a-Bands are for children who are pulling up or who are walking. Prices range from $34.95 to 44.95. Information is on the web site: www.add-a-bands.com. The phone number is 218-759-2559 and the address is Wiltse Crompton, NanaWeeWear, Inc., 2053 Magnoffin Ave., St. Paul, MN 55116.

• • • • • • • • • • • •
Health Care Guidelines for Children with
Down Syndrome

All parents and guardians of people with Down syndrome should be aware that there is a very specific set of health care recommendations that should be followed in treating a person with Down syndrome. These recommendations indicate, from birth to adulthood, what tests and examinations should be conducted at each stage of life. The recommendations are explained and included with them are growth charts specifically for people with Down syndrome. When interviewing a pediatrician, parents should be sure he/she is aware and familiar with the recommendations. A copy of these recommendations can be found at http://www.denison.edu/collaborations/dsq/health99.html and many other web sites or for more information call DSAGNO at
(504) 846-6903.

• • • • • • • • • • • •
Page 13
Special Health Care Needs Met Through CHSH

Children's Special Health Service (CHSH) is a program of services provided through the Louisiana Office of Public Health (OPH) for children in Louisiana who have special health care needs. The program has served over 7,000 children annually in Louisiana to date.
CSHS defines "children with special health care needs" as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.
The program works in partnership with other federal, state and local programs, public and private agencies, institutions and providers to meet the changing needs of children with special health care needs and their families and to serve as many as possible. CSHS also provides a leadership role in planning and providing family-centered, community-based, culturally-competent, comprehensive and coordinated services for children with special health care needs in order to minimize the child's disability and maximize his/her potential of enjoying an independent and self-sufficient life.
CSHS provides health care services for children with certain chronic physical illness or serious disability that has or may cause significant limitations in major life activities. These services could include X-ray, lab, EKG, audiology services or hospitalizations. They also provide physical, occupational, speech and home health services, medical equipment, family support services, medications, special diets, nursing, nutrition and social services and case management and referral services.
To qualify, children must live in Louisiana, be under 21 years of age, have a condition which 1) can benefit from rehabilitation services; 2) is covered by the CSHS; 3) requires long-term treatment by specialists, physicians and multidisciplinary staff and, they must meet the financial guidelines established by CSHS. For more information, contact CSHS at (504) 568-5055. A printable brochure
is available on-line at http://www.oph.dhh.state.la.us/childrensspecial/

Children's Hospital’s Introduces “CHAP” Program for Healthcare Assistance

Children's Hospital has developed a new program for children called CHAP or Children's Healthcare Assistance Plan for children who need healthcare assistance and but do not qualify for Medicaid.
The program assists families with incomes between 200% and 350% of the federal poverty guidelines, giving parents who don't qualify for Medicaid for their children, but who don't make enough to pay for extra therapy, healthcare needs and the like, a place to turn. To qualify, all you need is to not be covered by Medicaid and meet the income guidelines. The program covers charges for hospital services, participating physicians services and more. You can apply by picking up a CHAP Application in various departments at Children's Hospital or by calling 894-6166 and speaking to a CHAP representative. We also have a number of applications and information at the DSAGNO office. Call 846-6903 for a copy.

 
Welcome New Families!

Please join us in welcoming the following new families to DSAGNO.....
The Best Family of Slidell and their daughter,
Shaney
The Rolffs Family of Harvey and their son, Matthew
The Smith Family of New Orleans, and their daughter Parker

Way to Go, Weigh to Grow, www.healthyweightforkids.org
By Karen Scallan

I don't know much about the state of Michigan, but what I do know is they've produced a couple of great web sites for parents. I have always been amazed at the information on Michigan's website: www.Bridges4Kids.org, so when I saw that the Way to Go, Weigh to Grow website is part of another Michigan initiative, I wasn't surprised to find it so useful.
This guide to healthy weight in infants, toddlers and preschoolers is dedicated to all things to do with healthy weight and physical activity. Central Michigan University Public Broadcasting and Community Coordinated Child Care, a non-profit referral agency put together this web site as part of it's outreach efforts to address "Healthy Weight in Preschool Children" as one strategy to potentially result in fewer preschool children becoming overweight or obese.
Way to Go, Weigh to Grow shows parents how to make a healthy lifestyle fun so that kids don't even realize you're slipping them healthy food and getting them to exercise. The web site's recipes include things that kids will love like PB&G (Peanut Butter and Graham Crackers), yogurt milk shakes, quick and easy nachos, Jell-O fruit sundaes, fruit pizza, low fat chilli fries, low-fat sloppy joes, reduced fat macaroni and cheese and many other kid-pleasing recipes. The Get Moving page has fun activities like the Animal Freeze Dance for ages 1-3 and "Hot Hoops" for ages 4 and up (picture hula hoops and lots of jumping!)
Did you ever think you might actually want the kids to play with their food? The "Play" page includes just that... Make monster toast with your kids, celery wagons, egg boats, fruit faces and other edible art. Activity and food pyramid charts are included. And for a little more fun, there are color sheets you can print at home with kids favorite characters from Barney, Sesame Street and Teletubbies. Parent resources include web sites with more health information for parents and breastfeeding information.
So whether you're looking for a fun way to get the kids to eat something healthy for a change or just looking for some new things to do on one of our rainy Saturday afternoons, Way to Go, Weight to Grow is a great place to start.
www.healthyweightforkids.org

Page 14
WEB SITES

Mechanical Innovations
Custom and specially-made training wheels for all bicycles, including children and adult size for those with difficulty balancing on a bicycle.
www.fatwheels.com

Medicaid Action Center
Medicaid, the health care program for the most vulnerable among us, is under fire. The Administration, some members of Congress, and some governors would like to change Medicaid in ways that would end the guarantee of health care for millions of seniors, children, people with disabilities, and others who have nowhere else to turn. The Medicaid Action Center is a place for those who want to preserve Medicaid.
http://www.familiesusa.org/site/PageServer?pagename=Medicaid_Action

SNAP
Special Needs Advocate for Parents
Information, education, advocacy and referrals to families with children with special needs of all ages.
http://www.snapinfo.org/

Dycem.com
Dycem Ltd. has been manufacturing non-slip products used to stabilize objects, improve grip and stop items slipping in numerous situations. Great to use for beginning feeders to keep bowls from slipping. Use for therapy and rehabilitation.
www.dycem.com

Linda Kane, Hope And A Future, Inc.
See our article about Linda Kane's visit to DSAGNO on July 30th.
http://www.hope-future.org/

Manners in the Real World: Basic Social Skills
Shows students from upper elementary through high school how to act during some of the most common interactions between people. Features clear, straightforward demonstrations of appropriate and inappropriate behavior in a fun way to keep adolescent attention spans engaged. Program covers: personal hygiene, conversations, introductions, telephone and internet use, table manners, behavior for ladies and gentlemen, manners in public, serving as a host and being a guest. Watch one subject at a time, or play the entire video. Entertaining and helpful, especially effective with young people who don't easily pick up social skills by themselves, but need clear, specific examples of appropriate manners and behaviors in every-day situations. View a clip, read reviews and order at
http://home.att.net/~coultervideo/manners.htm

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
Home of "Intensive Care Parenting." (TM) and GERD Nerds (TM). offering support and information on pediatric GERD and related disorders since 1992. PAGER is a 501(c)(3) non-profit membership organization that provides information and support to parents, patients and doctors about Gastroesophageal Reflux (GER). Much of the information applies to adults. PAGER provides plain English

  explanations of the disorder, treatment, diagnostic tests and medications; provides a forum for you to share your experiences and learn from each other; is collecting demographic information for GER research purposes; is soliciting individuals to participate in studies about GER; is conducting the first ever study of genetic reflux (hereditary acid reflux) in collaboration with Allegheny General Hospital, Center for Genomic Sciences; has volunteers waiting to return your phone calls and e-mails. Spanish translation of brochure available on line.
http://www.reflux.org/

Gut-instincts, When you Know Something is Wrong with Your Child.
Gastroesophageal reflux awareness campaign.
http://gut-instincts.com/

Tucker Designs
Tucker slings for children with Gerd. See our article inside this issue.
http://www.tuckerdesigns.com/

Ask Doctor Sears
William Sears, MD and Martha Sears, RN. After raising eight children and practicing pediatric medicine for more than 30 years, the Sears have answered questions from thousands of parents. Millions more have sought our advice through our 30+ pediatric books, articles in parenting magazines, and their appearances on more than 100 television programs such as 20/20, Donahue, Good Morning America, Oprah, CBS This Morning, CNN, NBC's Today Show and Dateline. Find information on Medicine, illnesses, sleep problems, fussiness, discipline and behavior, family nutrition, feeding, A-Z, frequently asked questions and pediatric news updates. http://www.askdrsears.com/

Hip Helpers
Support shorts for hip problems. See our blurb inside this issue for more info. www.hiphelpers.com

Add-A-Bands
For children not yet pulling to a stand and shorts with Add-a-Bands for children pulling up or walking. See our blurb inside this issue for more info. www.add-a-bands.com

Coming Soon!

The theme of our next issue will be Self-determination and Independence. Send us your inspiring stories about your child making choices that will determine his/her life's path! Send us your questions and we'll try to find the answers! Look for exciting info on Buddy Walk too... That's right, it's just around the corner. If you have an area of interest, question, concern, tip or other item for DSAGNO News, please contact Karen Scallan
at kscallan@cox.net or Ann Lafourcade at
blafourcade@aol.com or call us at (504) 846-6903.