Rare Disorders  
Tracey Sandrock, Division Director
Vol. 10, Issue 3, p. 34-36
  Reprinted with the permission of The MAGIC Foundation
1327 N. Harlem Avenue, Oak Park, IL 60302-1376
1 (800) 3 MAGIC 3
(708) 383-0808 Fax: (708) 383-0899
E-Mail: mary@magicfoundation.org

     MAGIC has been a very important organization in my life and in my son's life. During the past four years I have served in the capacity as a division director for MAGIC. It has been a position I have enjoyed and it has allowed me to help many different families. A number of you have successfully started your children on growth hormone and other treatments. You have benefited and I have had enormous personal satisfaction.
     My personal situation has reached a crossroad that has necessitated that I make some changes. My son Jordan has delayed visual development. This summer we traveled to see Achiever's Unlimited, our 9th eye care professional. An evaluation with these wonderful people has resulted in a vision training program that we execute at home. For Jordan to achieve reading and writing readiness, he must master basic vision skills. Unfortunately, the school district has little understanding of visual skills and vision processing and how it relates to learning, reading and writing. For Jordan, we are now embarking on a home school program and continuing to execute his vision therapy program.
     Home schooling I find is very demanding and has forced me to cut back in other areas. Even though I have loved being a division director, I find I must now relinquish this duty. My successor is Tracey Sandrock. Tracy is a very knowledgeable and highly energetic individual. She is committed to MAGIC, and to helping children.
     While my role with MAGIC is changing, I am no less dedicated to this outstanding organization. I am still available for questions and information. My heart is with MAGIC. I thank Mary Andrews, the division directors, and the MAGIC families for their love and support.
     Keep On Growing!!!!
     Linda Blevins

     According to the Celiac Disease Foundation, one of the most missed diagnosed reasons for Failure to Thrive in children is Celiac disease. Celiac disease is the inability to break down and digest the protein gluten that is found in grain products of wheat, oats, barley and rye. The book, Prescription for Nutrition Healing by Dr. Balch, M.D. discusses the symptomology of Celiac disease.
     "Gluten contains a protein ALPHA-GLIADEN. In people with Celiac disease, this protein causes a reaction in the mucous lining of the intestine. The villi lining the small intestine suffer damage and destruction, which impairs the body's ability to absorb vital nutrients. Malabsorption (iron, folic acid, B12, calcium, zinc, etc.) becomes a serious problem, and the loss of vitamins, minerals and calories result in malnutrition, despite an adequate diet. Diarrhea compounds the problem. Because Celiac disease impairs digestion, food allergies may also appear.
     Celiac disease affects both adults and children, and can appear at any age. It often appears when a child is first introduced to cereal foods, at around three or tour months of age. The first sign are usually diarrhea, weight loss, and nutritional deficiencies such as anemia. Other symptoms include nausea; abdominal swelling; large, and frequently pale and/or light-yellow colored stool, foul-smelling stools that float; depression; fatigue; irritability; muscle cramps and wasting; joint and bone pain.
     Infants and children may exhibit stunted growth, vomiting (reflux), and intense burning sensation in the skin, and a red, itchy skin rash called dermatitis herpetiformis (perhaps 10% have this). A baby with Celiac disease may gain weight more slowly than normal or may lose weight. The infant may have a poor appetite, gas, and offensive smelling bowel movements. The child is likely to have an anemic, undernourished appearance. Ulcers may develop in the mouth.
     If left untreated, Celiac disease can be quite serious, even life threatening. Bone disease (osteoporosis), central and peripheral nervous system impairment, internal hemorrhaging, pancreatic disease, infertility and gynecological disorders are some of the long term maladies that can complicate Celiac disease. Certain autoimmune disorders can also be associated with Celiac disease, including insulin-dependent diabetes mellitus, intestinal lymphoma, systemic lupus erythematosus, thyroid disease, scleroderma, myasthenia gravis, Addison's disease, rheumatoid arthritis, and Sjogren's syndrome."
     A recent study found that only 57% of celiac's present with diarrhea. Also preliminary findings indicate a 4.8% positive finding of first degree relatives and a 3.2% finding of second degree relatives of celiac's.
     An excellent source of information on Celiac disease is the:

13251 Ventura Blvd. Suite 1
Studio City, CA 91604-1838
     In July I took Jordan to his 9th vision specialist. Jordan is very far sighted and his right eye has esotropia (it turns in). Both of these visual conditions have been corrected with glasses. Bifocals were added to facilitate converging of his eyes for close work. Yet, Jordan still experienced what I considered to be vision issues. Seldom did he color, cut with scissors or other types of close work yet he could swim and roller blade. He loves books but could not tolerate more than three or four at a time. He has a very good attention span and can sit through an entire movie or play with toys for long periods of time, yet he could not complete tasks at school.
     At school he would exhibit frustration and low attention span. He could not complete a task without being constantly monitored. Skills like learning the alphabet and counting have been elusive. Still, the activities that Jordan chooses at home, the level of curiosity he exhibits, his ability to make decisions and choices, clearly show high level, cognitive functioning. Resolving this dichotomy of behavior has been difficult.
     At last the professionals at Achiever's Unlimited and Therapeutic Resources have provided key information and programs to improve Jordan's visual skills. Achiever's Unlimited discovered that Jordan was not using his bifocals. He was looking over them which was making his head "hang down" and negatively impacting his posture. It had even hindered his vision even more. They also found he was not using his peripheral vision. To walk across a room, Jordan was going into macular vision (central focusing) and would have to race across a room to get to the object he wanted.
     From a body stand point, Jordan's eye tracking skills were delayed. For instance a simple exercise of "batting" a balloon, he could only accomplish twice in a row. He also did not alternate hands. His visual skills were found delayed in several other categories.
     Achiever's Unlimited has outlined a vision exercise program with a number of exercises. Already we have seen improvement on his program. His body movements are better and more coordinated, his balloon batting is up to 12 to 14 times, he does more coloring and drawing for longer periods. With this vision therapy program we hope to bring Jordan's vision skills to the point he can develop reading readiness and into actual reading!!!


  Revised: September 13, 1999.