Search & Respond.

Test to measure learning disabilities

S My 6-year-old daughter has cerebral palsy. She has significant delays in fine and gross motor skills. She is entering kindergarten in September. Because she refuses to be tested (She will not answer questions for the school psychologist.), I am unsure of which type of class she should be in. She will begin kindergarten in a Life Skills class primarily because of her physical limitations. I don't know if she has mental retardation or if she has specific learning disabilities. Does anyone know of any type of test that I could perform at home? I would also be interested in books that provide a checklist that would give me a better idea of how to identify her problems and the best way to teach her.

--JH, via the EP Web site

Bathtub dilemma

S My son is 4 years old and has severe multiple disabilities due to complications from cystic fibrosis. He is ventilator dependent and has little or no head or trunk control. We are currently bathing him at the bedside in an infant bathtub. However, he is 33 inches tall and does not fit well into the tub. Our bathroom is too small to accommodate us and his equipment, and remodeling is not an option at this point. He's really too small for a regular bathtub but too tall for the infant tub. Does anyone have any creative solutions?

--VL, via the EP Web site

Feeling isolated

S My daughter, 4, has Angelman syndrome. Her symptoms include microcephaly, uncontrollable laughter, seizures, absent speech, feeding difficulties, and sleep problems. The problems we face are sometimes more than we can handle. We feel lost, alone, and isolated. We are lucky to find a physician who has even heard of this syndrome. I feel my daughter is not getting the proper medical care. My daughter started having seizures at age 3. The medication prescribed for her was accidentally written up by the pharmacy for 10 times the correct dosage, and she had to be hospitalized. She hasn't been the same since. Instead of laughing uncontrollably, I sometimes find her, and myself, crying uncontrollably.

--TK, via the EP Web site

EDITOR'S NOTE

Parent to Parent Programs provide support and information for parents who have a child or family member with special needs. They also provide a matching service, where a parent who is looking for support for a particular disability is matched with a trained parent. To find the Parent to Parent programs in your area, contact The Beach Center on Families and Disability at 3111 Haworth Hall, University of Kansas, Lawrence, KS 66045; Phone: [phone].

Daughter has episodes of unusual behavior

S Our daughter is 4 years old and was a typically developing child. Four months ago, following a family trip to Tennessee, she began exhibiting some unusual behavior, which has continued. She begins to breathe in a very labored fashion--almost hyperventilating. This leads to lip smacking, teeth grinding, disorientation, very slurred speech, loss of balance, and if the spells last long enough, she will hit, pinch, or bite and repeat two phrases: "I'll hurt--" or "I hate--."We can sometimes distract her out of these spells and she seems to do better when she is in a swimming pool or at the beach. She has had a normal MRI (magnetic resonance imaging) and three EEGs (electroencephalograms). The EEGs showed a slowing of brain activity during the spells but no seizure activity. Her pediatric neurologist believes that she can be experiencing seizures that are not showing up on the EEGs. Our daughter has been on Tegretol with no response. Her doctor also prescribed Periactin, thinking migraines could be causing her behavior. It didn't help. Does anyone have a child with this type of behavior?

--PP, via the EP Web site

Severe cramping

S We have a 16-year-old son with hydrocephalus and epilepsy, who is nonverbal and partially ambulatory. About seven months ago, he started having large, soft stools followed by severe pain/spasms. He seemed fine until recently, when he had another another large bowel movement and the pain started all over again. We went to a gastroenterologist, but he didn't seem too interested and put him on Enulose (a drug used to treat chronic constipation). We have had stomach x-rays, blood and urine tests, and a CAT scan of his intestines with no luck. Our son is experiencing pain that seems to come in five-minute cycles. We now have him on Donatal for the spasms and Tylenol with Codeine for pain. He also takes Depakote sprinkles and Tranxene for seizures. We are at a loss as to how to proceed. We are trying to get in to see another pediatric gastroenterologist. Does anyone have a child who has experienced similar problems? Our son cannot continue much longer this way. He has already lost four pounds, which he can't afford, and being in constant pain is taking its toll.

--KC, via the EP Web site