Lost and Found

Partial section of a great story written about my daughter...

LOST AND FOUND: "Food as treatment for Autism Spectrum Disorder. Changing a diet transforms a life."

When you see Kaitlyn Ford with her friends, you might not notice anything unusual about her. If she stands out at all, it’s most likely because of her long red hair and bright blue eyes. It still amazes parents David and Kathy Deery Ford of Norwood, Massachusetts, that 6-year-old Kaitlyn fits in so well, since just a few short years ago she was lost in her own world, unresponsive to anyone but her mother. Kaitlyn was only 19 months old when her mother began to worry. The toddler was a terrible sleeper, waking every two hours thirsty and drenched in sweat. She had bright red cheeks and chronic loose bowels. Most troubling, she had very little language. As she approached her second birthday, Kaitlyn spoke just a few words and used them inappropriately. Kathy knew that all children develop at their own pace, but it troubled her to see how different Kaitlyn was from her sister Nicole, who was 2 years older. Family members were low muscle tone, lack of eye contact and her obsession with playing with hair—her own and any she could get her hands on.

Shortly before the little girl’s two-year check up, Kaitlyn’s aunts confronted Kathy and David. “My sister and David’s sister were really concerned and they decided to talk to us together. They told us they were afraid that something was really off with Kaitlyn and they suggested it was autism,” says Kathy. “I’d suspected for a long time that something was wrong but it was easy to let David talk me out of it.” With David still insisting that Kaitlyn was fine, the parents consulted Kaitlyn’s pediatrician, who suggested an evaluation. Kathy scheduled it immediately and two child development specialists came to the Ford’s home. As they tested Kaitlyn, they were concerned that they couldn’t engage the little girl in play or get her to make eye contact. She wouldn’t use any of the age-appropriate toys they brought.

Of most concern, however, was how little language Kaitlyn had. Kathy watched the evaluation anxiously. “I’d been reading about autism ever since my sister brought it up. I knew it would explain Kaitlyn’s behavior but I was hoping they’d assure me that it wasn’t autism. It was really frustrating but mostly I was just scared,” says Kathy. “They wouldn’t give me a diagnosis. All they would say is that we needed to see a developmental pediatrician.” Since every specialist in the area had a long waiting list, Kaitlyn’s physician stepped in and made some calls. Within three weeks, the family was sitting with Rita Delollis, MD, a developmental pediatrician practicing in Braintree, Massachusetts.

As part of her assessment, Delollis wanted to watch Kaitlyn playing and interacting with her family and with toys. The doctor offered Kaitlyn a family of dolls. “But Kaitlyn just didn’t understand that the dolls represented a family—or people for that matter. They were just objects to her,” says Kathy. Next Kaitlyn was offered blocks. She immediately sat down and began to build a tower. This didn’t surprise her family, because building block towers was Kaitlyn’s only form of playing. “She was obsessed with making block towers,” Kathy says. “But if anyone disturbed the towers, she would throw epic tantrums and cry hysterically." Kathy purposely knocked over the tower so that Delollis could see Kaitlyn's reaction. After a brief observation, the doctor pulled no punches.

Although she hesitated to label so young a child, she told the Fords that Kaitlyn had PDD (Persistent Developmental Disorder), a developmental disability on the autism spectrum. After making the diagnosis, Delollis left Kathy and David alone to talk for a few minutes. Kathy, while devastated, had another problem: David had not been reading about autism like she had and he didn’t understand the gravity of the news. “It’s okay!” he told Kathy. “She doesn’t have autism!” When the doctor returned, Kathy said to her, “You have to tell him what this means.” Gently but firmly, Delollis explained that PDD is a form of autism. “David was simply crushed,” Kathy says. “He's a funny, happy-go-lucky guy—the class clown. When he finally got it,’ he broke down and cried,” Kathy says. “In a way, it was easier for me to hear the diagnosis—I was expecting it. But watching David process the news broke my heart all over again. It made it all so real.” The doctor helped them formulate the next steps for Kaitlyn’s treatment and care. Together the parents resolved to do everything in their power to “bring Kaitlyn back.”

The rest of the story can be found in this months edition of "Living Without Magazine - www.LivingWithout.com October/November 2009. A must read article that I recommend anyone interested in a Casein: Gluten-free Diet. Also check out www.allcaneat.com where we have asked permission to post the article in its entirety.