Tuesday, October 25, 2011

Stacylee's Story

Stacylee is a gorgeous, spunky, red-headed 4.5 year old that was diagnosed with autism (low to moderate level autism) when she was three. She has speech delays but is verbal. She has some motor planning issues and is a sensory seeker. Her strength is her physical coordination and strong will. Her other strength is an exceptionally committed and loving mother, Kelly, who keeps Stacylee's recovery a priority even though the dietary commitment is extremely rigorous. Kelly is a single mom who works full time and is involved in a local leadership program. Kelly reminds me of the saying, "If you want something done, ask a busy person."

In late June, Kelly did what she calls "SCD bootcamp" where she broke Stacylee down and built her back up. Prior to SCD, Stacylee was in constant motion and had very little attention span. Attention boosting drugs were suggested but mom thought she would give one more dietary intervention a try (Stacylee was already GFCF prior to going on SCD) first. The die off was tremendous.

Poor Stacylee was sick, lethargic, and vomiting off and on for the first four days. Kelly was very scared for her and tempted her with all kinds of wonderful SCD intro foods, but Stacylee just needed time for her belly to heal. Her body's intuitive wisdom told her not to eat. On day five Stacylee was no longer vomiting but was still not eating foods. On day six Kelly was very, very worried and took Stacylee to a local pediatric emergency group and happily discovered a very supportive doctor. Kelly explained that the food was being made available but Stacylee seemed to be starving herself.

The doctor told her she was doing a great job and to stick with it. He also told her (and I now repeat this advice to parents with a sick kid on intro, almost as a mantra) that as long as Stacylee remained well hydrated, most kids can go a couple of weeks without food before it becomes an emergency. Not that any of us ever wants to see a child refuse food for a couple of weeks, but it is good to know there is some leeway in the beginning of this diet when the kids refuse to eat! With his words alleviating her worry and some extra encouragement Kelly doubled-down and forced Stacylee to eat. She used Applied Behavior Analysis (ABA) therapy techniques to coax her into eating broth, chicken, and butternut squash.

Despite Stacylee's all-time low when she did not have the strength to physically walk to bathroom and had to be carried, the words began pouring out with remarkable clarity. Somewhere around day six or eight she said, "I want to fly the octopus kite" when she walked past her favorite kite in the garage. Prior to SCD intro she simply said, "Octopus, octupus!" Kelly counted up the words in the sentence and wrote it in a diary. To see the language skills increase even while Stacylee was physically weak gave Kelly strength to continue.

Applegate Farms nitrate-free bacon (less than 2% sugar) was the transition object that Kelly used for Stacylee. [Just to point this out, it is *not* an SCD legal food] Bacon was used to get Stacylee to eat broth and was a staple for the first two months. Kelly put bacon grease in meatballs and provided a bacon "chaser" for vegetables and fish. She used it only as a reward and eventually switched to an SCD "legal" bacon from the farmer's market.

Once Stacylee got used to the taste of broth her body craved it. She was eating 8-10 bowls a day. Kelly's biggest fear about going back to work was that Stacylee would not be able to self-feed the broth because of the fine motor skills needed. This was a big deal because Stacylee is in a special program with other kids and was not going to have the one-on-one attention her mother could give her during those first two weeks. Because of her motor skills and motor planning issues Kelly fed her like a newborn for 15 days, but Stacylee figured it out once her mom let her. One day Kelly turned her back to reheat more soup and took too long to come back and feed Stacylee. When she turned around, Stacylee was feeding herself.

Today Stacylee's language skills continue to progress. Kelly considers SCD the most important intervention she has tried for her daughter. Kelly reports that Stacylee is more present, clearer in communication, and more verbal overall. Stacylee has always been a happy child, but now is more at ease in social situations and seeks out interaction and affection. She is able to sit still and play her iPad, choosing games and navigating choices without requesting help.

Kelly also reports that Stacylee's speech therapist and occupational therapist both noticed the difference immediately after two weeks of SCD intro. They noticed and commented on the "light in her eyes" and her increased ability to sit still for learning activities. Stacylee is more open to learning now because she can physically sit for longer periods of time and her increased verbal ability allows her to also make more choices and process faster. For example, when her OT says, "Do you want to play on purple swing or the trampoline?" she immediately gives an answer and says "purple swing." Those choices previously were painfully slow and often did not materialize.

Stacylee's physical appearance has also undergone a transformation. She has gained another 3 lbs since late June and for the first time in her life has pink in her cheeks, meat on her bones, and the purple circles under eyes are gone. Kelly's mother recently visited them for first time since Christmas and broke into tears when she saw her. She said, "OMG, look how healthy she looks!" Today Stacylee still receives occupational therapy, speech therapy, music therapy, and some basic nutritional supplements to aid her recovery but Kelly credits SCD with the biggest change for Stacylee.

These days Stacylee has also developed a sense of humor. Prior to SCD she was so literal that her mother could not joke. But now she initiates jokes of her own, telling her mom, "Bianca is a baby!" and waiting for a reaction. Bianca is their dog so Kelly says, "Noooooo, Bianca is a dog, silly!" And to that Stacylee giggles with pleasure.

Kelly credits a few critical components for her success in implementing SCD: prayer, patience, and building a support network. To build her network she talked with others on SCD and communicated with everyone who would need to help implement the diet when Kelly was not present. An old African proverb says it takes a village to raise a child. Kelly has built this village for Stacylee and continues to make important choices for her daughter's recovery.

No comments:

Post a Comment