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Meet a Child with VLCAD

Walking with Landon

GEMSS would like to thank Landon and his mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

LandonRegan describes her son Landon as a very energetic, smart, and stubborn red- head! He is ‘all-boy,’ she says. Landon is currently in a day-care/preschool in his southwestern town in the USA.

Landon’s Newborn Screening revealed an abnormality but the follow-up test was normal. For 9 days, the diagnosis was undetermined and a blood draw on the ninth day was abnormal. At 3 weeks, he saw a geneticist and a biopsy of his skin was done. Further testing then showed that he did have the diagnosis of VLCAD, and it was the non-cardiac version. However, he is the only person known to have this exact mutation. His sister and his mother are both carriers of the mutation.

Landon’s prognosis is good and he has had four big scares when his blood sugar dropped rapidly and he was hospitalized. His family always carries glucose and they have a protocol that they follow. If his blood sugar gets below 70, they call the doctor and if it is below 65, they get to a hospital. “He has a very particular whine when his blood sugar is dropping” so they are able to tell when he is dropping.

In school, Landon is able to eat the healthy snacks they serve as they are low-fat. He knows what he can and can’t eat and will let people know what is okay for him to eat. He only has 23 grams of fat every day and the school staff has been very helpful in making sure he eats and drinks according to the plan. He needs to drink Gatorade on the playground and the staff has him drink every 20 minutes or so when he is active. The school also has a letter from the geneticist outlining when to call and when to seek medical attention. Landon himself can tell when his sugar is low and will often say” I need some OJ or Gatorade – my legs are starting to hurt.” The school team has listened, asked lots of questions, and worked well with the family to make sure Landon’s school experience is successful.

Landon is doing well developmentally and is “always ahead of the curve,” according to his mother. He was home for 3 ½ years as they were advised to keep him away from germs. He did not have a lot of interaction with other children until he got to preschool so he is developing more social skills in school.

Regan advises teachers to listen to parents. “Ask them to come in and talk,” she says. She has heard some other parents say that they ‘don’t feel heard’ and teachers sometimes ‘treat them like they do not know anything.’ That has not been true in her experience! Landon is even doing some teaching in his class. For example, the school was doing a unit on hospitals and the teachers were very impressed that Landon was able to tell the other children what it is like in the hospital, how they check for blood sugar, how it hurts for a minute, “but that’s okay because then they give you a toy!”

For more information on Landon, you can see his blog here!

 

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