Explaining Your Child’s Fatty Acid Oxidation Disorder to Others
Having a child with a metabolic or fatty acid oxidation disorder can be hard enough. You have to worry about their blood sugar levels as well as how long it has been between meals. They may have more frequent visits to the hospital than other children their age. The last thing you want to worry about is explaining your child’s FAOD to other people. But, explaining your child’s FAOD to others can help keep them safe.
Telling People About Your Child’s FAOD
Explaining a fatty acid oxidation disorder to someone can be tricky, but if your child has dietary restrictions or other needs relating to their FAOD, then telling people is a must. As providers of information on fatty acid oxidation disorders, we are sharing some tips on explaining your child’s fatty acid oxidation disorder to others.
Don’t Be Ashamed
As parents it is natural to feel guilty when there is something wrong with your child, but the presence of a fatty acid oxidation disorder is not something that you have control over. There is no need to feel ashamed or like you did something wrong. Most people simply do not know anything about FAODs, so this is your opportunity to educate them on these disorders.
Focus on What They Need to Know
Most people aren’t concerned with the biological processes associated with the MCKAT deficiency or about how the mitochondria works. What is important is what they need to know to keep your child safe. Focus on any limitations or restrictions your child needs to follow as well as any health red flags they should look out for.
Create A Written Summary
If someone asks you casually, you can easily explain in a few sentences, but if someone is watching your child, you may need to go into more detail for your child’s safety. Instead of risking forgetting something important, type something up and have it accessible or your phone so you can easily text it to them.
Direct Them to The Right Information
In the case of family member or close friends, they may be more curious about the ins and outs of your child’s disorder. Unfortunately, there can be a lot of misinformation on the web about these metabolic issues, so make sure you direct them to a trusted source. At the International Network for Fatty Acid Oxidation Research and Management (INFORM), one of our goals is to be a reliable source of information for loved one and family members. We even have experts to answer your questions on fatty acid oxidation disorders.
At INFORM Network, we want to be a source of support for families of children with fatty acid oxidation disorders. If you have more questions or concerns, please visit our website often.