How to Help Children Deal With Chronic Conditions

When my son was first diagnosed with reactive hypoglycemia, it was difficult for him to accept that he was “different” from other kids, and that he couldn’t (amongst other things) drink soda or eat cake any more. Eventually we filled our “toolbox” with ways to help him deal with his chronic illness. In addition we discovered several tips to help adults to understand his limitations.

• Explain your child’s illness in language that your child will understand.
  When we first found out Leo had reactive hypoglycemia, I explained that it was the “opposite of diabetes.” That is, instead of having blood sugar levels too high, he had blood sugar that was too low. He now tells everyone that he has the opposite of diabetes. Not only did simple phrasing help him, but it also helps him explain it to other people who have never heard of reactive hypoglycemia. Let your child also know what procedures are going to happen and why in an age-appropriate way that they can understand.
• Let your child know that they are not alone.
  According to statistics from The University of Michigan, 15% to 18% of children in the US have a chronic health condition (including diabetes, heart conditions, and other long-lasting ailments). That means your child most probably has someone in his class, or maybe even sitting next to him, who is also living with a chronic condition. Letting your child know that they are not alone is vitally important to stopping them from feeling alienated. Leo found out that one of the Jonas Brothers (his favorite band) has a blood sugar problem–diabetes, and tells everyone he can about how he has something in common with one of the Jonas Brothers.
• Be there for your child during painful procedures

When Leo had to have a Glucose Tolerance Test, he had to have his blood drawn several times over the course of a few hours. He was old enough to understand that we needed to find out if he had a serious disease (which I reassured him, was treatable) and that a few painful pricks now would help him avoid further trips to the emergency room (for hypoglycemia-induced seizures).

• Give your child limited choices
  In general, children shouldn’t be allowed to make choices about their healthcare–their brains aren’t developed enough to make those choices. Even teenagers tend to underestimate risk. How you approach the topic of medical procedures and health care choices with your child depends on their age but there is one universal trick: make your child feel like they are part of their treatment plan. For Leo, I never gave him a choice about eating sugar or not. Instead, I took him to the store, found the organic/no sugar cookies and asked him “Do you want the blueberry or apple ones?” Likewise, when we went to have his blood drawn it was “Do you want to play on the laptop while we wait, or do a puzzle book?” Presenting your child with limited choices gives them the feeling that they have a choice.
• Reassure children that their disease isn’t their fault
  Reactive hypoglycemia runs in our family, so does breast cancer. But even if your child doesn’t have a hereditary condition, make sure they know that their condition isn’t because of something they did: a diabetic child doesn’t get diabetes from eating too many cookies and a teenager doesn’t get cancer because they sneaked a cigarette in the locker room.
• Find support groups for teens so that they can network.
  The Koop Institute is one place where teens with chronic illness can share stories, ideas, advice, and poetry.
• Educate other adults about your child’s condition
  We had more than a few issues with school. I thought it would be enough to tell Leo’s teachers and the school nurse about his condition. But we forgot the cafeteria staff, who were more than willing to dump Frosted Flakes and orange juice in front of Leo (which he found impossible to resist). We learned to tell everyone, not just the “important” people. When Leo travels, he travels with a doctor’s note so that he can take food through airport security (a doctor’s note works wonders for making adults realize a condition is serious–make sure you get lots of copies). Leo’s relatives all know about his restricted diet, and when he visits his Dad, Leo goes with one suitcase of clothes and one suitcase of food. I’ve found that buying specialty food was such a horrendous pain at first, that I wouldn’t want to impose that task on anyone else. It also reassured me that Leo wasn’t going to come home with blood sugar crashes and mood-swings.

References:
University of Michigan. Children With Chronic Conditions.

Related posts:

1. Ketotic (“Toddler’s) Hypoglycemia in children
2. Chronic Hypoglycemia Symptoms
3. Reactive Hypoglycemia in Highly Gifted Children

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