Children with Medical Needs

Some of you may have children who are healthy most of the time, and I praise God that you do! Some of you reading this may have children who are ill with a chronic, acute, or life threatening condition–I praise God for you, too, because that means you were given the gift of children! Whether our children are healthy or sick, they are a gift and are precious. I would like to share some of my story of having a child with medical needs.

My 1st grade son has food allergies, asthma, eczema, and environmental allergies. His food allergies affect our family daily: what we eat, what food we buy, where we buy food, where we eat food (no family meals at restaurants), how we eat food, education, friends, how we travel (no planes), and more. We have to be constantly aware that he could have an anaphylactic reaction and we need to know how to identify it, what to do about it, and how fast to act. We have to always epinephrine with us at all times. We have to babysit the epinephrine autoinjectors–ha! It has to be kept at room temperature at all times to be ready to use at a moment’s notice, no matter the outdoor temperature. We have to call food companies for every prepared food we purchase (e.g., cheese, yogurt, milk); if any company has peanuts or tree nuts in their facility, we cannot buy the food because we would risk a reaction. We have to read stories and mourn the children and adults who die from food allergies, and we pray for their families.

Our son also has eczema. It’s much more under control than it was when he was younger. On the day he was born, he had eczema. I thought it was “just” sensitive skin. Nope. It was eczema, and it got worse and worse, cracking his skin and making it bleed on his arms, legs, face. Over time, we learned the foods that tended to make it worse and we avoided them. We stopped buying soaps that made his eczema worse (especially ones that had wheat and milk in them). We stopped using dryer sheets.  Eventually, we got his eczema under control, and it’s only occasionally that it starts to show on his arms or legs. Then using hydrocortizone helps. Praise the Lord.

Our son has asthma. Of all of his medical conditions, this is the hardest. Asthma can get out of control very quickly, and it is scary. It can get out of control in the middle of the night. It takes watching the clocking, monitoring symptoms, and giving budesonide and albuterol sulfate by nebulizer or inhaler at regular intervals. If after enough doses his asthma is not better, then we have to bring him to the ER. We follow our asthma action plan, and it works out. A few years ago, there was a flu going around that caused children, with no history of asthma, to have asthma symptoms and have to be hospitalized. I remember once I had a friend who was explaining what it was like to do the nebulizer treatments and holding her child who could not stop coughing and catch his breath, and how incredibly hard it was. That was the first time I really knew of a friend who suffered like my husband and I did all the time, multiple times per month, trying to help our son breathe. It was the first time I did not feel so alone and I had verification that it was hard, and that my struggle was normal. Of course it was hard–it would be hard for anyone. I think we all appreciate knowing others who go through what we endure. Fortunately, now my son’s asthma is well managed and we have been incredibly blessed to not need to struggle as much.

Our son is also allergic to mold. From about May through November, the mold count is moderate to high outdoors. There are times when his asthma is not well controlled, and if he goes outside, he’ll have asthma attacks shortly after playing. Fortunately, since we started him on a daily inhaler of Flovent, that has not happened in a long time. Really hot, humid days with high molds counts make his asthma worse, but then I know to keep him indoors; it usually doesn’t get like that too often where we live. When we looked for a home, we kept his asthma and mold allergy in mind. We bought a house built in the last 30 years. We looked for one that had no water damage in the basement, and no musty smell. When our furnace died, we bought a new one that has a “super filter” that uses ultraviolet light to kill mold as it filters air.

We have had countless doctor visits to address his asthma, allergies, and eczema. It is hard to find a physician who really listens. It’s hard to learn about the medical field and realize that some of the reason why some physicians are not able to help is because it’s a newer problem: more kids are being diagnosed with the trifecta of asthma, allergies, and eczema than ever before, and more related allergic conditions are being seen.

One condition my son is scheduled to be seen for is for eosinophilic esophagitis. We have an upper endoscopy scheduled where they will take some biopsies to see if he might have it. I won’t go into what that is here…information overload for you! If you could, please offer a pray for our son. I am grateful for the gift of homeschooling. With all of these medical issues, we can adjust our school schedule to be flexible without needing to arrange time off from a public/private school. I don’t need to make sure the physician sends a letter, and then I don’t have to pick up homework for my child to do at home while he’s recovering from surgery. Instead, we go to doctor appointments, and we adjust our school schedule to make it work. Figuring out our son’s health, while he is still developing and growing, is incredibly important. Fortunately with homeschooling, we can be flexible. All three children are “on track” with their school work and our goals for their grades. When we need to take time off for surgery, we can focus on family time.

If anyone can relate to having a child with medical needs, I would love to hear from you. I know the statistics are high that some of you good readers have a child with medical needs. Please know that you are not alone! You are a good, loving parent taking care of your child. God has chosen you to help your precious child learn and grow.



4 thoughts on “Children with Medical Needs

  1. I read your story with great interest and sympathy. I have two sons who both suffer from different chronic ailments. My older son has had 18 operations and needs to have on-going treatment every two or three months. My younger son also suffers from chronic brittle asthma and has no immune system. I can relate totally to your difficulties and anxieties and, also, gratitude for the modern medicine that helps our children lead a reasonably normal life. I have posted two poems about my feelings which you might like to read:

    Liked by 1 person

  2. I don’t have children with medical needs but I am encouraged by your life story. People often ask me how I homeschool my children in various grades, and I truly believe there a lot of people who have to sacrifice a lot harder than myself! Thanks for sharing your story.

    Liked by 1 person

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