We, as special needs parents, spend a lot of time fighting off illness. It’s difficult to explain to friends and family members what’s necessary to keep our kids well, and what they can do to help. I’ve listed a few common reasons special needs kids just can’t afford illness, as well as what friends and family can do to help in each case.
- Immune deficiency – This comes in a lot of different varieties and the specifics of each aren’t as important. The main thing you need to know is, every immune deficiency is different and each responds (or doesn’t respond) in different ways. There are two key points which are important to understand. First, the child may or may not have more difficulty than normal fighting off the illness. This can mean anything from prolonged illness to hospitalization. Neither of which is something you want to put the child through. Second, the child’s immune system may not have a memory. What does this mean? It means that if they get a cold and recover, they can catch the same cold and they’ll have no better ability to fight off the cold than when they caught it the first time. They don’t build immunity. Everything is new every time they’re exposed.
How do I help? Children with immune deficiency need to be kept out of any environment where someone is ill. Parents take great pains to make sure their child’s environment is as virus and bacteria free as possible. If you believe you’ve been exposed to something serious like flu which would put a healthy person on the couch for days, it’s critical to wait the length of the incubation period to make sure you’re not going to catch the illness. Never come to visit the child while sick, and wait 2-3 days after being sick before visiting. It’s possible to transfer an illness to an immune compromised child over a larger window of time. - Failure to Thrive – The main gist of this problem is that the child can’t afford to vomit or eat less than they already do. In the majority of cases, kids lose weight when they get sick. That’s just an un-avoidable fact. Depending on their nutrition status, Failure to Thrive kids may or may not be more susceptible to illness. You don’t want them to get sick, but once they have gotten sick, if they have an otherwise healthy immune system, they don’t suffer as badly if they catch the same illness again.
How do I help? Parents take great pains to make sure their child’s environment is as virus and bacteria free as possible. If you believe you’ve been exposed to something serious like flu which would put a healthy person on the couch for days, it’s critical to wait the length of the incubation period to make sure you’re not going to catch the illness. Never come to visit the child while sick. - Aspiration – This can be an invisible health issue, in that there may not be any outward sign that aspiration is occurring. When left untreated, pneumonia tends to occur eventually, but not always. Food particles get into the lungs, and it causes damage to the lungs over time. Some children only aspirate on thin liquids. Others aspirate everything, including solid food. They can also fall anywhere between, so the treatment varies immensely. Sometimes a Nissen fundoplication is performed. This procedure varies immensely also, but sometimes results in a child being unable to vomit. This may or may not be an intentional result of the procedure.
How do I help? Parents take great pains to make sure their child’s environment is as virus and bacteria free as possible. If you believe you’ve been exposed to something serious like flu which would put a healthy person on the couch for days, it’s critical to wait the length of the incubation period to make sure you’re not going to catch the illness. Never come to visit the child while sick. It’s sometimes extremely painful, or impossible, for someone with a Nissen fundoplication to vomit. If you have an illness which causes nausea or vomiting and the child you’re visiting has a nissen fundoplication, I would recommend waiting an additional 2-3 days after it has resolved before visiting the child. - Premature Birth – These children are born between 37 weeks gestation and sometimes have long-lasting health issues as a result.
How can I help? Ask the parents what they’re comfortable with, and follow their guidance. No one that’s sick, or has recently been sick, needs to be anywhere near a NICU. Once the child is released home and no longer requires monitoring, the parents are the best judge of whether or not the child can afford to be ill. Also, please be sensitive to the fact that having a child in the NICU is traumatizing. It may take months or years for the parents to recover from the experience. If they’re being what you would consider, “over-protective,” please be as understanding as possible.
In general, it’s important to follow the guidelines the parent has set for whether or not their child can be exposed to illness. I’m a big believer in allowing children to build immunity to illness. In general, it does offer a lot of benefits to simply let the child get sick and strengthen their immune system. Unfortunately, for many special needs children, this provides more harm than reward.
I hope this information is helpful. If you have any comments or suggestions I would love to hear them.