EYES WIDE OPEN - CHILDREN WITH MIGRAINE
At U.S. Headache Association, we walk an important fine line. On the one hand, we are headache patients, and this organizations represents the community of headache patients, with all the reasons to commiserate that that involves. However, we are keenly aware that overemphasis on commiseration for the individual patient can give the condition, which may already have a substantial influence over their lives, even greater power. Most patients seek to minimize the influence that their headaches have over their lives, not increase it. However, we have an important obligation to help inform our community, some of whom do not even realize that they are one of us. As we discussed this subject, we realized that the various issues seemed to be almost limitless. It is bad enough to have a condition that may be limiting at times, but it is far worse when you don't know what you are dealing with, or you don't know how to think through an issue. So, we are going to share some important pointers in what we think will be a series of articles, called Eyes Wide Open. As we have alluded to, what we mean by "Eyes Wide Open" is that, while not surrendering to this sometimes debilitating condition, you will at least be in a position to address whatever it is with which you are contending, armed with the knowledge and information you need to make wise decisions.
So, today, in this "Eyes Wide Open" article, we are going to address Children with Migraine. Many people believe that Migraine is something that only adults get or something that people get when they reach adolescent years. It is not clear to us what the true onset frequency is in children, but we have reason to believe that it is higher than people realize. In one of our community families, 2 of the children had migraine begin at the age of 6 years old, 2 siblings. The frequency of their headaches was high, and one of their parent's had chronic migraine, so it was fairly obvious to this well-informed family, that these children were contending with migraine. However, if they did not have a diagnosed parent and/or their frequency was not as high, their migraine symptoms may well have been masked among any number of other common childhood illness possibilities, causing them to be misdiagnosed. So, if a child is having headache, nausea and possibly vomiting, it is possible that they are having migraine. The parents need to think long and hard as to whether either of them experienced similar patterns of illness in their childhood, adolescent years or even if they know they have migraine or had migraine as an adult, because it is inherited. The reason we mention this in this way is because there are so many un-diagnosed and misdiagnosed migraineurs, and because some people do "outgrow" migraine. So, they may not get them now, but they may have had them in the past, and may not have known that what they had was migraine. We hope you are beginning to appreciate why we felt the "Eyes Wide Open" series is so important. We are on the first paragraph of our first subject, and you can already see how complicated these issues can be.
Now that we have covered the most important point, we will run down a list of things to keep in mind with children with migraine. This could be a book, so we will try to be brief.
1. Pain can creep up on people, including children, so headache pain that may be coming on may not be registering in their minds. This can be especially true if their condition starts as a low level pain and does not worsen. So, they may never complain, and may adapt to this as their new normal and not report themselves to you as not feeling well. Watch for mood changes, as a sign of pain.
2. Migraine is a cause of disability. You don't want your child to feel "disabled" or to embrace disability as a way of life, but there may be some accommodations needed for school attendance or homework. That is available to you.
3. Many doctors do not like treating migraine patients, and many are not highly informed about migraine, so you need to ask around to see who would be a good fit. Ask your current pediatrician how they feel about working with children with migraine. Even if you get referred to a Neurologist, they may not like working with migraine patients either, so don't assume that just because you got referred to a reputable Neurologist at a Children's Hospital that your pediatric patient will get the attention that they need. They may not. They are overwhelmed with other serious neurological patients, and migraine is not viewed as as high of a priority. They will bump you back to your pediatrician as soon as possible.
4. Sports, School Activities, Career Aspirations, etc. Migraine, especially Chronic Migraine, has a pervasive impact across all aspects of a patient's life. It may start to influence your child's decisions even before it registers in their minds that that is what is happening. Imagine how much fun practicing football or practicing marching band in August is to a chronic migraine patient versus their non-migraine counterpart. The child should aspire to anything they want to do. But, one additional lens that they will naturally filter life choices through is the lens of being a chronic migraineur, whether they do that consciously or subconsciously. In our view, it is important to bring those filters top of mind and consciously and conscientiously make rational, well-reasoned life decisions evaluating the decision within the context of the reality of chronic migraine, looking through a clear lens, and considering all alternatives.