Learning your child has an invisible illness can be worrisome, to say the least.
The day my 10-year-old son was diagnosed with abdominal migraine
, I immediately knew we were facing an uphill battle. I wanted nothing more than to help him get the best medical care possible and would do so by becoming his health advocate.
I was aware what the migraine
disease could do to a person.
I was diagnosed with episodic acute migraine
at the age of 10 and spent most of my teen years into early adulthood struggling with my neurological disorder. Then shortly after turning 35, I developed vertigo associated migraine
that were chronic
(migraines or headaches 15 or more days a month.
) The debilitating nature of my symptoms, like dizziness and decreased motor skills, led to the 18-month suspension of my driving privileges.
Even with three decades of living as a person living with migraine under my belt, my son's health situation turned out to be much more complicated to treat than any of us anticipated.
With the help of our primary physician, we found a neurologist that implemented a treatment plan entirely focused on the symptoms causing the most strain to my child's frail body.
It was a daily struggle to keep his crippling stomach cramps, agonizing head pain, persistent vomiting, sensitivity to touch, light, sound, and smell at levels that were tolerable for him. Some days the pain would become too overwhelming for my migraine warrior. He'd lose his appetite and desire to drink anything. When those days occur, it was necessary for us to make the hour trip to the Hospital where the Emergency Room never questioned the actual nature of my son's health and stuck to his medical protocol: a migraine cocktail consisting of three injected medications and fluids to get re-hydrated.
Yes, there are several treatment options available for children with migraine, but it could take anywhere from weeks to months or even years to see promising results. When you do find something that helps lessen or eliminate your young migraineurs pain and problematic symptoms, there is always the possibility of them becoming immune to their treatment regimen, and you are back to square one.
In my child's case, it took eight frustrating months of going through two neurologists, a combination of 16 types of medications in various dosages, changing his sleeping patterns a total of 5 times, and eliminating certain foods, just to be able to return as a part-time student the following school year.
Our family and the school's staff became the backbone of his support system. The goal was to help my child with both abdominal and chronic migraine with aura, to continue his education and get the chance to be around his classmates as often as possible. Of course, that would come with its set of challenges.
The second someone discovers that my kid has "migraine," they inadvertently state what I should or shouldn't be doing to help him. What's worse, is how they take it a step further by directing their uneducated thoughts onto my son. Most of their remarks are highly insensitive and force me to intervene. As much as I'd love to tear them a new one for upsetting my now 13-year-old, I take a more positive approach.
I use the same advocating methods I've taken twice to my State's Congressional Members on Capitol Hill and enforce those tactics to dismiss whatever migraine myths they believe to be true.
Sometimes I'll have that breakthrough moment in a conversation. I'm able to change the perspective of the person that believes a migraine are just headaches that an over the counter pill would cure. However, there are still a handful of hardheaded individuals refusing to hear me out.
Our family has enough to deal with on a daily basis, without having people constantly questioning the severity of kid's health. People need to understand how their words can negatively impact an already vulnerable adolescent. That's exactly why I felt it was necessary to list the following four things people should stop telling a child or teen living with chronic migraine.
• There are kids worse off than you - Telling my son something he is already aware of, is unfair and in my opinion, unethically wrong.
As it is, most teens struggle to fit in socially with their peers. The last thing they need is additional pressures to justify their worth in today's society. All you're doing is creating the notion that he might be an unnecessary burden on those who take care of him. Plus, it doesn't change the fact at the end of the day; my son still has *the 3rd most prevalent and 6th most disabling disease in the world.
A person's health issues should never escalate into a competition against what another is experiencing. Any person living with chronic pain or illness deserves the chance to live a better quality of life.
• You must be making yourself sick - I lost count of the number of times I have heard this line spoken to my child. Frankly, it’s an insult against my son's health and irritates me to no end!
However, as another way to rule out that remote possibility and put all assumptions to rest, my teen spent several hours within a two-week period with a neuropsychologist for a thorough evaluation.
requested a form to be filled out by my son's teachers, his neurologist, and myself; the people who know him at his best and worst, as one portion of his assessment. The questions were related to how we felt my kid's health affected him socially, emotionally and intellectually.
It was mandatory for my husband, and I to both be present on day one to answer some personal questions relating to our life on the home front. Once we completed our part, the neuropsychologist asked that we stay in the waiting area while she asked our migraineur a series of questions that tested his emotional and mental stability. There were also a few tasks involving building some small models that would test his motor skills.
A few weeks later we met the neurologist to get the results and discovered nothing was psychologically disturbing my teen to provoke his migraine attack frequency. Searching for the underlying root to any chronic medical condition means keeping an open mind. I saw these results as one more way to cross something off our long list of things we attempted to help my son.
• You’re not drinking enough water - This must be the most common statement anyone with health issues hears. I can tell you out of all the people with migraine I know, and I know hundreds, we all understand the importance of staying hydrated. However, if you are already in the middle of a migraine attack, drinking water isn’t going to be of much help. If anything, it’ll cause you to be nauseous, and that is the very last thing any person feeling like their head is in the dryer on tumble dry, wants.
My son either takes a bottle of water or his water bottle to refill in between classes to keep hydrated throughout the day. When he comes home he'll continue to drink water. In matter of fact, he does a much better job at drinking H2O than I do.
Again, migraines are a genetic neurological disease. Consuming water will not stop someone from having the condition.
• You miss a lot of school. You must hate going – For starters, this is the only one of my three kids that love going to school. Since he was in Pre-K, I never had any issues with him not wanting to be in class. Reading his is all time favorite past time. He always went above and beyond for his class’s required reading assignments.
Every morning, he tries his best to get to class on time, but his body sometimes has other ulterior motives.
Because of how disabling my son's migraine attacks can be at times, the school established that he was qualified for an IEP (Individualized Education Program.
) What this translate to, the teaching staff will find alternative means to accommodate my son's educational needs based on how he feels before, during and after each migraine attack.
For the past four school years, it has been a minute-by-minute process to get my child out of the door and onto the bus in time.
Our mornings start at 4 A.M. Why so early? We've established this as the time frame his migraine attacks seem to hit him the most, and if we are successful, the medication or use of alternative treatment methods (such as icing his head and a few puffs of canned oxygen) will get my middle schooler to school for a full day of classes.
Within 30 minutes, if his symptoms or pain levels are resistant to our first efforts, I will administer additional medication per how my migraineur rates his pain and symptoms.
6:15 A.M is the set time for us to determine whether my son will be on the bus for 6:40. If it appears unlikely, then I place a call from the school letting them know we are in the process of trying to get that morning's migraine attack under control.
7:30 A.M rolls around, and I'll attempt to wake up my son hoping he can get dressed; if he hasn't already at that point. He often has decreased motor skills, which is an unfortunate migraine symptom and can turn into a clumsy 5'6 walking catastrophe. When he's experiencing head pain, just bending down to put on his shoes can send him into a massive world of hurt. That's when I step in to help.
Usually, between 9 and 10 A.M, we've managed to get my son into the vehicle for the 20-minute drive to school. Next is the part where either my husband or I cautiously make our way through several little towns, hoping our kid doesn't get sick to his stomach causing us to pull over and wait things out for an undetermined amount of time. 50% of the time we'll make it to the parking lot of the school. The other 50%, we end up turning back around and heading home due to our kid's symptoms worsening.
The goal is to reach the school any time before 11 A.M. With all the measures; we've taken, if my son's health fails to cooperate, he'll resort to his bedroom to wait out his latest migraine attack which could, unfortunately, last anywhere from 4 to 72 hours.
If my son didn't want to attend his classes, he wouldn't try as hard as he does every morning to get there on time or do half days.
One of the most frustrating parts of the migraine disease is no matter how equipped you are with your treatment options; your body will ultimately decide whether you can function regularly or end up secluded from the outside world for days on end.
You don't need an instruction manual to talk to a child or teen with migraine. Instead of coming off as hypercritical, think about putting a positive spin on your words like acknowledging when they do something despite the many challenges of living with the migraine disease. It's so much better helping put a smile on someone face than giving them another reason to feel helpless about living with a headache disorder there is currently no known cure for.
***References: Migraine Research Foundation, American Migraine Foundation, Web MD, American Headache Society, Vestibular.org, pediatricneuropsychology.com, and understood.org