June is Migraine and Headache Awareness Month. I did not know that until Wednesday, June 4, 2014. It is fitting that I am now on day two of a migraine. It is fitting that I find this out, two days after we finally found something that works for Lance’s migraines.
I have learned a lot about migraines in the past couple of months. That is when I started researching “childhood migraines.” That was an eye opener because I realized just how much I did not know about migraines myself. It was an eye opener for my sister and mother as well when I posted the childhood symptoms info-graphic on Facebook. The symptoms were one that we had suffered as children, but when you do not know what the symptoms are you do not know what to treat. That is where we were with Lance for a while. We just did not know what was wrong with him.
I felt awful when I realized what it was because if I had been more aware of what the signs were to watch for, I could have gotten him help sooner. Instead, he has spent the past 6 or so months in a misery that I cannot even describe. I have been there, I know what it is like and I cannot even imagine a child his age suffering through it. He has pushed through. As a migraine sufferer, I know you have to learn to push through, but it does not make it any easier. I can only say that I understand.
The biggest misconception with migraines is that it is just a really bad headache. It is to an extent. It feels like that. It feels like the worst headache you have ever had. Except it is not just the worst headache you have ever had, it is more than that. It is a disorder (some refer to as a disease). It is a neurological disorder with no cure. In fact, there is very little known about migraines and how they start that it makes it hard to establish a cure.
It can be different for every sufferer and that is what can make it hard to diagnose and even harder to treat. Many times it goes misdiagnosed for years. It can go under-treated or treated incorrectly due to a misdiagnosis for months or even years. It can become debilitating. It can even become life threatening.
Statistically speaking, migraine sufferers are at an increased risk for stroke or heart attack than the average person.
To do my part to help raise awareness on Childhood Migraines, I will share the info-graphic I found about the topic: “10 Signs Your Child Might Have Migraines.”
These absences were random in nature for the most part which is what made it so hard to find the trend to them. In November, he was diagnosed with mono. It was a real legitimate reason to miss school. He was really sick. His biggest complaint then was that his stomach hurt. He was sick to his stomach along with all the other mono symptoms. Evidently it is not uncommon for the mono to affect some kids in their stomachs and just make the nauseated and cause vomiting. So we treated teh nausea and vomiting. He just did not bounce back from the mono and even though I knew mono takes time to recover from, Lance just did not have the “happy” kid feel to him. The worst part was that it was starting to affect his grades in school.
The nausea and vomiting continued so we returned to the doctor. It was three weeks after the mono diagnosis and he was still throwing up randomly. Upon looking back through his charts for these symptoms, it was discovered that this was a complaint from him all the way back to February of that year. That was as far back as his digital chart went. That was unusual but she thought maybe since he was my reflux kid that he was having problems with that again. It was not unusual for some babies that suffered from reflux to have recurrences as they grow. He had had a rapid growth spurt recently. It was a possibility and maybe the mono had just upset things. This was really the only symptoms he complained of and it was totally random. It was just hard to judge as I would have to keep him home from school 24 hours if he would actually throw up. I will confess to not always doing that if he was fever free and otherwise completely symptom free. If he was close to the 24 hour more I would send him on his way.
Still, his grades continued to plummet and the bullying at school began to increase. The happy and energetic Lance we knew was not the norm. He would come home from school and crash on the couch or in bed. He started complaining about his head hurting some days when he got in the car after school. He was a little more grumpy than usual. He would resist doing his homework more than usual. He was just less tolerant all the way around. It was just little things, but nothing that was over the top enough to give me sure signs that something was completely off.
The first thing that caught me was the bullying. When I figured out what was going on, I tried to put a stop to it. Except, it did not stop. It took multiple trips to the school to talk to teachers and the counselor. I acted immediately when I found out. I knew it was not something that I could wait on because poor little Lance is not as innocent and reserved as he might appear. Lance has spent 4.5 years training in karate and that is enough to give them ample skill to hurt someone. For Lance, he is no longer an under belt and could actually hurt someone. In fact, he was tending to be a bit more aggressive at karate. This is not entirely a bad thing at the dojo, but when the children ranked the same are not as strong as you, it can create problems especially when your true equal is a girl. Unfortunately, they found out the hard way that Lance’s frustrations were turning him into a powerhouse at the dojo. A source of pride to be reckoned with. A new found strength they would have to refine and teach more control. Not a bad thing, just a new thing for them. They were not expecting this from this “young” Lance. Suddenly he was showing them more of what he had instead of the little boy that played around. The dojo was his outlet for his frustrations.
Fortunately, the bullying did start to subside after a couple of trips to the counselor. The counselor was great with him, as were his teachers. They really took care of the problem the best they could considering they had to catch all the children in the act before they could actively do something about it.
After I sat down and watched him at the table doing his homework and realized that there might be more to his putting off and resisting some of his homework than just not wanting to do it. We did the whole eye exam thing and found out that there were some eye issues there. Of course looking back at it now, I am not sure just how much that makes a difference to him at this point. It was at that point that I found out that Lance had been having bad headaches since Christmas – at least. At that point, it had been over 2 months. From that point, it was at least 1 year of random vomiting and nausea that had been reported on his charts at the doctor. This is of course me seeing this looking back after the fact. At the time, I did not see the symptoms or know what they were related to.
After seeing the optometrist, I took him to see an ophthalmologist. I was worried about convergence insufficiency. I am not 100% certain that is what it is, but at least I know it is correctable with bifocals like my condition. The optometrist called it “focal point” focusing issues. It is basically the same thing as convergence issues. Thus my confusion. So I took him to an ophthalmologist to get clarification more or less and to get him “vision therapy” if it was in fact what he had. From what I researched, vision therapy was more effective than just bifocals alone and all I have ever had is bifocals. I was not thrilled about having my 9 year old dependent upon bifocals. So yes, I was looking for a more specialized opinion. Unfortunately, that is not what I got. Instead, this ophthalmologist had a 30 year background in psychology and decided that Lance was having other issues that were causing his problems. He was diagnosed with “hysterical blindness” and “conversion disorder.” I was told that basically once we took care of his bullying issues all of this would go away.
Now, I am a well educated person and I am a killer researcher. I also know that you do not need to have a medical degree to understand what a diagnosis means. So there. I sat there and listened to this ophthalmologist tell me “the best thing for him was to let him beat up his bullies.” The entire time I am thinking that the school is not going to let this fly in any way, shape, or form no matter what the doctor thinks is in the best interest of Lance. I am not nuts! I understand that Lance might be able to beat up his bully and it might be the best option here, but it is not going to help if he gets suspended for fighting. Sorry! Anyway, I go home and I research these different diagnosis and the other things that he told me about what were going on. He did have visual problems, but he did not see them to be what Lance said they were. He thought they were more of a psychological problem with everything else going on. Who am I to judge? He has got 30+ years experience in this.
Still something did not sit right.
I had recently had a horrible migraine where I had to remove my glasses for several hours. I never take my glasses off except to sleep so very rarely am I without my glasses. Well, I experienced these visual disturbances that Lance described. I did not understand what he was describing until that day. It was the oval white spots that literally made it look like you could not see anything where they were. It was completely odd. It happened more than once with this headache when I put my glasses on and off. The headache was that bad. I would rub my eyes and I had to give it a few minutes to let it go away. It did go away, but it did take a few minutes.
So like I said, something did not sit right with me. I knew there was more to Lance’s symptoms than just something in his head. We “had” taken care of his bullies for the most part already. Yes, he said there were still issues when we were at the ophthalmologist’s office, but the worst of it we had already taken care of it. Maybe it was triggering more stress for him, but it was not the root of it. We dealt with these bullying issues. Things got better there, except the symptoms did not go away. Only the visual ones. His grades still were not improving any. He was still not any happier.
And then the nausea and vomiting started to get worse…
And then every single day after school he would get in the car complaining about his head hurting.
And then it really became a problem because looking back, I did not realize just how much he was missing out on. He missed 4-6 weeks of karate. He missed a month of Cub Scouts. He just did not go. He did not feel like it. He would come home from school and go crawl into bed after he did his homework. I would at least get his homework out of him as he pushed through that pain after I gave him either Tylenol or Advil to hopefully numb it. It never did.
Finally, on May 2, 2014, I took him to a pediatric neurologist.
He was diagnosed with genetic migraines.
He is 9.5 years old.
The neurologist adjusted the medication that we were already trying that the regular doctor had put him on. The higher dose did not work. We were even above what the maximum dose should have been and it did not work.
The last week of school, the neurologist switched him to a low dose of topirimate and after 1 dose he was slowly coming back to that happy Lance again. He was running around at Cub Scouts. He made it to karate 2 times that week.
After his first dose, the next day after school he complained about his head hurting again. I asked him to rate his head pain on a scale of 1 to 5 with 5 being the worst. I had never really had him do that before. I know I probably should have, but it never really crossed my mind. He said his head hurt about a 3. A three? I asked him what it was the day before when we went to the neurologist. “A 100!” Holy cow! I can take a 3 if that is the difference. I can handle a 3 over a 100 any day. I can treat a 3.
The best part is that now when we treat his headaches, they do respond to the standard dose of Tylenol or Advil. We treat and we move on.
It is night and day difference. He is not 100% headache free yet, but he is headache – less. Less is better than where we were. I can handle less.
I share this with you so that you will understand that even your young children can suffer without you realizing that this is what their problem is. I did not know. I did not understand just how bad the pain was for my little boy.
I am a migraine sufferer and I did not know.
Migraines are no fun.
Migraines do run in families.
Know the symptoms and be aware.
I am a migraine sufferer. My oldest son is a migraine sufferer. My youngest son is a migraine sufferer. All of my siblings. My mother. My maternal grandmother. It runs in families. Genetic migraines are real. Please be aware and please do not suffer needlessly. There is help out there and if you find the right doctor, you can find the right help.
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