I have a 14-year old son who has severe migraines. He has had them since he was 8 or 9. His doctor has used various terms in relationship to his headaches: status migraine, intractible migraine, chronic daily headache ...
His headaches typically last 5 days or longer (he had one headache that lasted over 6 months 3 years ago) and are at levels from 6 - 9 for the last few months. We rarely see even a couple of hours of the headache going lower. Anytime the headache is above a 4 or 5, he loses his vision. He cannot read, see faces clearly, or even read fairly large signs. In addition, he gets both sound and light sensitive and any change of level (up or down) causes even more severe pain. When the headache finally breaks, we will get from 1/2 day to 2 days break before he gets a new headache. Between the intense headaches and the loss of vision during the headaches (which once it occurs does not go away until the headache is back down to a 2 or so), it is almost impossible to get him to attend school or complete schoolwork. When his headaches are bad (7 or more), he often ends up staying awake all night because of the pain even with the headache even after taking Tylenol with Codeine. Then when he finally gets tired enough, he crashes and is almost impossible to wake for 8 - 12 hours.
We have seen many doctors about this (two pediatric neurologists at Kaiser, two-pediatric neurologists outside of Kaiser, several pediatricians, and a chiropractor). We are now seeing a doctor at the only headache clinic in our area that will treat pediatric patients that I am aware of. He is very kind and keeps working with us to try new things.
We have tried many preventatives and drugs to stop the headaches, including herbal remedies like ferverfew and the suggested vitamins, etc. Nothing seems to be affective at preventing the headaches nor stopping them once we start. If we give him a shot of Torridol, it stops the headache for 4 - 6 hours but then it returns, sometimes worse than before. Tylenol with Codeine helps some of the time, but not consistently. We have tried treating him with steroids (not prednisone, but similar). Although the steroids don't appear to help while he is taking them, once the course of steroids is complete, we can get a shot of Torridol. Then the headache will be gone and stay gone. However the last time, he had another headache after 1.5 days.
The school is hounding us because he is not getting an education. We tried sending him to school with a headache and they kept him for a couple of hours and sent him home because he was, of course, non-functional. They don't understand/believe that this is how he is almost all of the time. I hate to have him miss so much school and education. I also hate to make him suffer more than he has to when he cannot learn in this condition anyway. He misses most school and fun activities. He loves being in musical theater. But his headaches have made him drop out of two plays. He is not well enough to participate again at this point in his life. He rarely gets to participate in fun things since in a 3 week period, we are lucky if we have 3 good days.
Both the doctor and I feel at least some of the headaches are stress-related. But that does not seem to account for all of them. We have not been able to identify his triggers. They may be weather or seasonally related. But, I am not sure. We have him in counseling to hopefully help him learn to deal with stress more successfully.
This is tearing me up because I don't know what to do for him or how to help him medically, educationally, emotionally, ... He now has the feeling that nothing will ever help make him better unless he gets lucky and grows out of it. I have so many questions.
How do I help him not give up?
Is he getting the right medical treatment? He has "status migraines", but no doctor has ever treated them aggressively the way everything I have read says they should be treated. He is also a pediatric patient. Does that meant they should treat it less aggressively and that it isn't as dangerous for him?
What do I do about his education? Do I push him? Do I just accept that we do what we can and worry about making it up later? If so, how do I convince the schools that this is the right course?
How do I figure out how much of this is psychological and how much physical? And then what do I do?
He doesn't take responsibility for his own well-being. He won't take meds unless I remind him. If he is hurting real badly at night or when I am at work, he will not get up and take the pain meds unless I tell him to and then somtimes he resists it. How do I get hime and/or help him take responsibility for the parts he can control?
I am a working, single mom. I feel guilty when I leave him alone with his headaches. (Every one in my family works too.) I keep in close touch with him via im and phone during the day. The school has questioned the safety of this situation. But, I have to keep working to keep a roof over our heads, food on the table and very importantly, the medical insurance that allows him to get decent medical treatment.
I can't be the only parent who has a child in a situation like this. I am hoping to hear from other parents dealing with these issues and how they are coping with them.
Thanks for listening,