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- Thu Jan 29, 2009 10:49 am
Hi, my daughter has had recurrent and severe headaches for the last two years. She is now 6, and has been under the care of a neurologist for the last year or so. She takes 5ml of Pamelor (nortriptyline) every night to control the pain.
We had blood work run twice on her, at my request. Her platelets have come back moderately high both times. The neuro tells me the range for pediatric platelet count ends at 350 and hers is 453.
My problem is that I am concerned about her, while everyone else tells me it's nothing to worry about. I feel like I am missing something huge here, and it nags at me all night and all day. She says the headaches are constant, but flare greatly after increased activity, such as P.E. or recess. She will literally be playing and then be down for a couple of hours with pain. She is also vastly below the normal range for her weight, and has been in the 15th percentile for the last few years, but she eats like a horse. MRI and CAT scan of the head came back normal, with only mild scarring presumably from the headaches. She is also perfectly healthy otherwise; there has been no symptom of an infection since last July when she was stricken with a stomach flu.
Thoughts? I am severely frustrated, but due to our insurance I can not obtain a second opinion without significant cost. Thank you!
| John Kenyon, CNA
- Mon Mar 02, 2009 9:33 pm
It seems as though the headaches are a bodily response to something (as opposed to a structural abnormality like a growth, or marked change in blood pressure or intracranial pressure). This could be a variation on the histamine (cluster) headache theme, and since those are rare in people as young as your daughter they may manifest differently. One reason I suspect some sort of rebound headache is because of the way it flares after play. However, even mild scarring in the brain or its lining leave me wondering if this might not be an autoimmune problem. These are fairly unusual in such young patients, so it's more difficult to quantify. If all the benchamarks have been met clinically through testing, there is little choice but to watch and wait for a change. This is far from ideal, but since there is no clear cut syndrome recognizable, this may be the only way to discover the underlying cause.
The platelet count should be monitored, since that is also unusual in a patient this age, and thromboythemia is almost never seen before adulthood. Something is going on, but it's difficult, so far, to pin it down. It has to be very uncomfortable to know something is not right but be unable to go right to it and correct it.
If the Pamelor is effective this suggests also an inflammatory (autoimmune) problem. The good news, if it works, is that it does.
I wish I could give you a better answer, but like your doctors, I find myself in a blind alley for now. The best case scenario would be for the problem to simply resolve, which is also a possibility. Good luck to you and your daughter and please follow up with us if anything changes or there is anything further to add.