Posted by Dave Emond (188.8.131.52) on August 28, 2001 at 15:35:56:
In Reply to: Sons headaches posted by Sharon Bell on August 28, 2001 at 10:44:23:
I can't help but think a situation such as Sharon has described should not draw our fullest attention.
What we read from the description and solutions does not on the surface sound like CH. Could it be that this is only because we have become educated in our own CH langauge? What I mean, is the thought of a child trying to describe any type of headache at such an early age of 4 years old would be almost impossible. From age 4 to 10 without a diagnosis, this child would have to percieve and adapt to his condition without the aid of life experience. Adult CH sufferers have a hard enough time describing the pain as it is. Most, as we've seen here on the board, had no way of describing CH until they came here and read other descriptions, then were able to say, " Yeah, that is exactly what I feel!". It's easy for us to grasp the concepts of terms such as shadows, Kip scale, ice pick, Beast, etc.
How would a 4 year old even begin to describe the pain they are feeling with nothing to measure it against? Think how easy it would be at such a tender age to have a sudden pain it their head, the parents unsure what to do. The child may be given Spite or crackers during this time, and should the pain go away for whatever reason, wouldn't we expect the child to percieve in his mind that these are what helped him? Could the nap be after a bout of pain be from pure exhaustion of dealing with that pain? Surely a child is going to create their own associations with pain and relief outside of what we as adults would. Again, I remind myself of my years of dealing with CH before I even knew what CH was. How many of us as adults tried numerous ways of coping or dealing with the pain. How did we try to describe it to others? We were not very good at it as adults or even teenagers. How often did we find what we thought was relief, only to find out it wasn't lasting relief?
I truly suspect that Sharon's son does have a serious condition that he has never had the tools or education to properly describe it. With what appeared to be effective at the age of 4 and growing and living with this condition, I can't believe he could possibly relate what is actually occuring, he has built his own coping methods and ideas to survive at way to young of an age.
I'm not about to say he has CH, we have no way of telling. But, I believe we can, and should, do everything in our power to find out. This can not be done overnight, our CH test here I believe cannot say yes or no this is or isn't CH.
The child has in his mind preceptions of his own making, these would transfer to the parents and even doctors. We have more knowledge about CH right here than the child, the parents and even the doctors. We cannot send them off with good hopes, it should be our duty to help in anyway we can. Hopefully, with the greatest use of caution, we can find out first if it is or isn't CH. But, that is not the end, if not CH, I believe we can help find out just what it is.
Sharon: I will e-mail you back soon, with some tools to work with. A daily calendar should be started if you have not already one in place. We can help you with a format. Over time, this should show significant clues that all of us together (your son, yourself, teachers, doctors, CH.com family and OUCH) to properly diagnos and treat whatever his condition turns out to be.
I'll pledge myself now to helping Sharon and her son find out just what his disorder is, no matter how long it takes. Anyone else who is willing to do the same, please e-mail Sharon and myself.
I think it would be a tradgedy for us let this situation fade out of our hearts, minds and education. Think about it, a child in pain from 4 years old to now 13, without the help he so desperately needs.
I will contact you soon Sharon, and get we'll get started on finding relief for you and your son. God Bless,
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