Hello everyone i need help trying to explain CH to my 10 year old daughter do you know of any child friendly info or sites on the net with info that a 10 year old can digest and understand without giving me that look that she pretends to understand but is just baffled buy all the big words.

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Oliver

My granddaughter is three, she thinks the 02 bottle with the bubbler is a drinking fountian of some sort. She came up with that on her own.Last night she asked if I had a belly ache when I was huffin on the 02. I really dont know what to tell her other than," papa's ok I'm getting a drink of water". She still knows something is wrong. She started rubbing my leg and saying, "papa's ok" to her mom. This sure did frustrate me. I think she just needs to know everything is going to be alright. Give them the information they can handle. They will do the rest. ;) At ten I would think they could grasp more but still need to know everything will be alright.
all the best
the bb

Well, I have quite a few little cousins, 1-6 in age. So far the 3-4 year old and 5 year old have asked...

Basically, they noticed that my eye is swollen shut, and ask what's wrong with it during an attack. So I tell them that I have a headache and it sometimes makes my eye close up, and not to worry because I'll be better in a little while.

I know headache doesn't cover what we have, but it's the easiest thing for them to understand, I think. Since she's older you could always say a part in your brain doesn't want to cooperate right for a little while, so it gives you very bad head pain. If you need to be left alone you might explain that it's easier if Daddy has quiet time during this to deal with it.

Really, they do just want to know that you're going to be alright I think. I made sure to show the two that asked, after my cluster was gone that I was fine again.

I have three kids; 9, 11 and 2 years old. I just told the two oldest that I have a special headache that is really painfull and that they should stay away when I tell them, but that it will pass in an hour or so. The youngest just says daddy auau when she sees that I am having an attack so she got it too:-) Kids are smarter than we think so I don't see any reason to elaborate.

My little grandson has been around me since he was a baby. His Papaw explained to him one day (while I was sucking O2) that Granny has these "bad" headaches and we don't touch her when she has one or while she's on the O2. When she's over it she'll need lots of hugs to make her better. That he understood.

AFter that, he'd see me pulling on my ear (I get cramps in my ear when I'm getting hit) and he'd run to the O2 tank and start yelling, "Breathe Granny Breathe!" He's almost 7 now and it's gotten to be a "game" with us. He "guards" me while I'm on the O2 and talks to the dogs (telling them that Granny will be ok in a little while, but don't touch her right now).

We went thru the "Granny I have a headache and I need oxygen!" thing and I finally told him he was a hypochondriac, so now he just tells me his hypochondria is bad and he needs O2. He huffs a little and gets lots better. Amazing! :)

But don't "hide" this from kids. They really are great supporters and the hugs after the hits are the best medicine I've found.

Hugs BD

I find it is real important to listen to the question they ask.  Answer it as directly and succinctly as possible.  If that answer isn't good enough, they'll rephrase it on their own.  Sometimes it takes a while for the answer to sink in.  If they're still not satisfied they'll be back.  They know where you keep your O2 ;D

I try hard not to give them any more than they ask for.  It keeps their heads from tilting sideways with that look the dog gets sometimes.  Too much info is only likely to scare them.

My 9 y/o asked if my father had them.  The answer was yes.  Being a smart little boy the next day his question was: can I get them?  The answer was maybe but it's not likely.  He knows percentages so I told him that only 17% of people directly related to someone that has CH will get it themselves.  That answered his question and reassured him at the same time.

Like other's have said, all they really want to know is "are you going to be ok" and "is there anything I can do".  We don't really know why we get them in the first place so how can we explain it to someone else?

-Dennis-