My 7 year old son, Christopher (aka Chucklehead/Critter/Aqualung) has been having bouts with headaches, several times a day, at school and home. CH are rare, so my first instinct was to make sure he's drinking enough water. When I'm in remission (which I am now for a couple years) I usually do get "normal headaches." You know, the kind that makes you just want to find a dark, cool room and sleep, while slamming Motrin. I thought he was going through this. Well, more water wasn't doing the trick. Within a week or two, the school nurse was calling, and the teacher was griping. He hasn't spent a full day in school in almost a week.

Lately, we've observed him grabbing his head and sometimes eye and screaming out. We observe these episodes lasting 2 hours or more. Needless to say my heart was breaking. Then one night, he looked up at the wife with a half crap-eating grin, then resumed thrashing about. Show-over! We had his heels locked at attention and the interrogation began. >:( With a few carefully targeted questions, we discovered that he does have these episodes, but ends up milking it a little longer than the pain does last. After a few threats describing an empty bedroom after school each day, the promise of no more deception was made. But the episodes resumed the next day. A little milder than before, but we could tell they were painful. Finally, he got in to see a Pediatrician today, with a referral to the Neurologist Monday.

When I got home today, I observed him head-banging pretty bad. Mom was at her Witt's end. I tend to be a bit more sympathetic since I can relate all too well with this. His episode lasted at least 2 hours. It seemed to subside (I can tell) but when I suggested it was doing better, the thrashing began again. The wife was coming unglued, but I held out, knowing that when it starts to subside, it will come again strong several more times before it goes completely away, at least with me. But he had that half-baked grin again. Finally I announced in a loud voice, "It's gone now, Christopher!" Then he went to playing with the puppy. Very interesting.

I know he's having episodes of something. He's also milking out the length. This is frustrating.

My question for you all is, Have any of you with children suffering had these doubts? Have your kids "milked it out" before? Can this be a case of a child not able to detect a difference in pain levels?

While I'm here, I'll let you know that the pediatrician thinks this is CH.  I'm a bit confused, because some symptoms aren't consistent with CH. Here's what happens:

His peak of pain is usually described as being centered on the forehead.

Very rarely does he suggest it to be around any of his eyes.

It's accompanied by a slight pain in the neck, but centered on the back.

It will usually travel from one side of his forehead, to the other side as well.

No change in the pupils. He has brown eyes, but I can still see enough pupil to tell.

He is getting dark rings under the eyes because his sleep is being disturbed. But no drooping.

He says neither nostril is stopping up, or running.

I haven't observed any tearing or red eye, but the wife noticed it for the first time today before his afternoon attack.

So, I ask further:

Is it possible for the early stages of CH in children be different than adults?

If this is a case of CH, will the symptoms "mature" over time into more "classic" CH symptoms?

Did any of you other parents experience a child not being able to explain locations of their pain accurately?

Most of you probably think I'm a monster for trying to admonish my 7 year old in a time of distress, but We've caught him toying with us before, and I need to know EXACTLY what's going on. Is this familiar to anyone else, and how did you handle it?

Thanks and remember  I appreciate it all.

Hello - I'm sorry you had to ask this.

My son does have CH, he's had an mri and been diagnosed by Professor Goadsby who is one of the leading neuro's for kids with CH.

He has ALL of the usual symptoms especially the droopy eye, in fact, that will start for up to two weeks before his cycle does which is a great wanring (although I do NOT depend on it!)

From what you have said, and please remember I'm no doctor, it doesn't sound like cluster headaches. That isn't any reason to sit back and do nothing though as pain of this intensity in a child MUST ALWAYS be investigated.

You need to get him and appointment with a HA specialist peadiatric neuro as soon as possible. There are over 600 types of headaches alone to rule out never mind anything else. I would imagine he will need  at least an MRI as well.

Please please please, no matter what it turns out to be - let us know okay? Too many times people come and ask for help but never come back when it isn't CH. We're left wondering how these families got on. There are people I talked to 3 and 4 years ago that I never heard from again and would love to know how they did. Please let us know how your little boy got on. It's especially close to home for me this time as my little boy is seven too..

Thank you and take care
Helen

By the way - when questioning kids NEVER ask leading questions or give them a hint as to answers! LOL I've learned that one the hard way! (Not with CH though, Jasper was too young then)

Ask THEM to describe the pain, don't ask "does it feel like"

Ask them where it is don't say "Is it in your eye" for instance

Don't say "does your nose get blocked up" ask "Does anywhere else on your body feel funny What about your arm? What about your tummy? What about your head?" and so on

I hope that helps!

Great advice. Thank you.
He has an appointment Monay with a Neurologist.
He's also told us about some things at school and is in some trouble. We know for sure he is experiencing something. However, he's admitted to us that it's not as often or severe as he's let on. I've found a way to gage his pain more accurately and I've been doing it for a day now. The times and durration of the episodes are more in-line with CH at times, but other times not. Will keep you posted.

Thanks again.

You're welcome and good luck! I sincerely hope it isn't CH - I know from my own experience there isn't a med available that's safe for kids so young with the exception of Oxygen. I'll be crossing everything I have for you on Monday and I'm so glad you're being so level headed about it, it's all of our worst fears and sometimes that can blinker us to other symptoms. there is absolutely NOTHING easy about being level headed when your kid is hurting, I know, I seldom manage it. That's why I'm so impressed that you are doing your utmmost to present all sides

Warm wishes
Helen

I'm so glad Lelimey chimed in, she's unfortunately, one of the grizzled vets in the "kids with ch" department. And don't beat yourself up over your kid having CH. The CH is just the luck of the draw. How awesome to have a dad already paving the CH road for you. Let's you skip out on the years and years most of us went through trying to get an accurate diagnosis.

Wishing you peace and some PF time for the little guy.

Guiseppi

Just wanted to say good luck for today - fingers crossed here for you all!!

Helen

man i realy need to pay closer attention to this part of the board. i started getting clusters when i was 11. my cycles would usually come  during physical growth changes while growing up. mom seemed to think it had something to do with hormones but who knows. the watery mucus would come later in the cycle when the attacks were most severe, however  the severe stage of the cycle did not last as long as they do as an adult.
as for when my attacks are over it's like somebody turned of the pain valve off. i can go  from  screaming bloody murder to green grass and blue skies in 60 to 90 seconds.    lack of physical activity will usually start one back up in  less than an hour. and this goes on all day and all night. when i was in school i would get alot of hits while sitting  in class.
be sure to get a propper diognosis. any info we have would be useless against migraines.
i hope this  helps. if things start getting rough, pm one of us with your #. ;)

Forgive me for this line of questioning, OK?

1) Any tramatic events in the family recently? Death, divorce, Iraq??
2) Is it possible he has headaches but is mimmicking your CH severity?
3) Anything strange @ school? New class, new teacher, bully???
4) Did you loose a pet recently?
5) Have a new addtion to the family recently?

I get a strange feeling that your son is enriching his behavoir and mimicking daddy's. Why? I don't know but you need to look around and ask that yourself.


Food for thought.
TomM