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Camerooskis_Mom
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Vocabulary List - No Joke
« on: Nov 5th, 2003, 10:05am » |
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I'm in need of a little assistance, I have an 8 year old with the preliminary diagnosis of CH (been just over a year). It's been a challenge but this site has been a great help. But I need some more.
It can often be overlooked that children need to be taught words in order for them to communicate their pain, feelings, etc... For example, a young child will state, "I'm mad!" But it takes experience and teaching for them to help distinguish between, "I'm angry." or "I'm frustrated."
Until yesterday, I had never heard the term "Shadow." It's like a lightening bolt for me and helps me talk to Camie about what he is going through and helps me categorize things better. Could you help me compile a list of words, or descriptions that could help me teach Camie to tell me what's going on beyond the obvious? It would go along way to helping me help him.
Thanks!
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Bob P
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Re: Vocabulary List - No Joke
« Reply #1 on: Nov 5th, 2003, 10:09am » |
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From Goadsby's article in the OUCH Library:
A cluster headache or attack is an individual episode of pain that can last from a few minutes to some hours. A cluster bout or period refers to the time over which recurrent cluster attacks occur; it usually lasts some weeks or months. CH has highly distinctive clinical features which are dealt with here under two major headings - the cluster attack and the cluster bout.
The Cluster attack
The attacks are strictly unilateral, although the headache may alternate sides. The pain is excruciatingly severe. It is located mainly around the orbital and temporal regions, although any part of the head can be affected. The headache usually lasts 45 to 90 minutes but can range from 15 minutes to three hours. It has an abrupt onset and cessation.
The significant feature of CH is its association with autonomic symptoms, and it is extremely unusual for these to be reported. The International Headache Society classification diagnostic criteria require the cluster attacks to be accompanied by at least one of the following, which have to be present on the pain side: conjunctival injection (bloodshot eye), lacrimation (teary eye), miosis (constricted pupil), ptosis (droopy eyelid), eyelid edema (swollen eyelid), rhinorrhoea (runny nose), nasal blockage, and forehead or facial sweating. The autonomic features are transient, lasting only for the duration of the attack.
Premonitory symptoms of tiredness and yawning, and associated features of nausea, vomiting, photophobia, phonophobia and aura symptoms have all been described in relationship to cluster attacks. However, in contrast to migraine, CH sufferers are usually restless and irritable, preferring to move about, looking for movement or posture that may relieve the pain.
Cluster attack frequency varies between one on alternate days to three a day, although some have up to eight a day.
Alcohol, nitroglycerine, exercise and elevated environmental temperature are recognised precipitants of acute cluster attacks.
The cluster bout
CH is classified according to the duration of the bout. About 80 to 90 per cent of patients have episodic cluster headache (ECH), which is diagnosed when they experience recurrent bouts, each with a duration of more than a week and separated by remissions lasting more than two weeks. The remaining ten to 20 per cent of patients have chronic cluster headache (CCH) in which either no remission occurs within a year or the remissions last less than 14 days.
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Kirk
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Re: Vocabulary List - No Joke
« Reply #2 on: Nov 5th, 2003, 10:41am » |
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Would teaching the Kip scale to the little fella be of any use to you. It can be fairly informative, in very few words.
Just a thought maybe not a good one.
Best of luck to you.
TTFN
Kirk
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Camerooskis_Mom
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Re: Vocabulary List - No Joke
« Reply #3 on: Nov 5th, 2003, 10:59am » |
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We are using the Kip Scale & the wong faces.
I'm having trouble getting him to distinguish between the stabbing pains and the pain that just sits behind his eye....things like that. To him, a headache is a headache that he puts a number or face to.
For example, getting him to tell me what it feels like or what the pressure feels like when an attack is coming on is getting no where - he doesn't know how to tell me what it feels like so I can't intercede or even ask him from one attack to the next if he had that feeling before the headache--hence teach him that he can attack this thing before it attacks him. (I posted yesterday in the Children's Corner that he is typical little boy & will ignore things until the last minute if it means he gets to play at that moment).
This is what I meant by needing descriptive words & things.
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Margi
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Re: Vocabulary List - No Joke
« Reply #4 on: Nov 5th, 2003, 11:12am » |
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Hi again, Cam's mom.
I think what you're doing here is very admirable in trying to educate your son. I think it would also be a great idea for you to read everything YOU can find on the subject and there really IS some good information in the buttons to the left here, that do describe the pain. It's almost as if you, as his supporter, need to become a clusterhead for a moment in order to understand the afflicition. (That's something we've probably all tried but can never achieve, hence the completely helpless feeling we supporters get.)
I think YOU might get some benefit out of really reading and absorbing the Kip scale, too - BobKipple really nailed the description. Another thing you can do is go back into the archives and read the posts in the first year. That was a time when we all were learning so much about each other and there were some amazing posts written in those days. Specifically, try to read as much as you can from a guy named Drummer. He really had a talent for putting things into words. There was a lot of comedy in those days, too - so you'll have to sift through some of it, but do try to find some of his technical writing. He was in communication a lot with Doctor Goadsby in those days and he did some wonderful writing.....
I'll try to find some time today to find you some of Drummer's (his real name is Dave Greenly) posts and send you some links.
You're a great Mom, by the way. 
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totka
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CCH update
« Reply #5 on: Nov 5th, 2003, 11:20am » |
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"This year, 2003, the IHS updated their criteria and classifications on cluster headaches, and the criteria for chronic cluster changed. Previously it was cluster attacks that lasted more than one year with less than 14 consecutive days in remission. Chronic is now considered cluster attacks lasting more than one year with less than 30 consecutive days of remission IRREGARDLESS of medication."
(http://www.clusterheadaches.org/conventions/2003/report.htm)
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AlienSpaceBabe
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Re: Vocabulary List - No Joke
« Reply #6 on: Nov 5th, 2003, 1:40pm » |
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A thought.....
Maybe helping him relate it to something else that's happening/happened in his life will help....
A shadow just sits there behind the eye.... when your sister punches you in the arm, it's sore for a while.
A typical CH (for me) is sharper. It hurts more than a shadow and is gone faster... A mosquito bite jabs, then it's gone. Same with a shot you get at the doctor.
If he likes cars: a car that's running but not moving is like a shadow; a car that's racing really fast is like a CH.
Just an idea.....
Lizzie
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| « Last Edit: Nov 5th, 2003, 1:41pm by AlienSpaceBabe » |
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Camerooskis_Mom
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Re: Vocabulary List - No Joke
« Reply #7 on: Nov 5th, 2003, 2:10pm » |
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Lizzie - that is great suggestion! That is exactly what I need.
I feel like such a bad mom - had to be told by another mom to train him to swallow his pills by using the orange Tic-Tacs (he had a really hard time learning).
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Ann
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Re: Vocabulary List - No Joke
« Reply #8 on: Nov 5th, 2003, 4:41pm » |
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How about using colours?
Red = full blown attack
orange = beginning
green = shadow
white = all is ok
just a thought
hugs
Ann
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Dave_Emond
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Re: Vocabulary List - No Joke
« Reply #9 on: Nov 5th, 2003, 5:20pm » |
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Camie's Mom,
I've been working on a project for parents who have children with CH. It is not complete yet, but feel as if maybe some of the information may be of help to you now. Maybe you in turn might offer suggestions or feed back as to how this helps your child and you? Once completed, we will be looking at formating it to a printable version. Family Services members might also wish to comment.
Hope this helps somewhat, or a lot?
Dave
Parent's Guide For Teens & Children With Cluster Headaches
http://hometown.aol.com/explodingeye/index.html
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Ree
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Re: Vocabulary List - No Joke
« Reply #10 on: Nov 5th, 2003, 5:20pm » |
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I wish I could help you also I like Kirks idea about the kip scale but you could do it with happy faces and make the face a little bit less painful each time... this is how they work to communicate intensity of pain in our school nurses office... I could see if I could get a copy for you...I work with kids also, if I put my mind to work I could make up some charts for Cammy... I also do graphic work and he could have whatever theme that he likes... What is he into???
We had a bout with what we thought might be CPH with my daughter Gabrielle "Breezy" Her dad is an eposodic cluster sufferer and I have Migraine chronically.
We cannot find a good Pediatric Neurologist that knows more about Headache than me!!!! its a bummer... What is Cammy on???
I don't go over to the childrens section very often because it breaks my heart to read those posts. I think I am a big CHICKEN, and in denial about Breezy's head... Having dealt with these for 15+ years with my hubby, I am not ready to give her up to the Beast too... I am hoping it was a phase or sinus problem. We will soon see as that time of year is approaching...
God Bless your heart for dealing with the suffering that you have to see. I wish I could take it away from you for even one day... let me know what I can do for you...ree Ree16angel@aol.com
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| « Last Edit: Nov 5th, 2003, 5:22pm by Ree » |
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Charlie
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Re: Vocabulary List - No Joke
« Reply #11 on: Nov 5th, 2003, 5:44pm » |
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Cluster headache has nothing to do with what one thinks of as a headache. It's not a headache, it's a horror. It’s in the head but the similarity ends there. Other headaches don’t wake one out of a sound sleep or make the very idea of sleep or rest a luxury. It’s not a throbbing but a constant state of agony. It’s comparable to putting your hand on a hot iron and not being able to let go.
Maybe that will help you make others know you’re serious. Horror is the best I can do.
Good luck and let us know how it's going.
Charlie
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sherryberry
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Re: Vocabulary List - No Joke
« Reply #12 on: Nov 5th, 2003, 8:54pm » |
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I started getting these when I was around 10... I have always thought of them as feeling like a muscle cramp in my head.
Has he ever had a foot cramp? Most of us have. For me, the CH attack starts out feeling like a tiny muscle cramp in my head, and like a cramp, gets worse and worse and worse and then slowly, slowly goes away in a pulsating way, just as a foot cramp will go away on it's own if you don't stretch it out... It releases in stages. It is during the release of this "cramp" in my head that I get "shooting pains" ... it is the kind of pain that makes you gasp, or suck in your breath real fast, or that makes you make a sound. It is the kind of pain that surprises you because it hurts VERY much AND it is fast like lightning. Those pains come while I am still getting the steady, but slowly releasing "cramp" pain.
Try reading the above to him and see what he says... He might be able to relate to it and if he is able to relate to the "cramp" metaphor, you might be able to get him to recognize the beginning a little better.
Good Luck, and don't take this wrong, cuz I don't know you and I am sure you are doing the right thing, but I just thought of this...
I think the most important thing you can do for your child if he has CH is to NOT frighten him and DO NOT let him see your worry or fright. If YOU don't make a big deal of it... HE won't make a big deal of it, and he will be much better able to deal with it in the future!!
Let us know how it goes!
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Patrick_A
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Re: Vocabulary List - No Joke
« Reply #13 on: Nov 6th, 2003, 10:53am » |
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Maybe i am wrong, But i think the boy understands he has a headache. I think what the Mom wants is for the son to be able to tell her when it is starting so she can attack the CH early before it is full blown. How do you teach a child to recognize the early signs so that the pain is more manageable?
I wake up at night sometimes 10 minutes before my CH is full blown. In fact it will only be about a Kip2 or 3 when i wake up. It comes from experience and also knowing if i attack it early, i have a chance to reduce the pain to a manageable level
I am sorry, I dont have children, so therefore i dont have enough experience on how to teach them to acknowledge the early signs!
Good luck, Patrick
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Big Dan
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Re: Vocabulary List - No Joke
« Reply #14 on: Nov 6th, 2003, 12:29pm » |
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Mom...
... There is no reason for you to feel like a 'bad mother'...
These things are hard enough for us to describe to ourselves, much less to someone that's never had one...
... In time, he'll figure out which way to describe them, and what to look for when he's getting ready to be 'visited'... and so will you.
I'm terribly sorry for his pain, and I understand that you feel helpless. My parents STILL don't fully understand, and I've been a diagnosed CH'er since I was 17 (now 23)....
You may want to try and break the Kip scale down for him a bit... instead of 10 degrees of pain, try 3 degrees...
1) Hurts a little
2) Hurts a lot
3) Hurts too much
... Kids have a hard time distinguishing between smaller incriments (sp) of pain, so make each degree cover a broader spectrum... for all he may know, a 7 and a 9 are the same thing....
Just my thoughts...
-Big Dan
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KingOfPain
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Re: Vocabulary List - No Joke
« Reply #15 on: Nov 7th, 2003, 6:31am » |
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Just an idea........
How about (for him) comparing
going "potty" to/with the headaches?
We all know, as he does I am sure,
there is a difference between the
beginning of the need to go,
& the urgency/emergency of
HAVE TO GO!
Maybe have him relate the
early feelings of needing the
use of the restroom to the
early feelings of the pain.
As in (shadow(s)):
"Mommy, I think I
need to go to the bathroom."
Related to:
"Mommy, I think I am
getting/feeling a headache."
Then (attack(s)):
"Mommy, I think I am about
to pee my pants."
Related to:
"Mommy, it hurts really,really bad."
A Saying I heard before:
"When Mother Nature calls,
she calls.
When she screams,
you better pay attention!"
Hope this helps.
KingOfPain
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| « Last Edit: Nov 7th, 2003, 6:43am by KingOfPain » |
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AlienSpaceBabe
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Re: Vocabulary List - No Joke
« Reply #16 on: Nov 7th, 2003, 3:38pm » |
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on Nov 5th, 2003, 2:10pm, Camerooskis_Mom wrote:Lizzie - that is great suggestion! That is exactly what I need.
I feel like such a bad mom - had to be told by another mom to train him to swallow his pills by using the orange Tic-Tacs (he had a really hard time learning). |
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Nope... definitely not a bad mom!! If the kids came out with a darn manual we'd have an easier time. Until then we support eachother and make suggestions. There's lots of stuff that I picked up from others. (Like the time I was standing in the grocery line with the kids... they were crabby, I was crabby and too tired to yell.... so i said "hey, we're all tired and crabby. let's just get through this so we can go home and have family time." some wonderful older woman said she wished she heard more of that.... and it was just because I was too tired to yell....)
Signs of a GREAT mom:
Trying to help your children express themselves
Hurting when your children hurt
Asking for help/ideas
Finding new ways to get through to your kids
So it looks like you qualify as a GREAT mom!!
Lizzie
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Camerooskis_Mom
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Re: Vocabulary List - No Joke
« Reply #17 on: Nov 12th, 2003, 4:02pm » |
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I would like to express my deepest and sincerest thanks for your thoughtful responses. I have been slow to respond but I have been taking notes - looking up Dave's page link and going thru the archieves.
I would like to come back in (2) weeks to post an update if I may.
Cameron is in full blown cycles now and we are a little exhausted but getting things done. (Another reason I would like some time to get thoughts organized  )
Thanks Again - I do appreciate all the help, comments, suggestions, hugs and warm & fuzzy thoughts.
Laurie
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