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Topic: A small child with clusters (IMPORTANT) (Read 875 times) |
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don
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A small child with clusters (IMPORTANT)
« on: Aug 10th, 2004, 3:18pm » |
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Brought this over from the other board. Its important.
Quote:Hello,
My 3 year old daughter was just diagnosed with Cluster Headaches. She has had them for at least 1 year. The earlier diagnosis from NIH (National Institute of Health) was trigeminal neuralgia, but she went to Johns Hopkins today, and two pediatric neurologists gave the new diagnosis of Cluster Headache (she had a reaction in the doctor's office, so they could observe it first hand).
She has these "episodes" appx. 2 times a day, every day. They are characteristized by redness and inflammation of one side of her nose and eye, and extreme pain. It lasts from 5-20 minutes.
When I looked at the website, I did not see any information about cluster headaches in children. It also seems that this is rare for females.
Has anyone out there heard about Cluster Headaches in small children? If so, I would love to hear from you.
Thank you and best wishes,
Paul Tanenholz
tanenholz@hotmail.com
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Leesa
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Re: A small child with clusters (IMPORTANT)
« Reply #1 on: Aug 10th, 2004, 3:25pm » |
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OMG!!! This just SUCKS a 3 yr old with CH!!! I cant even think of what that little one is dealin with. My God in heaven............its bad nuff in adults but a child? Im ballin now!!! Yet Im mad as hell!!!!
Leesa  
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Jeepgun
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Re: A small child with clusters (IMPORTANT)
« Reply #2 on: Aug 10th, 2004, 3:28pm » |
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OMG, this sucks.... That poor little girl...
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don
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Re: A small child with clusters (IMPORTANT)
« Reply #3 on: Aug 10th, 2004, 3:28pm » |
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Hope your mad enough to do some internet searching to get this kid some help.
I am.
HEY GOD! WHAT THE FUCK?
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Mark C
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Re: A small child with clusters (IMPORTANT)
« Reply #4 on: Aug 10th, 2004, 3:30pm » |
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~~~~Working on it~~~~
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| « Last Edit: Aug 10th, 2004, 3:30pm by Mark C » |
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JDH
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Re: A small child with clusters (IMPORTANT)
« Reply #5 on: Aug 10th, 2004, 3:30pm » |
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That's just hideous.
Wish there were a way I could take the h/a's instead of her having to deal with it.
Jim 
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echo
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Re: A small child with clusters (IMPORTANT)
« Reply #6 on: Aug 10th, 2004, 3:31pm » |
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So far I havn't found anything for anyone under the teenage years.
Three ?? That's just not fair! How, as a parent you could cope is beyond me.
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| « Last Edit: Aug 10th, 2004, 3:31pm by echo » |
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Gator
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Re: A small child with clusters (IMPORTANT)
« Reply #7 on: Aug 10th, 2004, 3:38pm » |
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This disease is bad enough for an adult who knows what is going on. A small child like that getting hit is beyond comprehension. I can't imagine watching my children go through an attack. As a parent how do you deal with something like that?
Gator
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pubgirl
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Re: A small child with clusters (IMPORTANT)
« Reply #8 on: Aug 10th, 2004, 3:40pm » |
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It is beyond the realms of fair. Poor, poor kid and family.
Goadsby reported a one year old CH sufferer but I have no idea what the treatment was. If all else fails, we can email him and ask for advice
Wendy
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Margi
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Re: A small child with clusters (IMPORTANT)
« Reply #9 on: Aug 10th, 2004, 3:42pm » |
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um, Don? I posted a link to the OUCH page on kids with clusters in that thread, just before you posted. There's some excellent info available.
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Jayne
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Re: A small child with clusters (IMPORTANT)
« Reply #10 on: Aug 10th, 2004, 3:46pm » |
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Hey the man upstairs.....we will all take our share of a few more headaches if you take away this little girls headaches, why don't you start with me!!!!!!
I think that is a great idea if someone from England could contact Dr Goadsby to find out how to go about treating a 3 year old.
I am so sorry your child is going through this,
Love Jayne
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catlind
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Re: A small child with clusters (IMPORTANT)
« Reply #12 on: Aug 10th, 2004, 3:52pm » |
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I've sent an enquiry, will try to do anything I can to help this little one. This is NOT right. No child should have to suffer this.
Cat
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Re: A small child with clusters (IMPORTANT)
« Reply #13 on: Aug 10th, 2004, 3:54pm » |
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Everyone, write to ACHE - Dr. Jan Brandes, AHS - Dr. Todd Rozen, NHF, WHA and anything else you can think of. We need to get some serious attention to this little girl and any other small child suffering.
Cat
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Carl_D
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Re: A small child with clusters (IMPORTANT)
« Reply #14 on: Aug 10th, 2004, 3:59pm » |
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No small child should EVER know this kind of pain.
Seems everyday I lose a little more faith in a loving, merciful, just God.
Peace,
Carl D
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pubgirl
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Re: A small child with clusters (IMPORTANT)
« Reply #15 on: Aug 10th, 2004, 4:00pm » |
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Jayne and Cat
Message asking for advice winging it's way this side of the pond.
Will reply as soon as I hear something
Wendy
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notseinfeld
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Re: A small child with clusters (IMPORTANT)
« Reply #16 on: Aug 10th, 2004, 4:10pm » |
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Whew.
I remember writing to a woman who posted here about a year ago in regards to a 7 or 8 year old boy diagnosed with CH. It would probably be helpful to contact her to see what, if anything, she discovered.
This situation is horrific Paul and I think I speak for everyone when I say that we'll do whatever is necessary to help you and your daughter.
UPDATE: Her login name was Camerooskis_Mom and last contact was in November, 2003. Let's see if I can contact her.
nots
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Re: A small child with clusters (IMPORTANT)
« Reply #17 on: Aug 10th, 2004, 5:19pm » |
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i haven't stopped crying since i read this post. my son is 3 and i cant imagine the horror of watching any child suffer like this. Paul, anything you need just ask. krista
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Re: A small child with clusters (IMPORTANT)
« Reply #18 on: Aug 10th, 2004, 5:28pm » |
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OMG, that just sucks pond water. I would put it another way but I am trying to be polite. I am sitting here crying my eyes out, how can it happen to a child that young. Just give me her hits, I will take them with pleasure. I will be praying for her daily and for the Dr.s so they can come up with something to help her FAST.
Prayers and hugs to her and your family
Bec
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Re: A small child with clusters (IMPORTANT)
« Reply #19 on: Aug 10th, 2004, 6:14pm » |
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I can't believe this!!!!!
Beyond unfair, just plain wrong.
What I wouldn't so to help this child and her parents.
So difficult for us as adults to function with this but a child!!!!!!
I'm pissed!!!!!!!!!!&
Still crying
Eric
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Re: A small child with clusters (IMPORTANT)
« Reply #20 on: Aug 10th, 2004, 6:27pm » |
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OMG... that is just soooo wrong...Looking to see what I can find to help..
Shari
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Re: A small child with clusters (IMPORTANT)
« Reply #21 on: Aug 10th, 2004, 7:12pm » |
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on Aug 10th, 2004, 3:54pm, catlind wrote:Everyone, write to ACHE - Dr. Jan Brandes, AHS - Dr. Todd Rozen, NHF, WHA and anything else you can think of. We need to get some serious attention to this little girl and any other small child suffering.
Cat |
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Todd Rozen is my neurologist. He is now at MHNI.
He can be reached by their website at www.mhni.com or by calling (734) 677 - 6000.
If anyone knows how to treat a child with CH, he's one of them !
Unsolved (I'd take the pain for her if I could ... i'm already used to it)
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farmboy
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Re: A small child with clusters (IMPORTANT)
« Reply #22 on: Aug 10th, 2004, 7:37pm » |
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That is just way to bad. No child should be afflicted with this. It is at time like this i begin to wonder why god would let something like this continue.
I feel for the family. This child has to suffer it is not fair.
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Re: A small child with clusters (IMPORTANT)
« Reply #23 on: Aug 10th, 2004, 7:59pm » |
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It's hard to imagine a three year old having to deal with this horror. I believe there are a few posts about children but no one so young.
I'm not sure what to do for her. I suppose you have to be very careful drugs for someone so young and I don't know if other ideas are feasible at that age or effective.
My suggestion is to keep tabs on this thread and others as I'm sure we will find something for you in time.
So very sorry for her and your family.
Charlie
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Re: A small child with clusters (IMPORTANT)
« Reply #24 on: Aug 10th, 2004, 8:01pm » |
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It causes me great pain to think of a small child having to deal with the horror of clusters.
I pray for answers for her and her family.
But it pains me more to see people cursing the very God they recently begged for help for another sufferer. Why the sudden change in respect for the only one who will be really able to help?
Annette
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