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Topic: Cluster Headaches since Age 2? (Read 350 times) |
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tanenterp
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Cluster Headaches since Age 2?
« on: Aug 10th, 2004, 1:37pm » |
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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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IndianaJohn
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Re: Cluster Headaches since Age 2?
« Reply #1 on: Aug 10th, 2004, 1:43pm » |
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Hello Paul,
I'm so sorry to hear about your little girl. There is a message board under supporter's corner specifically for CH and children.
Best of luck to you and your daughter!
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Superpain
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GOT O2!?
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Re: Cluster Headaches since Age 2?
« Reply #2 on: Aug 10th, 2004, 2:02pm » |
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Damn... I hope they're wrong. 
If she has cluster's, the info is going to be pretty much the same I think with the exception of the meds. Unfortunately she probably will not be able to use alot of the medications for several yrs.
But if O2 works for her it may be her only refuge. I'd investigate that with the doc's if I were you.
Good luck....
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Chris
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synergy2120
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Re: Cluster Headaches since Age 2?
« Reply #3 on: Aug 10th, 2004, 2:09pm » |
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So sorry to hear about your daughter - whether its CH or not it must be heartbreaking to see your child in pain.
Check out the children and CH forum on this site - it might prove helpful to you.
Luv sarah xx
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writer
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Re: Cluster Headaches since Age 2?
« Reply #4 on: Aug 10th, 2004, 2:09pm » |
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In case it's of any interest, neurologist and author Oliver Sacks remembers having his first headache at age two. He is the author of many volumes including one which I believe is called MIGRAINE (or maybe HEADACHE) which contains some fascinating case histories.
Most public libraries have his books as well as, of course, Amazon and similar.
I was terribly sorry to hear about your little girl--it's bad enough that an adult should have to experience this pain, but a child?
Writer
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pubgirl
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Re: Cluster Headaches since Age 2?
« Reply #5 on: Aug 10th, 2004, 2:11pm » |
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Paul
How truly truly awful for you and her and your family. The youngest recorded child we have here was age 1 at onset, so it is rare but not unheard of.
I can only wish her and you all the best medical help you can get
Wendy
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Margi
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Re: Cluster Headaches since Age 2?
« Reply #6 on: Aug 10th, 2004, 2:19pm » |
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Hi Paul, I am so sorry to hear of your little girl's diagnosis.
There is some fabulous information over at the OUCH Website about clusters in kids:
http://www.clusterheadaches.org/resources/kids.htm
I would think oxygen really is your only defense in someone that young. And ice - use a pliable ice pack (or a bag of frozen peas) and lay it on the back of her neck or at the location of her pain. It really can help a little bit.
My heart just aches for you.
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don
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Re: Cluster Headaches since Age 2?
« Reply #7 on: Aug 10th, 2004, 3:16pm » |
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Reading stuff like this makes me question God himself.
I'll search around the web for something on children with clusters.
Everyone should.
Also, I carried your post over to the "general discussion" board for as much input as possible.
Heres a little something.
http://www.chhelp.org/children.html
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| « Last Edit: Aug 10th, 2004, 3:47pm by don » |
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alleyoop
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Re: Cluster Headaches since Age 2?
« Reply #8 on: Aug 10th, 2004, 9:56pm » |
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So sorry to hear about your daughter, Paul. Please check the General Message Board. There has been some positive response that you might care to read there. I will pray for your daughter, as well as you and your wife, as that is the most positive thing I know to do. I also found some links dealing with children with Clusters. I posted them on the General board. I hope they help.
May God bless you and your family.
...................................................alley
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tanenterp
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Re: Cluster Headaches since Age 2?
« Reply #9 on: Aug 11th, 2004, 11:19am » |
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Hello Everyone,
My wife Susan and I are “blown away” by the number of people that have responded to our inquiry, and the depths of your concern.
We wanted to provide a little more information about our 3 year old daughter. Besides having Cluster Headaches, she also has a rare genetic condition called Mucolipidosis Type IV, or “ML4”.
Persons with ML4 are unable to walk, unable to speak, and go blind by age 20. There is currently no cure or treatment for ML4. (If you would like to know more about ML4, please visit the web site www.ml4.org.)
Lily started having what we called an “eye-nose thing” when she was 18 months old. This is what we called the Cluster Headaches, because one eye and the corresponding half of her nose would turn bright red, and she would scream in pain for 5 to 20 minutes. This would happen as rarely as a few times a week, to multiple times a day.
When we got the diagnosis of ML4 last year, we assumed that this “eye-nose thing” was part of the condition. However, NONE of the other individuals with ML4 had this reaction.
Last month, they started her on Tegretol to treat the attacks. This seemed to work for the first few days, but after that, the pain/symptoms returned.
Yesterday, we went to some pediatric neurologists at Johns Hopkins. She had an attack during the visit, and the doctors all said it is a “Cluster Headache”. We had not heard of this term before yesterday, so I did a search on the net, and found you!
We will be having a follow up appointment in six weeks to discuss other treatment options.
Until then, we are hopeful that someone (doctor or affected individual) will be able to identify another child with Cluster Headaches, so we can talk to them.
Thank you all so much! You are a wonderful source of support and information.
Best Wishes,
Paul and Susan Tanenholz
tanenholz@hotmail.com
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