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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Cluster Headaches since Age 2?
        
(Message started by: tanenterp on Aug 10^th, 2004, 1:37pm)

Title: Cluster Headaches since Age 2?
Post by tanenterp on Aug 10^th, 2004, 1:37pm

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

Title: Re: Cluster Headaches since Age 2?
Post by IndianaJohn on Aug 10^th, 2004, 1:43pm

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!

Title: Re: Cluster Headaches since Age 2?
Post by Superpain on Aug 10^th, 2004, 2:02pm

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....

Title: Re: Cluster Headaches since Age 2?
Post by synergy2120 on Aug 10^th, 2004, 2:09pm

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

Title: Re: Cluster Headaches since Age 2?
Post by writer on Aug 10^th, 2004, 2:09pm

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

Title: Re: Cluster Headaches since Age 2?
Post by pubgirl on Aug 10^th, 2004, 2:11pm

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

Title: Re: Cluster Headaches since Age 2?
Post by Margi on Aug 10^th, 2004, 2:19pm

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.

Title: Re: Cluster Headaches since Age 2?
Post by don on Aug 10^th, 2004, 3:16pm

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

Title: Re: Cluster Headaches since Age 2?
Post by alleyoop on Aug 10^th, 2004, 9:56pm

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

Title: Re: Cluster Headaches since Age 2?
Post by tanenterp on Aug 11^th, 2004, 11:19am

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

Title: Re: Cluster Headaches since Age 2?
Post by alleyoop on Aug 11^th, 2004, 2:52pm

Dear Susan and Paul,

I followed your link to the ML4 site. It is truly humbling to see what you guys are dealing with. Such a horribly debilitating disease for such a young innocent life - and then add on top of that the excruciating pain of clusters! I do believe in God with all of my heart, as I'm sure the two of you do. But if there are ever times when I question my faith, it's when I see a situation like this one.

That being said, let's see what we can do to help Lilly! I'm still trying to find someone out there in a similar situation- someone who has a child with clusters. It doesn't appear to be an easy task, but I'm not giving up. In the meantime, I found some more links you might want to explore:
http://www.aafp.org/afp/20020215/625.html
http://healthlink.mcw.edu/article/963337560.html
http://www.medicationsense.com/migraine_headaches.html
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/neuro/headache.html
http://www.med.uvm.edu/ahec/downloads/Content/Text%20For%20Site/Nursing%20Grand%20Rounds/Headache%20in%20Children.pdf

I continue to pray for your family...................

Bob Bowling
locman49@bellsouth.net