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        Supporter's Corner >> Children and Cluster's >> This forum breaks my heart
        
(Message started by: Lietuvos on Jan 30^th, 2006, 8:01pm)

Title: This forum breaks my heart
Post by Lietuvos on Jan 30^th, 2006, 8:01pm

I have suffered CH since i was 12 (I'm 35 now). To hear that children as young as 6 suffer, breaks my heart. Unfortanatly, i have no cure....only advice. Do all you can to help your child cope with this demon. It is not your fault...you did nothing to cause this curse. My advice is gather as much info you can and be active in the treatments, be patient and understanding. Read all you can on CH....become an authority. talk to sufferers and suppoeters alike. We are here to help. If I or anyone from this forum finds a cure we will run to you like our pants are on fire.

good luck and i'm sorry for yours and your childs pain.

Title: Re: This forum breaks my heart
Post by LeLimey on Jan 31^st, 2006, 4:00am

My son is now 4 and has been diagnosed with ch since the age of 3. I know another little girl of five who has had PH since she was 3 years old too. It IS tragic but sadly it's something we have to deal with as positively as we can and teach our kids to fight it.
I am a sufferer too and I can learn alot from my son. He get's hit and once it's over for him - its over. Thats it, finished. He doesn't think about it again until the next one. He doesn't waste time dreading it the way we adults do sometimes. If there is one thing I can carry forward for him as he grows it would be that attitude.
And in the meantime I'll do all I can to help any parent who has a child with CH or PH or thinks their child may have it.

Title: Re: This forum breaks my heart
Post by outofcommission on Feb 24^th, 2006, 6:47pm

i have had chs since i was 13. i am now 29. this was commonly misdiagnosed as toothaches, sinus problems, or stress headaches. i personally would take 5 toothaches over a ch anytime. it is hard to have this condition as a child and try to explain it to an adult. even my doctor didn't know about chs and he has been a doctor for 25 + years. these cycles would come and go every couple of years. i am currently on my 5Th year without a ch. in the past 5 years i have been laid of from a good job, changed careers, got married, bought a house, and my wife had a baby. no chs