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Topic: Post from LizziesMom (Read 822 times) |
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Margi
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Post from LizziesMom
« on: Apr 24th, 2003, 11:24am » |
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Here's Lizzie's Mom's post that was under the header topic on this board....
Re: Cluster Kids
« Reply #14 on: Today at 9:46am »
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Hi I'm a mom that needs to know that kids can deal with this. If anyone wants to talk let me know. My 14 yr old daughter has had these since she was 6 years old. We deal with them the best we can but it would be nice to have others to talk to about this beast. Thanks in advance.
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jonny
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Hi Lizzies Mom,
My names jonny and I started chronic CH at the age of 14, it was really tough at that age but I never told my mom or let her see me in pain. When Mom finaly did see what I was going through it didnt matter because we were on welfare and no Docs wanted to find out what was wrong, they just wanted to get you in and out like cattle.
I for one can say that your child will be ok in life, Hell!!!, im 40 now and own a company, fine home, fine cars and im still chronic.
You are so lucky that you have this website that I did not......That to me means your kid will turn out even better than I did.
Good luck and e-mail me if you would like.
...........................Tears in eyes..................jonny
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Azrael
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Re: Post from LizziesMom
« Reply #2 on: Apr 24th, 2003, 8:35pm » |
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The best advice I have is not to let the docs just brush you and your daughter aside. All too often, doctors can be very worthless when it comes to childhood ailments that can't be proven on a bloodtest, or seen on an X-ray. See a neurologist, or a pediatric neurologist if one's available in your area, and get your daughter a treatment plan. Like Jonny said, she'll still be able to live her life with these things, but it'll be alot better for her if y'all can find a treatment plan that works, and affords her many many pain free days. Good luck!
PFDAN to you and your's.................................... Drk^Angel
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kim
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Re: Post from LizziesMom
« Reply #3 on: May 20th, 2003, 8:59pm » |
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Hi Lizzie's Mom,
I have been episodic cluster sufferer since childhood - about 13. I had pain episodes when very young, but I was too young to be able to communicate/pin point, and my folks treated as ear-aches.
Kids are resilient and much more optimistic minded than grown ups 
I can only urge you to seek out all the information you can, and try and establish a relationship with a good neurologist. The more tools you have the better equipped you and Lizzie will be.
Wishing you and Lizzie all the best!
Kim
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Camerooskis_Mom
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Re: Post from LizziesMom
« Reply #4 on: May 30th, 2003, 3:02pm » |
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Hi Lizzy's Mom,
{{{{{Hugs}}}}} to you & your daughter. As a newbie (CHs started for my son last August) I do not have much advise to depart but I do empathize with what you are going through.
It is soon June which means another round of DR appts (one w/ the HA clinic, another w/ the the Pedio Neuro and then the followup consult w/ our Pediatrician. At 14, you have many options that aren't yet open to us (my son is 7 and a very small 7). I like the advise of keeping at those doctors.
Good Luck!
Camie's Mom
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Ree
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Re: Post from LizziesMom
« Reply #5 on: May 30th, 2003, 4:04pm » |
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Hi My daughter hasnt yet been diagnosed with CH but definately has a headache issue... I felt that the neuro that we saw knew nothing about CH and just brushed us off... $250 bucks from the insurance company later ... I am disgusted. Good thing for my daughter that we have the experience that we have with Dave if it is CH... Keep coming here we have a wealth of information and the price is right... Experience is the best teacher. love and luck to you and your little one... love Ree
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cathy
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Re: Post from LizziesMom
« Reply #6 on: May 30th, 2003, 5:12pm » |
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Lizzie...soooo sorry to hear that your daughter has to go through this. Take the advice being given here.
Love and Hugs to you and your family.
Cathy
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