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   Does anyone else's child have vision loss?
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   Author  Topic: Does anyone else's child have vision loss?  (Read 1598 times)
6kidcrazy
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Does anyone else's child have vision loss?
« on: May 1st, 2008, 1:33pm »
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My son is 11 yrs. old and he has had CH since he was a baby but was  officially diagnosed in the last few years. He gets them mostly in his left eye and it is the most horrifying thing I have ever gone through. He went to the doctor today and they said he had vision loss in his left eye. Does anyone know if this may be related to his CH.
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DonnaH_again
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Re: Does anyone else's child have vision loss?
« Reply #1 on: May 12th, 2008, 11:36pm »
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I am so sorry to hear that your little child suffers CH. It must be just horrible to see this little child go through this.  My son started with migraine in the 6th grade and progressed to CH at age 17.  
 
What meds is your doctor treating with?  Is this a neurologist?
 
In my 9 years on this board, I have never heard of vision loss related to CH.
 
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6kidcrazy
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Re: Does anyone else's child have vision loss?
« Reply #2 on: May 13th, 2008, 1:35pm »
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Well  he has had  CH since he was an  infant  but he sees a Neuro and a headache clinic at Texas Children's that specializes in CH but he is only 1 of like 4 children  in the clinic that have CH being that it is so unusual in kids his age well at least that have been diagnosed correctly. I have fought for years telling the doctor it was not migranes these were way worse and only lasted for 10 to 30 min. His only attack pattern has been in his left eye and never varied so we are going to TCH to see and Opthamologist to find out for sure.  Thank You for responding it is so nice to have someone to talk to that sees the real trauma behind this horrible thing CH. Many people do not understand why he can't just rin and bear it when it comes on. It really stinks.
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6kidcrazy
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Re: Does anyone else's child have vision loss?
« Reply #3 on: May 13th, 2008, 1:36pm »
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He is being treated with Imitrex acute spray right now we tried Zomig but no results.
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Re: Does anyone else's child have vision loss?
« Reply #4 on: May 14th, 2008, 6:50pm »
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Have you tried oxygen with your son?  I think it's wonderful that you were able to find a doctor.  Would you mind sharing who his treating physician is?  I think there is a list on the OUCH site (or this site) where they try to list doctors and where they are located.
 
LeLimey (Helen) has a little boy who has clusters.  She's been a bit under the weather lately, so she hasn't felt like posting.
 
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