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Topic: Thank you all. . . (Read 1270 times) |
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tenacious_one
New Board Newbie
I love YaBB 1G - SP1!
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Thank you all. . .
« on: Jun 13th, 2005, 7:04pm » |
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Dear Parents of CH children,
I want to thank you all for sharing so much. Since I found this site I have had so much more comfort then ANY visit we have had to the docotrs office that usually left us feeling more confused with less hope then before the appointment.
We moved to the area that we now live in 2 years ago. We left behind the only home our kids have known since they started school. No tto mention the only dictir that they ever know.
It has been a struggle to find a family doctor that we are comfortable with. We thought we found it in the doctor that diagnoised Tia with CH. . . and she now refuses to treat her until we see the Ped's neuro! The reason I got was, she CAN'T do any prescribling for her until she sees a neurologist!! She wouldn't even give us 02! I don't understand.
Tonight when my husband comes home from work we are taking her to the ER along with all the information we have so far gathered on Clusters. Wish us luck!
Tia is now tying the Energy Drink approach. So far she hasn't been aware of any changes. Will it take a while for her to notice if it works?
The other thing I am worried about with her is that she seems depressed. I do what I can to cheer her up. If she isn't imvolved in some activity she looks like she is just "haning on" until the next attack. I have called the Peds Neurologist office to find out if there is any cancelations, and I will do that every morning and each evenig before they close. When there is an opening, want then to think of us first!!
In the mean time I am reading anything I acn on the condition. We go to the Chiropractor tomorrow. He has been help for my other daughter who suffers migraines. He was up front with us and told us that he has only 3 other patients (all men) and he wasn't able to offer very much to two of them and the other guy was "kinda" helped with his treatments.
I didn't let Tia hear any of this. Because if she goes on thinking it won't help, I am afraid that it won't!! (make sense?)
Will, I am way off track! I was just going to thank all you wonderful people for being here and I am dumping again. Thank you! ALL! this place is very comforting to me. Just knowing that it is here makes me feel better!
Love,
Tonia
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jokrs2
New Board Old Timer
Eventually He will make us pain free!
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Posts: 480
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Re: Thank you all. . .
« Reply #1 on: Jun 13th, 2005, 7:45pm » |
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Hey Tonia. In my opinion if the energy drink was going to be effective it would have been on the first try. Just between us parents...we will do almost anything to help our kids, so check around alot in the medications & therapies area as there are some alternative medications out there like "kudzu etc." that have minimal to no side effects. Hopefully they can get you the oxygen soon. It was once recommended to me to go to the local fire station and tell them your situation and just maybe they'll let your daughter visit on occasion for some oxygen. Praying for you. Joe in Seattle.
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
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Re: Thank you all. . .
« Reply #2 on: Jun 13th, 2005, 8:38pm » |
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Sorry to say this but in my honest opinion .if the doctor diagnosed her then he/she is being extremely unethical by witholding treatment.
I understand witholding some of the meds but not OXYGEN
Go give em hell for that!!!!!
I also was thinking about the energy dirnks that she should not use them until a HA comes on...much like the use of caffiene, wwe can habituate and then the effects are not evident.
Try melatonin for sleep!!!!!
Ice and neck rubs 
As far as depression goes, unfortunately it is very common with such debilitating pain yet once you guys start getting a hold on it even with just information then you bith will begin to feel better.
I still get "hit" everyday yet I am no longer riddled with anxiety nor am I depressed because I have learned how to cope.
She will be ok & so will you!
Hugs,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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