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In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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I know exactly how you felt, we are at a teaching hospital as well some of the res. or fellows are good some need a lesson in compassion. There was one particular appointment that they made Sarah cry, when they left the rm. she said they don't beleive me. Her bloodwk last December did not show she had the disease, some of the titres were only slightly related. It was a Rheum Psyciatrist who diagnosed Sarah as she was having small little hallucinations and that trigger the Dr. to react so quickly. I don't know if you read my post about my Sarah but we have been through quit the summer and I know how you feel when it comes to my child I am a mama bear.
The Doctors were very surprises that Sarah got so sick and they also apologised to us for not making the right call.(that was the second admission and they thought her problems were due to stroke not the lupus that was affecting her brain. Let me tell you she is being followed with kid gloves now.
My advice to you is don't give up, and not all young Dr.s in training know it all I have had to speak to the senior to make corrections many times. Be informed, and research, listen to the others that are experienced with this disease. I didn't didn't even know what antiphospholipid antibodies till I read it here. I asked the Rheumy did she have this, as she had a clott to the brain and he said yes that was 4 mths after.
Hopefully you get your answers, hugs to you and your son
Sharon mom to a 17 year old daughter that has CNS Lupus,stroke,sle,APS
Hi Hippi. I'm so sorry that you and Josh are going through such a tough time, but it's great that you emailed the doc in New York and got a reply! I sure hope the pred taper goes okay. I'm sending you lots of positive energy and ((Hugs)).
Hi Hippi, I wish I could say all the right things to make you feel better and to "fix" Josh but I just don't have the words.I know it's hard enough to be sick yourself but to have your child going thru this and than to have such a terrible experience. I imagine it must have been very hard not to just wring his scrawny neck! Than after driving 3 hours! good grief! I'm glad you at least got one doctor there that is willing to listen. It's terrible that Josh can't tolerate the predisone and it's the only thing that helps. That book sounds like somthing that will help you understand and maybe give you a little sense of empowerment.
I actually looked up on that site about rate your doctor. a few months ago I put my first rheumy on there and said what an idiot he was. and how rude he was. I looked at it again today and two other people had added their remarks. What they had to say about him was at least as bad as anything I wrote. It really made me feel better. Part of me was thinking it was my fault and I was stupid. As much money as these people make you'd think they could at least smile once and awhile. Plus all the money they have spent in school you'd think they would want to come out knowing one or two things.
anyway hang in there. this is not your fault. You are doing the very best you can for your son. Try to take some time for yourself too.