Wednesday, January 29, 2014

Rough Week

This past weekend Noelle started to have vision issues. She had blurred vision, floaters and even double vision. We elected to bypass the emergency room and go to her opthamologist on Monday. Noelle has swollen and hemoraging on her optic nerves. One eye is worse than the other, but both are affected. She saw a neurologist and had an MRI on Monday. She has a spinal tap tomorrow at 10:30. They need to figure out what is causing the pressure, then relieve it. VERY scary!!

Meanwhile we have been attending our other appointments. The school appointment went well. We liked the woman that will be the teacher she reports to. She still needs to feel well enough to complete things, but at least her progress will not start over on the 30th.

We drove to Ames on Tuesday. We loved the immunologist. The information we received was mixed. Noelle's immune deficiency is not significant enough to treat. He does want to follow her and re-test her. He was very in tune to Noelle and felt for our situation. I think we were hoping treating this deficiency would help Noelle, so it is yet another piece that is not completing the puzzle. We also had a great lunch with Jake while we were in Ames.

Today we had an appointment with a pain doctor. I did not have high expectations because of Noelle's widespread pain. This doctor was a complete ass! She was not empathetic at all. She told us that Noelle was going to have to live with pain and she would need to learn to deal with it. She suggested that she exercise more. We left before one of us punched her.

We are convinced that there is healing for Noelle. We have not come close to exploring all the options out there for healing Lyme and its co-infections. Do not attempt to rob us of our hope!! Many of these days can be dark. I cannot believe that a doctor who is supposed to give life would say such unsympathetic and potentially damaging things to a 17 year old.

Wow. Sorry. I have to vent. Back to the issues at hand. Noelle is in terrific body and head pain. Especially with the pressure in her head. The vision issues are very annoying and alarming. The spinal tap is scary.

We need direction. We have all these physical issues and no clear direction where to go for healing. I currently have three ideas. We have the second opinion scheduled in St. Paul the beginning of March. I know this doctor does some things differently than our previous LLMD. But differently enough I do not know. There is the medical center in Arizona, which has the advantage of doing many different treatments in one place. Then Dr. Horowitz, in New York State, is a Lyme doctor who has recently written an amazing book describing every issue Noelle has been dealing with. We could see him. I don't know how that would look as far as treatment and follow up. So I guess I need to be fact-finding. But I am not sure how that looks. Very hard when all the research is internet and long distance based. Their are pros and cons for everything!

Our trip to Mexico has been cancelled. Noelle cannot travel due to the unexplained pressure in her head. Scott says he would rather go snow goose hunting instead:/ Yes, he is weird.

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