Last Thursday we went and met with the Lymes doctor again. I found myself having a million questions and starting to become skeptical of it all. I really needed an opportunity to get all of these questions answered to help me feel more confident in a treatment plan. Her doctor was amazingly patient trying to help me understand and giving me very clear answers. Some of my questions ranged from: if we can’t get ride of the arthritis, then why are we treating the Lymes and if we didn’t treat the Lymes what would that look like for her. We discussed effects of long term antibiotics and the combination of medications she is currently on. We discussed why she didn’t have any herxing. We talked about other symptoms of Lymes that we can clearly see in Sadie and how treatment will help those. We discussed the test results and if she could have positive bands, but not really carry Lymes. All of this and much more was answered and I feel very confident in what she told me. She would like her to re-do the blood work and add one more test to confirm. We found out just this weekend that our insurance is only covering this at 50% and that is causing us a little tension as all of this is adding up really quickly. We are seeing what (if anything) we can do to get them covered as an in-network provider which would change this. Dr. N (Lyme doc) did give Sadie some more supplements for liver function, which helps me ease my mind a little, but would like to retest her liver function soon as the last testing it was high. I am waiting for a call from her Rheumatologist as I have requested that I have a meeting with her to discuss all this. I will probably do the same with her pediatrician to make sure that we have as many eyes watching all of this as possible.
Sadie also had an MRI of her right ankle on Thursday morning. The actual MRI takes about 30-40 minutes; she actually started to fall asleep during the first half and then they came in to inject the dye; this woke her up and then she was in obvious discomfort. I could not hear what she was saying, nor could she look at me to communicate (she has head phones on and I have ear plugs in because the machine is very loud). At the point she realized there was nothing I could do but run her shoulder, big, heavy tear drops came down her face and all I could do was wipe them away for her. When it was over she said her ankle was hurting a lot from having to keep it in the same position.
This weekend we had a nice time, Sadie was able to ride her bike for about and hour, but by the evening she needed some pain medication to help her get to sleep (too much pain).
I called today to see if we could get her into the surgeon sooner, but at this point we can’t. Dr. W (Children’s) may have some other way of getting her in sooner which I will discuss with her and get a copy of the MRI results too.
This has you updated to now. Next on the calendar for medical stuff are the labs for the Lymes (which will probably be next week) and Remicade on the 19th. I am hoping to talk to Dr. W within the next few days and this may prompt at least a liver function test and hopefully some further answers on the path of treatment for everything.
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