"Suffering the Slings and Arrows of Outrageous Fortune"

An Update

Been awhile since I did an Em update, so I will take a few minutes to do so.

Right now she is pretty miserable, with what I assume is the flu. She had been coughing and had a sore throat, but absolutely no fever. She seemed to be getting better but then, last night, she started carrying fever – 101.8 and her throat was terribly sore. This morning her fever is down but the stomach part of the bug is kicking in. The fever and ‘stuff’ is wreaking havoc with her POTS symptoms. She just about fainted on me this morning, poor kiddo – she was staggering to the living room but I think she was pretty much out of it on her feet. She gave me a bit of a scare but settled down pretty quickly. She is sleeping now, so hopefully she will feel better when she wakes up. I am holding off making a dr appt for her but will keep a close eye on her to make sure she doesn’t get dehydrated or starts heading toward pneumonia. This bug cannot pass quickly enough, as far as I am concerned – and I am devoutly praying that I don’t get it. I figure some devout handwashing won’t hurt either!

We were supposed to see the opthamologist this morning – the original appointment on the 16th had to be rescheduled on the doctor’s end. Unfortunately,there was no way she was going to make it this morning. So, we rescheduled AGAIN for the 9th. I really hope nothing happens to force us to reschedule again, because there are some issues I really want to talk to him about. No big emergency but I am impatient to get some answers. (Will go into more details in another post soon.)

Her headaches are still a problem, although the increased dose of Diamox seems to be helping. Most days her headache stays around a 3 or 4 out of 10, which isn’t great but is a whole lot better than an 8 out of 10. The baking soda capsules could be helping, perhaps. Or the Diamox headaches (yes, the very medication to relieve the headache, causes headaches) might be leveling off as she adjusts to this dose. Or the increased dose is doing the job. Who knows, but it does seem to be slowly getting better. I am wondering if she needs one more bump in dosage at night – maybe 250 mgs. I am pretty sure Brian wouldn’t mind if we play with the dose a bit, so we might just try that for a couple nights and see what happens. So many things to consider and no where to really get solid answers.

Em is supposed to start PT on her neck tomorrow and I am hoping, that since it is just an eval, she might feel well enough to go. Again, I don’t believe her trigger points or muscle spasms in her neck are causing the headache, but working on them might bring her some relief otherwise. Oh, and she finally got the xray of her neck that was ordered, so we will see what that says. Hopefully, Chuck will be able to pull it up at our appointment tomorrow.

I just heard back from the Allergist this morning, regarding the allergy blood work we had done. It was all negative so it really looks like her symptoms are not caused by allergies. One more piece of evidence that points to mast cell disease, but we will have to wait and see. Just got the 24 hour urine redone on Monday, so will have to wait on those results.

So, basically more of the same with a few small steps of progress here and there.

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