That is probably a good thing considering we are ready to make a concerted push to deal with the plethora of conditions Em is living with, but it is a bit of a pain to juggle the schedule and fit all of the appointments in.
First of all, we have a follow up with neurology today and an appointment with the ped on Wednesday to discuss Em’s severe vitamin D deficiency. [If he poo-poos me about the seriousness of her test results, I cannot be responsible for my actions – I just may snap!]
Dr. Neilson referred us to GI and to allergy/immunology for a mast cell evaluation. I made both appointments last week, but had a nagging suspicion that I needed to check on at least the allergy appointment. The biggest red flag for me was being told by the scheduler that Em had to go off all her antihistamines days before the appointment but the scheduler assured me all was well with the scheduling of this appointment.
She was wrong, of course, and it is a very good thing I got suspicious. I got a hold of the nurse today and she said Em should stay on the antihistamines if we are concerned about how she will do with out them. (Which we definitely are! I cannot imagine her being even a few days without them, especially since she is having a bad spell right now even with them. So, that was a huge relief to hear!) Then she confirmed my suspicion that we had been scheduled as a regular allergy consult, not with the mast cell expert. So, she got me back to scheduling, after running interference for me and letting them know what I needed to have done. This was a little complicated because we had the allergy and GI appointments scheduled for the same day. After a little hemming and hawing, we got them both rescheduled for October 26. Then, it occurred to me to ask about the GI appointment – it was supposed to be through the motility clinic.
Well, it was wrong too. So, that one is still up in the air – I am waiting for a call back to actually schedule it. The lady in scheduling was very nice and helpful, but it is still frustrating when it goes like this!
I may yet try to move the appointment with Dr. Abonia forward – they could have got us in this Friday (!!!), but at the time we were still trying to schedule both appointments together and that wouldn’t have worked. Now that that isn’t going to happen, I don’t see any point in waiting that long to see him.
So, the moral of the story is: Don’t assume the schedulers know everything they need to know and make sure you pin someone down to get the answers you need. And, for suspected mast cell disease, you do not need to go off antihistamines before you see the doctor! Don’t listen to anyone who says you do!