Well, we had a horrible appointment today – truly a ‘when you hear hoofbeats, look for a horse and not a zebra’ experience. The neurologist was not at all receptive to the theory. Pretty hostile, in fact.
She says Em has migraines, plain and simple (she is the only one who believes this so far, no one else we have seen does). She thinks the pain medication is making it worse so she wants to take her off the only pain meds she is on, which is Tylenol and Aleve. The headache was present long before she ever took medication and it is constant so I just don’t see it is a rebound headache. I just don’t see how she can claim it is caused by the meds. She is upping the amitriptyline to 62 mgs even though the pain clinic said they only wanted to go up to 40 mgs. Increasing dairy intake when my daughter is lactose intolerant. No caffeine. Get up and exercise even though the tachycardia makes her faint. And so on. Very little of it made sense at all, honestly. Seemed like a ‘one size fits all’ protocol.
She ignored everything we said and, frankly, made up things to fit her preconceived notion of what the problem is. I feel like she was going to see migraines no matter what I said. She was very dismissive of this “theory” [you have to say it in a condescending tone] because she has such a successful migraine protocol, tried and true, to offer us. I am sure it is successful for kids with migraines but she dismissed the concept of an EDS patient needing customized care entirely.
At one point the doctor made the statement that all she could do was give us her treatment recommendations but it was up to us to follow it. I think she figured out that there is little chance we were going to be compliant. As far as she is concerned, it will take a good 6 months to figure out Emily’s headaches. It will be rough, but we have to do it. Sigh. She won’t come out of her box long enough to see the zebra standing in front of her. All she sees is a horse.
I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He orginally said not to allow anyone change Em’s medications so we will see what he has to say.
Needless to say I am extremely frustrated. Any suggestions?