11/10 Ped. Neuro appt and 11/29 referral

We finally got in to see the ped neuro, over a month after she was dx'd with CRPS by the ER doc and her primary doc.

He wasn't as helpful as we had  hoped.  He checked her out, checked her reflexes, and said that since she doesn't have burning pain every time someone touches her, that there is no way she has CRPS.  He things she has Erythromelalgia.  I don't think she has that.  I truly believe she has CRPS, and possibly POTS or EDS.

He referred her to pediatric rheumatologist Keim, who he thinks will be retiring soon.  We needed to wait for him to get the referral to him, and then his office will call with an appointment.


On 11/14 I called the rheum office and they told me it would be about a week once they received the referral before they can authorize the appointment.

I called the rheum office on 11/15 morning as I still hadn't heard anything from them. Apparently they never received the referral!! So I made some calls and the neuro office said all the information is in the EPIC system and the rheum should have had all the info. I found out this rheum REQUIRES the referral and medical notes to be on PAPER, and he refuses to look at anything electronically. If that's the case they should let those people who are referring to do it this way. Now we've waited over 2 weeks, and need to wait longer for the rheum to authorize the appointment.

Meanwhile she is in pain, having migraines, along with dizziness and breathing issues, and no doctor will treat her with anything!!

On 11/27 I called the Rheum again.  They STILL hadn't gotten all the paperwork!  Mama bear took over and I yelled at them.  Told them this was unacceptable and they needed to get their acts together.  This was later in the afternoon.  On 11/29 I called early in the morning.  They still hadn't gotten anything!  I was fuming.  I guess the squeaky wheel gets the oil.  About an hour later, I got a call from the ped rheum office.  She said the new ped rheum looked over what they had, and he agreed to take her.  The one our ped neuro referred us to is retiring, so he is taking over.  They are working on the case together..  Appointment is scheduled for 8 am on 12/6 and is scheduled to last at least 2 hours.  She needs to drink a lot of water so it will be easier to take blood.