Just wanted to check in and record our progress or should I say lack of!!!

Saw Orthopedics which was referred by Pediatrician, what a waste of time!! Dr. literally walked in and without even looking at dd12 decided it wasn't an Orthopedic issue!!! Ugh! We have been going round and round with Pediatrician since her insurance requires everything to go through her.

We are seeing a new Geneticist. The IFM doctor we saw was only able to go forward if we were able to pay around $3500 for testing that her insurance would not cover and she was not willing to work with our Pediatrician. So Dr. Shah, the Geneticist, is willing to send everything through Pediatrician so insurance will cover very expensive testing. So, now back to fighting with Pediatrician. She made a decision over a year ago that she thought this was all in dd12s mind and that nothing was medically wrong with her so getting her to do any testing or referrals is like pulling teeth!!

She has just agreed to write referral to Pain Management so waiting to hear from them now. We go in to see Pediatrician tomorrow afternoon and try to convince her to order genetic testing.

Dd12's symptoms are worse if anything. She has had a few weeks in the last several months where her pain was more of a 4-5 than the normal 10 for her. The last 2 weeks has been really bad. She is very dizzy, light-headed, fatigued, extreme pain in legs, ankles, and wrists. She has dropped 8-9 pounds in last 30 days and barely gets out of bed most days. Her heart rate is high, normally around 135-140 and the headaches and neck-shoulder pain are non stop.

I am getting very worn down and most days bounce from anger to sadness when see cant see me! I just want her to feel better. I just want to know what is causing this and that someone is trying to make her feel better. Instead, we get shuffled from one doctor to the next and get no closer to answers. The few doctors that think they can help require testing that is crazy expensive and we are left to fight with insurance!!!!!!!!!!!!!!!!!!!! UGH!!!!

Ok sorry for the rant just needed to get it off my chest.