Do you have to stay with that PCP??
Can you search around for another that is more open to helping?

Have they specifically checked for extra cervical ribs? even small or partial can cause trouble.
Sometimes they are missed or not actually checked for by drs or techs..or imaging misses them..

[Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head.]

perhaps upper cervical chiropractic might help- sometimes during birth a baby can sustain a slight neck/shoulder injury to the area-
http://orthoinfo.aaos.org/topic.cfm?topic=a00077
www.upcspine.com
SIGN / SYMPTOM CHECKLIST-
http://www.upcspine.com/self.htm
If possible you can always go on your own for an eval of her C1 C2.
Many will give cash discount as billing ins is an added cost & time for the office.

We can request a new PCP but that takes roughly 6-8 weeks. Just leads to more waiting for dd.

One doctor she saw did mention and extra rib and had an MRI done but the imaging department said all was normal.

We are considering changing PCP if we do not get any help from Pain Doc or PT. It just adds more time to her waiting with nothing getting done. I am still working with geneticists who is trying to get us a cash price for testing he wants to do. At this point we are prepared to borrow anything we cant not cover ourselves. The geneticists is also having another radiologist/neurologist look over her MRI to see if there is anything that has been missed.

Are you requesting copies of all tests /reports for your own records?
it's just easier to have them in your own file if you decide to go outside Ins on your own..or for other opinions..
Especially with hard to dx cases... often there can errors in the drs records too.
So those might be good to get and review , and correct any misinformation, something vital may have been glossed over or missed completely.

If PCP report says anxiety based sx, that can be a big road block going forward..when others read that.

Update-
Had appointment with Pain Management doctor and once again a huge waste of time. It was obvious that he was in agreement with Pediatrician before he ever saw DD12. He too says there is nothing physically wrong with her and it is all physiological. So that was no help.

We are moving forward with genetic testing and paying the $945 out of our pocket. Hubby and I have talked alot of this situation and while we are unsure if what the pediatrician is saying is correct or not we just do not think enough things have been ruled out to make that decision. I guess I just feel like MRI and xrays do not seem to be enough to determine that there is no underlying cause for this pain that she has endured since she was 6!!!!

So geneticists is speaking with lab today to coordinate Dd's testing. Meanwhile she has first appointment with PT on Monday so I will update again after that meeting.

Has she been evaluated by a mental health professional to see if they think there is an anxiety issue or not?
I might do that before genetic testing.
That would clarify if it is an issue or not.
If not you could wave the results in the other drs faces...

But I wouldn’t go back to any unhelpful drs again unless I had no other option..

Thowell, what kind of genetic screening are you and your husband considering for your daughter?

If it is a narrow screen (looking for genetic differences which are known to be causal of genetic diseases), that could provide helpful information.

I am far less sure about the possible benefits of genome-wide screening. In a genome-wide screen what is done is to look for Single Nucleotide Polymorphisms (SNPs) across the whole genome. It is inevitable that your daughter will have many SNPs because all people, apart from identical twins, are unique in a genetic sense.

The great majority of SNPs are not associated with any known disease. A minority are but, as far as I know, few if any of them have led to improved treatment options for the disease in question.

It might be an idea if you and your husband asked your geneticist searching questions about these points and then decide whether or not a genome-wide genetic screen would help your daughter.

I will ask them Monday when they call me the exact type of testing. I know he mentioned something about Metabolic???? I really am not sure but will post it here when I find out. Thanks for the info.

No not yet. That is the next referral. She will be seeing a pediatric psychiatrist. The geneticists thinks they will want further testing before they rule it mental anyway. He doesn't feel enough has been looked at to rule out other organic causes aside from mental health.

I will say this. She spent Tuesday-Thursday at a week long camp meeting our church has every year. She had a terrific time and gets to see friends from all over the country during this time. However, she was still in constant pain even though she was up and moving most of the day and was the happiest she has been in a while as this is something they look forward to all year. She endured the pain because it was so important to her. There is no reasonable explanation as to why a 12 year old girl should be in constant pain all day no matter what she is doing. So I hope moving forward we get more answers. And yes we will not be going back to the Pain Clinic as that was a waste of time.