WOW the Appointments...

Just Keep Coming!

As promised I have a small update from the phone calls that were made today.

First call: Kristin, Zach's dietitian. She was able to speak with Zach's GI about his case. Dr E wants to see Zach back sooner rather then later but wants his allergist to run the allergy testing first. After that is done he wants to see Zach and discuss more biopsies.

Second call: The Allergist. Zach's appointment for testing was April 13th - as soon as I said the testing depending on the GI doing more of his own testing Zach's appointment quickly got moved to this coming Tuesday January 12th. The only down side is that this will be a skin prick test....the only positives that have come from that test are Milk and Soy. If the test does not show more positives we will go back the next week for another patch test. This is BAD BAD BAD for Zachary...the last patch test brought a lot of shut downs and no movement for 72 hours.

Third call: The Insurance Company. I need to find out if a doctor from out of state is on our plan. His website claims he is. When I called the first time they couldn't find him....

Fourth call: Medical Neurogenetics (this is the out of state doctor I referred to) - Dr Shoffner's office to find out his tax id.

Fifth call: Insurance Company -- good thing I called because with our luck he is NOT on our plan (does except the same insurance company just not our plan). However, I found out that our pediatrician can call and ask for a "Gap Exception" this will allow us to still see the doctor we need to see and only pay our in network payments. PLEASE if anyone is listening let this happen as I have no clue how we will pay without this miracle.

Sixth call: The Pediatrician. Of course this call was to make sure she will call and ask for the "Gap Exception" too bad she wasn't in her office so I'm waiting on a call back from her this afternoon. I have no doubt in my mind she will be doing this for us as she believes this is the next step to take in finding answers.

FYI Dr Shoffner was referred to me by a woman named Emmy (I posted about her a while back) She really motivated me to take this to another level. Here is one of the links she passed onto me http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042177/k.D869/fontfont.htm
This is not to say this is what Zach has as we do not know. His geneticist has mentioned testing for it in the past but didn't because it was right after his g-tube was placed and wanted to give him a break. During my conversation with Emmy she made me think really hard about this and the right steps to take - Zach would be able to get tested here but Dr Shoffner is the best option - especially hearing Ana's story of being tested 2x once negative results and then again with a fresh biopsy (Dr. Shoffner is one of only 2 in the country that can do this) and that biopsy coming back positive. Ana was 4 when she finally got a diagnosis - Emmy knows exactly what I am going threw not knowing. After speaking with Emmy that day and seeing the possible symptom list and noting that he has more then 3 systems involved (he actually as 5 involved). I think it is high time they test and either confirm or rule out a mito disorder. I'm just hoping we will find away this all works out...if our insurance won't grant us the "Gap Exception" this will be a very long hard journey on us as far as having the money for all of the appointments.

I'm off to start the paperwork that needs to be done in order to do what we have to do for answers. Momma Bear is ready for this!