November 9, 2009

Just letting you all know that we are still waiting...

It turns out that when we went to see the Pediatric Neurologist at DeVos Children's Hospital, he referred us back to the Pediatric Neurosurgeon's Office at DeVos Children's Hospital, but with Dr. Skarli, the other Pediatric Neurosurgeon in the same office.

So, I took my daughter, Ayme, for the appointment. Well, the Secretary came out and talked to Ayme and I. She said, "Why are you seeing Dr. Skarli, you have already seen Dr. Foody here? I think you should stick with Dr. Foody." I said, "The Pediatric Neurologist referred us back here..."

So, Ayme and I told her everything... how we ended up here... we started here, and now we are right back here. I told her that The Ped Neurologist, Dr. DeRoos also referred Ayme to see a Pediatric Immunologist at DeVos Children's Hospital as well, but they can't get Ayme in for an Appointment until February 2010.

Ayme and I left with her: New Tests Results -- the Sleep Study (Which Ayme only slept 1.8 hours -out of 7 hours total), the Evaluation from Mary Free Bed Pain Program (which was very thorough... unfortunately, I do not have an extra $1, 000 just laying around --our part AFTER the insurance picks up the rest). We also left the Psych Evaluation -- yes, Ayme does have a Pain Problem, and it is not "all in her head..." Also, we left tons of color photos of those AWFUL blotches (BIG blotches) - pink and red, with no raised borders on them and they don't itch, - and I left notes on the backs of the photos describing that the blotches come and go, and that where they are red, the skin TEMPERATURE is HOT to the touch, and where the skin is normal color, the skin is much cooler... And where the skin is BLUISH, the skin is COLD to the touch. Very Drastic Temperature Changes...

We described Again: the Burning, Shooting, Stabbing, Gouging Nerve Pain.

She promised that she would have Dr. Foody look over all of this information and these new test results.... and that she would get back with us to schedule an appointment when we were there a month ago.... I've called twice and sent a couple e-mails stating that my Daughter needs to be seen for a follow-up appointment...

Today I get a phone call from their office at my work. It is a different person. This lady is not the one that Ayme and I seen 3 or 4 weeks ago. This lady asks "Why does Ayme need to be seen? Is it for the same problem that she was seen last time for?" I said "Yes. I left new tests results and photos for Dr. Foody to look over and records for him to read through... new information that he did NOT have when we seen him in March 2009... Didn't he look through any of the information that I left for him?" She said, " Dr. Foody doesn't treat skin disorders...." and she went on and on.... I said, "I know. He is a Neurosurgeon. My daughter has a Nerve Condition. The skin SIGNS are from a Nerve Problem. I'm so frustrated because no one is hearing us..."

And she got all rude with me on the phone........ I finally said, "We just want a referral to University of Michigan in Ann Arbor, please." She said, " I'll talk with Dr. Foody and I'll call you back at your work."

What is it going to take? If this was their child, they would be getting something done...
I am so frustrated. I just want to crawl under a rock.....

Any thoughts or ideas, please write me. Thanks for listening.

-Janice
jevisger@yahoo.com