September 29, 2009

Well, an Update on Ayme -

Yea, I know, it's been a while. We were able to get the Authorization for Lyrica to go through for Ayme. It was helping at first with the nerve pain. She was taking 100mg, twice a day, as prescribed. She did this for 3 months. Then her legs and feet started swelling. A bad side effect of the Lyrica. Her feet would swell up and turn red, and burn. Imagine a tomato in a pot of boiling water. The Skin on the Tomato SPLITS OPEN. Well, that is what Ayme's feet were feeling like, and her legs were hurting bad from the knees down. So, she dropped the Lyrica down to 100mg. once a day. She was at that dose for a month. Still no relief. So, she stopped taking it. The tramadol (Ultram) that she was prescribed (50mg. four times a day as needed) stopped helping altogether with alleviating the pain. So, she is no longer taking that. She is only taking tizanidine (Zanaflex) - a muscle relaxer (found to be helpful to those with Fibromyalgia). It seems to help with the muscle aches and spasms that she has. It does make her tired, though.

I took Ayme to see the Pediatric Neurologist at DeVos Children's Hopsital today at 5:30pm. They are referring her to a Pediatric Immunologist (Immune Specialist) at DeVos Children's Hospital. I will find out more probably tomorrow or the next 2-3 days ....It's so frustrating that no one knows why she has the burning nerve pain that she does, and that no one knows why her back hurts her....It's so irriataing - especially knowing that if it were a DOCTOR's OWN CHILD, they would NOT be letting their OWN child suffer with PAIN. So, we are waiting for the referral.

I am home schooling her, as this is working much better for her. She is currently doing Alpha Omega - 12the grade Trigonometry, 11th grade Language Arts, 11th grade Chemistry, and 11th grade History. She is actually doing very well. She is proud to be homeschooling. She is actually learning new things instead of Reviewing old stuff that she already knows. So this is challenging her, and I think it is wonderful! She looks forward to "Homeschool" everyday! I love this! I am proud as a parent because of this choice we have made together as a family.

Since the last post, Ayme was referred to Mary Free Bed Pain Program at Mary Free Bed Hospital in Grand Rapids. I took her there for a 2 - 1/2 hour evaluation. She was seen by Dr. Hudson, and Physical Therapist, and a Psychologist. They all work as a TEAM. They all agree that she has a Chronic Pain Condition. They all believe that the program at Mary Free Bed can help her. Thing is that AFTER our Health Insurance picks up their portion of the $8000, it is still going to cost us $849 out of our funds. They will make a payment plan, with a 20% down payment.... I do not have that much extra money free right now. I told them that I will have to check back with them in November. Not only that, I would have to get out of work a few hours earlier 3 days a week in order to take her there -- so that would make my paychecks even smaller, plus I'd have to cover expenses for gas there and back as well... (Not cool....as hours have been cut back at work for everyone there...)

Oh, I must mention that Ayme did have a SLEEP STUDY done. Get this, out of 7 hours, she only slept 1.8 hours.... not even a whole 2 hours. Our insurance was billed $2,200, but we still have to pay $300 that insurance did not cover. And I got the Sleep Study Results back -- the Sleep Physician said he would RECONSIDER another Sleep Study - AFTER Ayme had been treated for the Insomnia. - Well, the Doctor (the mean one who ordered the Sleep Study) had her Assistant call me and said they wanted to schedule another Sleep Study! I said "No Way am I going to pay for another study when they haven't even treated the Insomnia since the first sleep study...." ----Man, I am so ticked off! Ayme's been telling all of these doctors she has seen for the last 5 years that she's had trouble falling asleep, staying asleep, etc. They have it noted in her charts in black and white for the last 5 years! How uncaring must they be?

And, this same Doctor (the Mean One, that ordered the Sleep Study) also had Ayme re-evaluated for ADD/ADHD at Pine Rest..... well, I got those results back, too. Ayme is NOT crazy. She does have a Nerve/Pain Problem. So, there! Ha! Ha! to that Mean Doctor....

If you'd like to write me, please do! I would be happy to write back. Thanks so much for keeping Ayme in your prayers. Hopefully, we can find out something more soon.

-Janice
jevisger@yahoo.com