I took my daughter Ayme to her appointment with the Pediatric Immunologist/Rheumatologist last week. After a thorough examination he said she has a Severe case of Fibromyalgia, and said he does not see any signs of Autoimmune disorders, Rheumatoid, Lupus, etc. He did say that when her back was injured 5 or 6 years ago, that it DID CAUSE her NERVES to go HAYWIRE! --- Reflex Sympathetic Dystrophy (RSD) without saying "RSD".... go figure.... Her Vitamin D level is extremely low - so he RX'd Vitamin D for 12 weeks, and sent a lab slip for her to go and get it rechecked after the 16 week mark..... said she should get into aquatheraphy for some exercise, etc... He DID say that WALKING would even be too much for her right now. He said it would take 2 to 3 years of therapy to get her so she doesn't hurt so much....Wow! He was very nice. So, I called the family Doctor here in Muskegon, and Ayme has an appointment this coming Thursday for a referral to aquatherapy... and to go over her appoinment with the Immunologist....

November 20, 2009

I took Ayme to our Family Physician on Monday afternoon, well, the Physician Assistant that she has been seeing for the last 5 years.

I filled her in with all of the information - basically that we are right back to where we started at 1 year ago - having to WAIT to get in to see yet another Specialist (Pediatric Rheumatologist/Pediatric Immunologist) at DeVos Children's Hospital -- and we have to wait until February 16, 2010 at 10:30 a.m. for the first available appoinment to see this Specialist. I am calling first thing on Monday morning to see if they will put her on the cancellation list, so they might be able to get her in sooner.

Anyway, Monday, at the appointment, the Physician Assistant was stating that she is wondering if Ayme may have Raynaud's Disease...... ------- because of the Blue, Pink, Red Blotches.....

Well, I KNOW this is NOT what Ayme has!!! I've taken Pathophysiology (study of Diseases) at College and I have an Associate's Degree in Applied Science - and I've taken tons of other Medical Classes, and I even have a HUGE NURSING Encyclopedia with tons of Colored Disease Photographs from different Colleges and Universities! What my Daughter has is NOT Raynaud's Disease!.......

I really think that the Physician Assistant does NOT want to ADMIT that a PATIENT, and her Well-Educated and College Graduate Parent are 99% certain what this Disease may be! I Do NOT know why Physicians have to be so STUBBORN and AFRAID to ADMIT an error or even a chance that a Patient may be Correct on a Diagnosis! If they would just ADMIT that patients may be Correct at times, Do you know how much MONEY could be saved in this country?

The Physicians are a HUGE PART to blame for the Enormous COSTS of the Healthcare and Insurance Industry! I even see this EVERYDAY when I am at work in the Pharmacy. I see Doctors Prescribe a New Brand Name Drug, that actually consists of 2 Generic drugs, yet, they write a prescription for this barely Prescribed Brand Name - and None of the Insurances will cover it, so the patient's Health Insurance Requests a Prior Authorization --- meaning the Patient's Physician has to call the Patient's Health Insurance Company and tell the Insurance Company WHY the PATIENT needs to have this particular BRAND NAME DRUG.....

and then there is the part where they do NOT get the Approval by the patient's health insurance company --- yet the Doctor REFUSES to let the patient know that the Brand Name Drug that they wrote the prescription for was DECLINED by their (patient's) health insurance company, and the physician STILL DOES NOT call in a drug to REPLACE the one they wanted the Patient to have in the first place, so the patient goes WITHOUT either medication at all.....
Or, wait, the Physician gets the Insurance to approve the medication, but the Physician REFUSES to NOTIFY the Patient or the Pharmacy, so the Patient still goes WITHOUT any Medication ---------

Well, I ask: Why Prescribe a MEDICATION for a Condition for the Patient, when in fact you could care less about seeing the patient get well from the condition?
So - the Patient's still are sick, and the Physicians still drag the patient through more and more appointments, so the physicians still RECEIVE payments from the patients for office visit co-pays, and the Physicians still RECEIVE payments from the Health Insurance Companies for "TREATING the PATIENT..." ----

This United States Health Care System has GOT to CHANGE!! The Drug Companies are charging a fortune, the Physicians are charging a fortune, the Health Insurance Companies are charging a Fortune.... and No ONE gets WELL.......
the patient's just go broke in the process of trying to get well and find recovery...

It is so depressing, no wonder we all feel terrible.

I just want my children to be healthy and get well. Is that TOO MUCH to ask?

Any thoughts, please feel free to write to me. Thanks.

-Janice
jevisger@yahoo.com

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

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

Thursday May 7, 2009

The assistant from the not-so nice Neuro-opthamologist's office (where my daughter was seen 1-1/2 weeks ago) called me at the Pharmacy yesterday and informed me that the Health Insurance would not approve the Lyrica for my Daughter, Ayme. She said the insurance wanted her to try "Neurontin" first. I said, "She already tried that. It didn't work. She was on 300mg. - 3 times a day for 2 months. It didn't work. She was also on Celebrex 200mg, twice daily for 2 months. That didn't work. Also, she was on Cymbalta 30 mg, twice daily, and that didn't work either." She said, "I will call the insurance and let them know."

Today she called me this morning and said the insurance approved the Lyrica early this morning for Ayme. "Yeah, " I say. So, I tried to bill the insurance for it and it was still rejecting. Tried this all day. The Pharmacist and the other Tech were going to keep trying to bill it. Most likely, if it doesn't go through today, I will have to call the insurance tomorrow...."
-Keeping Fingers Crossed and Praying that it will go through as "Paid."

Please Keep Ayme in your prayers.

April 13, 2009---

Hey, there! My name is Janice and I live in Muskegon, MI. My daughter who will be 16 years on July 29, 2009 has been in pain for 4 years. It started out as back pain, then the headaches started. Then the headaches got worse. The back pain got more severe as did the headaches. Then all of the other symptoms started. The shooting burning pain up and down the entire spinal cord, the shooting burning pains throughout the arms, legs, and all through the back. The severe neck and head pains. The extreme headeaches and pressure in the head. Loss of sensation to hot and cold in the hands. Dizziness. Difficulty swallowing. Loss of sleep, not being able to sleep. It's been awful trying to get a correct diagnosis. See, 4 years ago, when I first took her to the doctor for back pain, they dismissed it as "Growing Pains." Then as things progressed, it was "Migraines, back pain, and 'your child just doesn't want to go to school.' " Then came the E.R. visits and the medi-center visits. The shots of a very strong schedule II narcotic - Dilaudid, mixed with Zofran to combat any nausea-- then that only helps with the pain for about 4 hours. I'm so tired. The family doctor sent her for a LUMBAR MRI - seeing that her hips were uneven and they thought that was causing the back pain and the headaches. The Lumbar MRI diagnosed: SYRINGOMYELIA. We then went to see a Neurologist. He ordered a Cervical MRI. It showed mild bulging disk at C5-C6. We then were referred to a Physiatrist (MD., medical rehabilitation Specialist) who diagnosed her with FIBROMYALGIA, after 3 other Physicians (MD's and DO's) said "children that young don't get Fibromyalgia..." --- I had been asking them about Fibromyalgia for 2 years at this point..... I then asked that she be referred to a PEDIATRIC NEUROSURGEON at DeVos Children's Hospital in Grand Rapids, MI. He ordered Brain, Cervical, Thoracic, Lumbar whole Spine MRI's all with and without contrast. They had to use Anesthesia because all the MRI's took almost 4 hours and she twitches and can't hold still that long.
--------
April 29, 2009 -

Today we seen the Neuro-opthamologist . My child is so sick "in the head," and needs to apparently "see a "Psychiatrist." - And get this -- in one breath, the Neuro-opthamologist said "you have fibromyalgia, syringomyelia, migraines, depression...." and then in the next breath "even though you have severe pain you can still go to school... kids with cancer go to school......."
My daughter and I did not like this Doctor. She odered a bunch of tests, LP, blood work, thyroid, EEG, etc.... and then she said to my daughter: "You need to go to school. To be around your peers, you do not need to be "home schooled." You need to live a "productive life" with the pain..... but all of the conditions you have are causing the pain...."
--- What a witch!!! My daughter and I wanted to punch her. Live with pain... I said "No one should have to LIVE with PAIN...." And, I'm NOT Sorry about homeschooling my child. I know that there are probably MANY SUCCESSFULL Doctors, dentists, etc, that were Home Schooled, and even continued on to College to become Successful! I just wanted to smack this doctor!

My daughter has a visit with the Pediatric Neurologist at DeVos Children's Hospital on July 7, 2009 --- because that is the soonest date they have available. In the meanwhile, My daughter is in Severe Pain and it is continuing to Interfere with her Activities of Daily Living and Functioning, not to mention she has ADD on top of all of this.

So, I took my daughter to the Family Doctor last Monday April 20, 2009--- I went Armed with photographs of the Big Pink and White Blotches ALL OVER Ayme's legs. I had taken them on April 13, 2009. Funny thing, when you touch the areas that are pink, the skin is extremely HOT to the touch, and the areas where the skin is White/much lighter in color, the Skin is a TOTALLY different Temperature!!! I took my research and Evidence to the family Doctor. She was glad that I brought them. I told her what I thought it was. She said "I am sending your Ayme to a Rheumatologist, because they specialize in these sorts of things - autoimmune..."
They scheduled an appointment for Ayme, but she cannot be seen until June 10.... more waiting..............

I am so SUPER frustrated, I just want to scream. Not to mention that I have an Associate's Degree in Applied Science and I've taken Anatonmy and Physiology I&II, Kinesiology, Pathophysiology, and Biology, General Psychology and Abnormal Psychology.... I guess I apparently don't have ANY Medical knowledge good enough for the Doctors or the School....
They seem to think that of ALL of US that are affected by Chiari and Syringomyelia -- that LIVE it everyday-- that we don't know what we are talking about...

My daughter, Ayme, and I did find a free home school (based on the teaching of Charlotte Mason) that is Approved by The State of Michigan, and The North Central Accreditation. It has all of the Curricula that is required by the State of Michigan for HomeSchooling. So, I guess that is where we are now....

Funny thing is, the school and the doctors have all of her medical history for the last 4 years- and they say they don't understand why she is unable to continue to go to school. And the Family Doctor Office said they think they let "the back pain go too long and that something should've been done about it sooner." When the fact of the matter is that her pain and headaches get so severe. That when she has to take her pain meds (3-4 times daily) that she also has to go and lie down and sleep for hours at a time, because of the pain and the meds making her sleepy. A child in High School can't go and lie down to sleep for 3-4 hours every day while at school. Not to mention with the severe head pain and other severe nerve pain, how difficult it is for her to concentrate on schoolwork. She doesn't even get Restful quality sleep at night because the pain wakes her up. And almost 16 year old Ayme is having to deal with the Pain, Headaches, etc. of this dreadful progressive Disease.

I wish there were Chiari and Syringomyelia Specialists here in Michigan-- instead of being all the way in Colorado and New York.

Anyway, that's my daughter's story for the last 4 years. I would very much like to be able to talk with someone who may being having some of these challenges...

Looking forward to hearing from you soon. Thanks for listening.
Janice Visger
jevisger@yahoo.com