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
Tuesday, September 29, 2009
Thursday, May 7, 2009
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.
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.
Wednesday, April 29, 2009
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
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
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