Rebecca is a smart, sweet, precious, "breath of fresh air" 12-year-old to everyone that meets her. She enjoys dance, art and soccer, and she loves school. She has always had straight A's, and last year she won the Best News Host Award for her school's morning announcements. Over the last year, all of the activities that she loves, she has not been able to enjoy, and some of those qualities that have always shined through about her have become less noticed. It is heart-wrenching that I now see my precious girl in constant pain and unable to get out of bed most days.
When Rebecca was five, she had her first episode of continuous vomiting that lasted for about 24 hours. This continued once per week for several months. She had light, sound, smell and motion sensitivities, as well. We talked to her pediatrician who suggested that we see a gastroenterologist. After many tests including a colonoscopy at the age of six, everything came back normal.
This is Rebecca at six- her kindergarten year when she first started getting sick.
After more research, it was suggested that Rebecca may be suffering from abdominal migraines. Migraines? But her head does not hurt and she is only showing stomach-related illness. We were sent to a neurologist, which confirmed the diagnosis. Her doctor said that abdominal migraines are fairly rare and that in a couple of years they may lead to full head-pain migraines. Within months, the head pain came. The cycle continued every week for five years.
Rebecca's 5th grade Awards
A year and a half ago, the frequency picked up to roughly four or five days a week. The migraines always hit at about 3:00 p.m., just as she got out of school, so it did not interfere with her school schedule most of the time other than experiencing the "migraine hangover" most days at school. Rebecca had to stop playing soccer, quit dance, stop seeing friends after school, and she could no longer participate in any evening family activities.
Over this past summer, the pattern changed. She started to wake with the migraines at about 4:00 a.m., so she was missing a lot of school. After five months of attending school roughly one day per week, we made the choice to withdraw her from the middle school and start virtual school while we stay home to focus on her health. The virtual school work has not been easy, because the screen bothers her and she has a hard time learning by reading the lessons on the computer.
Rebecca's first day of sixth grade this year, with little sister, Rachel.
For several months now, she never has a break from migraine. She wakes with it and goes to bed with it. Most days she can barely function- unable to play with her three younger siblings that think of her as their little momma. It takes everything she has to go outside for minutes at a time because the light is so blinding. She cannot handle the scent of me cooking, any physical activity, or even talking for more than a few sentences at a time because she gets winded and becomes more sick with increased pain. She is at the point now that she stays at a pain level of between 4 and 9, nearly 24 hours a day. While it is extremely difficult to see Rebecca in constant pain, it is also very hard to see the cognitive effects that the migraines are causing. She cannot focus, she has a hard time reading, and she has a hard time gathering her thoughts and talking about what she is feeling.
Steve and I feel like we are at the point where we have exhausted all efforts to try to help her. She has seen several neurologists in Florida, endured many tests, MRI's, blood workups, allergy screenings- all coming back normal. She has tried numerous drugs- both preventative and abortive therapies; we have been going to acupuncture for five years, as well. She sometimes has one good day after acupuncture. We have tried chiropractic care, elimination diets including sugar-free, grain-free, dairy and egg-free. She has also had eye exams which were normal, and she had braces early, from ages 7 to 8 to see if that could help the head pain.
Recently, after a five day 24/7 pain cycle where Rebecca was growing weak and more exhausted, I took her to an anesthesia pain doctor where she was given diagnostic nerve block injections in her temporal area, which is her pain point. She had a remarkable outcome to the injections. Three days of relief. I know that does not sound like a lot, but this is exactly what we needed to prove that the nerves in this area have a role in causing her migraines.
We are in contact with a great doctor, Dr. Ivica Ducic at Georgetown University Hospital that treats patients that suffer from chronic migraine with nerve decompression surgery. This surgery alleviates the pressure that is being placed on the nerves. Dr. Ducic has performed this surgery over 1,000 times and has given many patients full recovery.
The surgery is an out-patient procedure, and takes between 1- 1 1/2 hours. There is no cutting into the skull or the brain. They place a small incision in the hair line near her ear, on each side, to decompress the nerves in the area. We have talked to Rebecca extensively about the procedure and she wants to have it so she can get her life back. How much longer can we wait it out to see if she will get better? We are looking forward to the day that Rebecca can get back to being a kid again so she can dance, play outside, go back to school, play with siblings and friends, and have fun again.
We appreciate each and every person that has reached out to us with suggestions over the years, and been here to support us as we fight to find the proper treatment for Rebecca.
This year I have been home with the kids full-time, while also going to school full-time, finishing my degree in early childhood education. I am so happy that I have been here for Rebecca to help her through this time in her life that has been so difficult.
We are in the insurance processing phase right now, knowing that most of the time the surgery is denied due to it being considered investigational. It took many years to approve Botox injections for migraines, and this procedure is often the procedure performed after Botox patients find temporary relief, as Rebecca did with her injections.
We appreciate you taking the time to read about Rebecca and her struggles with chronic daily migraines. We are accepting all well-wishes and prayers that she can have the opportunity to have the surgery with great success. While the surgery will range between $8,000- $11,000, we are currently looking at travel arrangements so that Steve and I can both accompany Rebecca up to DC and stay for a couple of days through the surgery and post-surgery check-ups. Please feel free to contact me to send Rebecca well wishes, as a lot of the time right now she feels so isolated from friends and family.
Vicki, Steve and family
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