Wow! It sure has been a while since I have posted! I went back to work in January and my daughter went back to school (woo-hoo)! I can’t believe it’s already April but life happens. Work keeps me very busy and my daughter still takes some coaxing to get up and going in the morning and to take her long list of medicine and supplements. I’m so proud of her because, while she does complain, she still just does it and she has been doing better. She even won a scholastic award for Social Studies! We just came back from vacation in Lake Tahoe and she was able to get up on the lift (with lots of coaxing) and go down one run on her snowboard! I find both of these achievements to be huge victories!!
Another thing keeping me busy is fundraising. I contacted LymeLight and I am now collaborating with them to raise money. My twin sister and I are running a marathon on May 28, 2017and collecting donations that will go straight to raising funds for families who cannot afford treatment as well as to Lyme Disease awareness. It will also bring awareness to PANDAS indirectly because it is part of our story. I will be handing out brochures to some businesses but I’m also asking individuals to donate what they can (even $5.00). Below is the text of my daughter’s story in a nutshell and I will also attach it in a file. This way, if anybody is willing to go above and beyond and knows of a business that will support the cause, you can print the story and post it at the business site.
Click here for the file: S fundraiser lyme pandas story
Thanks in advance to everyone giving their time and generosity to read this and to donate!
Please take a few minutes to read this story as it might help you or a loved one from months or even years of pain and suffering.
My daughter was a happy, healthy 9-year-old in the summer of 2015. She made the junior lifeguard team and spent the season swimming and being active all day. Our family camped and hiked all summer long in and around Santa Clarita and Central California. My daughter even had the chance to ride her favorite horse in the Quigley Canyon Open Space on several occasions.
School started up again in August and my daughter was excited to return to see her friends and discover the identity of her 4th-grade teacher. She was a shy but good student and she loved school.
In early September of 2015, everything changed. My daughter had mild flu-like symptoms then started to complain about her knee hurting and feeling twisted to the point that she limped. As time went on, pain migrated around every joint in her body from her toes to her jaw. At times it hurt so badly that she screamed and cried uncontrollably. She also felt weak, fatigued, and had a range of other symptoms such as shooting/stinging pain around her body, headaches, dizziness, stomach aches, and periods of feeling like she could not breathe. The symptoms interfered with school and play. Initially her pediatrician told us it was likely growing pains or maybe psychological but the symptoms continued so he soon ordered blood work. That was the first sign of something wrong. Her ANA levels (anti-nuclear antibodies) were highly elevated, which is a sign of possible autoimmune disease (in which the immune system attacks the body’s own cells).
In November of 2015, my daughter came down with strep throat and was given antibiotics. Her symptoms worsened to the point that some of her joints were swelling and, as the pain migrated, it impeded her from walking or raising her arms for long periods of time. One day she woke up with a red itchy rash on the back of her neck and behind her ears. Hours later it had raised into hives and begun migrating randomly around her body. Over the next 3 days we went back to her pediatrician and two different ERs but nothing stopped the hives. Doctors were confident her symptoms were not an allergic reaction to the medicine but nobody knew what was going on or what to do about it. Her pediatrician prescribed Prednisone, which finally started to clear the hives but that was discontinued when a whole new set of symptoms began. My daughter was acting loopy and drunk-like. Her head felt heavy and she seemed unable to control an urge to make funny sounds. She was howling like a wolf, cackling like a witch, and singing in gibberish while shaking her head back and forth. She seemed enraged and spoke to me switching between a deep guttural voice and a sweet little girl voice. Her pediatrician claimed this to be “hyperactivity,” which might be a result of the steroids. He was ready to send her back to school but I, as her mother, knew something was horribly wrong.
The rheumatologist took us in that day because she heard the worry in my voice and she was deeply concerned about the symptoms. That night she had my daughter admitted to the children’s hospital. After many tests, to include specialist exams, blood draws, EEG, ECG, chest x-ray, MRI and Lumbar Puncture, there was no real answer as to what was happening. After 5 nights, she left the hospital with a simple diagnosis of “arthralgia” (meaning joint pain) and medicine to help with inflammation and itching. At this point, she had also developed dermatographia, a bizarre condition in which one can scratch words or pictures onto the skin and it raises into a welt/hive.
Her symptoms continued and she was referred by her pediatrician back to the rheumatologist. In January of 2016, after more testing, my daughter was diagnosed with SLE (Systemic Lupus), an autoimmune disease that is fairly rare in children. The doctor prescribed strong immunosuppressants to stop the body from attacking itself.
The symptoms continued and my daughter’s neuropsychiatric issues were overwhelming her. She had separation anxiety, low frustration tolerance, emotional lability, emotional regression (e.g. temper tantrums, baby talk), intrusive thoughts (OCD), and rage. She would cry inconsolably for long periods of time without any reason, she head-butted me and attacked her younger brother like a wild animal, and she would repeat through closed lips, “I’m gonna die.” The pain in her arms and legs was consistently at a level of 6 or higher on a scale of 1 to 10 and she was experiencing days at a time in which she could not bear weight and walk because the pain in her feet and legs was so excruciating. After 9 weeks on the immunosuppressants, the rheumatologist had her re-admitted to the children’s hospital. This was a 7-night stay and the tests and exams still did not reveal what was going on. The specialists declared that my daughter did not have Lupus (she did not have specific blood markers for this) so they stopped all medications. As of March, 2016, they instead claimed that she had Somatoform Disorder (a psychological disorder in which an internal conflict tricks the body into feeling pain). They explained away the now extremely elevated ANA levels, the other abnormal blood work, and simply ignored her recent medical history (or at least failed to put two and two together).
My daughter’s pediatrician was unwilling to do anything more for her because the issue was “psychological” and he referred her to a psychiatrist. The children’s hospital refused to see her and her original rheumatologist felt conflicted because of the disagreement with the diagnosis and she would no longer see her either. We felt so alone and spent the next months just dealing with the symptoms.
It was May of 2016 when a friend sent me a link to an interview of Alli Hilfiger discussing her new book about her struggle since childhood with Lyme Disease. It rang so many bells it had me up and running to research as much as I could right away. We found an LLMD (Lyme Literate MD) and did some testing. We also found a new pediatrician who was willing to test for a diagnosis that one of the specialists had mentioned back in December—P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). We paid out-of-pocket for everything. In June of 2016 both tests came back positive! A definitive diagnosis was made for both Lyme Disease and P.A.N.D.A.S. in July of 2016 after a 10-month-long struggle in the fight for my daughter’s life.
The battle is not over. Both diagnoses are controversial and doctors disagree on how to treat them. Even with treatment it is a long road. In the meantime, my daughter’s pain and anxiety led to me taking FMLA leave from my full time job while she went on home hospital study for a semester of school. We found a nurse practitioner who is an expert in both Lyme Disease and P.A.N.D.A.S. and began a long-term treatment regimen. She ran more tests and found that my daughter also has multiple co-infections associated with Lyme, which explains her long list of symptoms.
In January of 2017, I went back to work and my daughter went back to school. I always fear speaking too soon but it is now spring and she is doing much better on her continuing treatment plan 19 months after her mysterious symptoms began. (Many people do not detect a tick and my daughter is one of them). We don’t know what the future holds but we can only live one day at a time…
On May 28th, 2017, my twin sister and I are running the Mountains 2 Beach Marathon to raise awareness of Lyme Disease and P.A.N.D.A.S and to raise funds for the LymeLight Foundation, which helps families pay for treatment (which is typically not covered by insurance due to the controversial nature of the disease and its treatment). To donate, please go to: https://goo.gl/rvZyib
For more information on Lyme Disease and P.A.N.D.A.S. go to www.jessiebweb.wordpress.com
Lyme Fundraiser story in PDF format: