Our daughter, Sierra, became very ill in March of 2017, she was 12 years old. For three months she was in severe pain, unwilling to speak above a whisper because her throat was covered in ulcers, all the way to her voice box.
Her body hurt all over, so much that I couldn't even lightly massage her without causing more pain. She could not sleep until her body would finally shut down around 4 or 5 in the morning.
Her nervous system was stuck in fight or flight mode. A loud noise or sudden movement would cause her to shriek in fear. She became unable to ride in a car without extreme car sickness.
She began experiencing horrific panic attacks that would cause her to feel like she was dying or losing her mind. Then came the debilitating depression. The light in her eyes went out. All the physical suffering and mental anguish was more than she could bear.
For five months I took her from one specialist to another, more vials of blood taken than I can count, MRI's, tests, and ZERO answers.
One doctor finally mentioned PANS/PANDAS
(Pediatric Autoimmune Neuropsychological Disorder After Strep) and it all began to make sense. That put us on the path to driving 4 hours away to see a PANDAS doctor. The first line of treatment is antibiotics, so we started immediately in July. Then we addressed the psychological symptoms with medication. For three months none of this helped. The trauma of no improvement caused her to have feelings of hopelessness.
We have now been treating her with antibiotics, antivirals, anti inflammatories, and psychiatric meds for well over a year. While she has had some quietening of her nervous system, she still lives with severe depression and anxiety, brain fog, balance issues, OCD, mood swings, and exhaustion.
What has happened is, her body had an autoimmune response to how sick she became in March of 2017. Her antibodies that should have focused on ridding her of the strep and 5ths disease she had, instead decided a part of her brain, the basal ganglia looked like the enemy and has been attacking it ever since.
This is the cause of her long list of debilitating symptoms.
Because of this, her quality of life is very poor. She cannot attend school. She should have started high school this year! She wanted to so much that she gave it her best shot. She was brave! She got up and got ready in spite of severe anxiety and bravely walked to class with tears streaming down her face. She stayed in class for 25 minutes before she began shaking and crying and sweating uncontrollably. It is horrible, as her mom, to watch her suffer through all of this.
In the past 18 months I have done everything I know to do to help her. Taking her to Natropaths and Chinese Medicine doctors, buying her a puppy in hopes he would lift her spirits, many many medical tests. She was unable to sleep in her bed, because it was too far away from my room, and she was so tired of being a prisoner in her own home, so I bought a new living room set...in hopes of it making her feel better.
Sierra's PANDAS doctor follows Dr. Swedo's work on this disorder and after this long of trying the first line of treatment without success, wants to move forward with IVIG
Unfortunately our insurance company is refusing to cover it! Her doctor has appealed twice, and will not try again. I have learned from other parents, that if we can get IVIG done out of pocket and prove that it helped her recovery, then they will pick it up and cover the next rounds of IVIG.
I have gone through all of my savings, trying to find help for her. I am just a step away from becoming an LMT, so that I can replenish my savings, but right now she needs my care around the clock, so I cannot pursue that, until she is healed from this terrible disorder that steals away our children.
I have had several friends tell me to start a fundraising page for her. Pride and determination has kept me from it. I am finally broken and humbled and desperately want my daughter back....so I am asking for your help.
Please help me get her the treatment she needs so that she can get back to being a kid. I don't want her to miss anymore birthdays (her 13th and 14th she couldn't celebrate with a party and friends.) I can't bear to watch her peers continue on with future plans and football games and dances, sleep overs and trips to the mall, while Sierra is trapped in a living hell and cannot participate in life. I desperately want my daughter back.
The cost of one round of IVIG is between $20,000 - $30,000 (her doctor feels she will need 4-6 IVIG infusions.) We feel very strongly, through research and our doctors knowledge that this is the only way she has a path back to a normal life.
I appreciate you taking the time to read Sierra's Story and any donation you can give will be immensely appreciated.
*I have checked with GoFundMe and for medical fundraisers they DO NOT charge any fees other than the 3% that credit card companies charge them. This was important to me to clarify.*