As some of you may know my nephew, Zion, will begin treatment on Tuesday for a condition he was diagnosed with called PANDAS. This treatment will cost $10,000 out of pocket for my aunt Tiffany and her husband Cody. They have received several messages from people asking how they can make a donation towards their medical costs, so I figured this would be an easy place for people who feel led to donate or post prayers for Zions healing. We are grateful for any amount received! Below is a little bit more of Zions story, how it all got started, and what he has been dealing with over the past year.
Zion was your typical 5 year old, he was smart, thoughtful, obedient, respectful, affectionate, kind and a great eater! He had just entered kindergarten and was so excited about things to come, new friends, learning, going to the cafeteria and, of course, recess. But just a few weeks in Zion fell victim to his first kindergarten sickness, Strep Throat.
What should have been a simple trip to the doctor, some antibiotics and a few missed days of school turned into the start of a complete change in Zion..
A few days after the strep infection was gone Zion woke up with a throat clearing TIC, they were so frequent and disruptive even his teacher was concerned. He had also developed some OCD like behaviors, he would ONLY wear certain shirts to school. Doctors thought the throat clearing was due to allergies or maybe acid reflux but after an all clear from the Allergist and reflux medications that offered no relief, we were back to square one.
As time went on his tics changed, from throat clearing to facial tics, eye blinking and nose squinting. And then, right before Winter Break of 2017 Zion caught another strep infection, and things took a turn fir the worse.
Zion’s TIC’s now presented as facial and nail biting. He would often be in tears begging for help, asking why he wasn’t able to stop. He was in tremendous pain. At the same time he developed extreme anxiety and debilitating depression. He stopped eating and spent most of the day in panic mode or in a fog. He had an irrational fear of throwing up that tormented him, he would often say “I can’t stop thinking about it, I can’t get it out of my head, mommy how do I make it stop?!”
At Christmas Zion’s symptoms became so concerning we cut our vacation short and brought him home to see the doctor. After describing all of the changes Zion had experienced over a short period of time, his pediatrician mentioned the possibly of a condition called PANDAS. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. Basically Zion’s immune system had a misdirected response, instead of attacking the strep infection the antibodies attacked his brain causing inflammation which then causes symptoms that mimic mental illness. After countless hours of researching and making timelines of illnesses and Zion’s symptoms, tics, OCD, anxiety, depression, food refusal, defiance, disobedience, irritably and rage, I too believed that this was what Zion was suffering from.
Finally, we had an answer! Now what? How do we heal him? Zion was getting worse, he began having violent episodes of rage and 2 and 3 hour long tantrums over seemingly nothing, we wanted him treated immediately! But as I began researching, the hope that I had for my son being healed turned into overwhelming anxiety. PANDAS is a disease that most doctors had either never heard of, didn’t know how to treat or flat out didn’t believe was real, it is considered “controversial.” We also found out that the few PANDAS specialists in the nation don’t take insurance and the treatments they provide are NOT covered by insurance. We were crushed! After all this time we finally know what is wrong with our son but treatment seems like an something we would have to save up for.
After a 4 month wait, we ended up taking Zion to Washington DC, to see one of the nations top PANDAS specialists, Dr. Latimer. Dr. L spent 3 hours looking over Zion’s entire medical history from birth and listening to what he had experienced over the past several months. By the end of the visit Zion was officially diagnosed with PANDAS and was sent home with a TON of blood work to have done, his treatment plan, IVIG. So on October 8th we head back to Washington for Zion to receive his first, and hopefully ONLY, round of IVIG. The doctor is hopeful that Zion will only need 1 round since we caught his disease early enough but she can’t make any promises.
Zions treatment, for one round, will cost $10,000 out of pocket and must be paid in full the morning of treatment. We are hopeful that this treatment will heal Zion’s brain and we will get our son back. Thank you so much for supporting our family during this time. If you have any other questions please feel free to reach out.
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