Help Treat Autoimmune Encephalitis

 I have changed the name of his GoFundMe from PANDAS to Autoimmune encephalitis because the Dr. says we are dealing with autoimmune encephalitis (inflammation of brain tissue)/ encephalopathy (Disease, damage, or malfunction of the brain. In general, encephalopathy is manifested by an altered mental state that is sometimes accompanied by physical changes) I recently asked the doctor if he could possibly return to school in the next couple of years. The doctor said "He should be in a bubble". Like the boy in a bubble.....I cried all the way home. How can we continue on like this? Who will care for him when we are no longer around? I need to work to have insurance, but I also need to spend as much time as possible with Joshua. His immune system is lacking some very important parts some are not replaceable. This means isolation from public.... an illness that a healthy person can fight could be detrimental for Joshua. This is how it all started What do you say to your child when they say "I just want to be better and be a kid before I get big..." Mommy and Daddy are doing all we can Joshua. We want you better too; more than you know. I hate that you see me cry and that you feel the stress of our worries. It's not fair that you feel the need to say you're sorry when a bill can't get paid. I'm sorry there sometimes isn't TV. I'm most sorry for the days you beg me to cancel work so I can care for you. I can't imagine how scary it must be to go this. On March 1, 2016, Joshua woke up a normal 5 year old boy. He started his day as he always did, eating his breakfast, playing with toys and getting ready to tackle the day. He was turning 6 in 2 days and excited for his water park birthday party. All of his happiness and spunk turned into fear, anxiety and anger very quickly. By 2pm that day, he was nonverbal, crying, and unable to tell his parents what was wrong. After 2 trips to the ER at Hurley Medical Center, he was finally admitted to peds with an unclear diagnosis and questions still to be answered regarding his sudden onset of behavioral changes. Doctors had many thoughts of what this could be but it was still unclear. A rapid strep was done and he was treated with antibiotics for a positive strep but still was having sudden onset psychiatric symptoms. Joshua had SEVERE OCD, Tics, hallucinations, frequent urination, and separation anxiety so severe he couldn't use the bathroom alone. Instead of being at the water park for his 6th birthday, he was at the hospital with his parents and brothers trying to figure out what was wrong. March 4th we were told Joshua was ok and no longer fit admission criteria. He was sent home with ask of his symptoms still and no answers regarding the sudden onset of behavioral changes and why their lives were suddenly turned upside down. His condition deteriorated over the next 24 hours and he was readmitted this time to Detroit Children's hospital with a working diagnosis of PANDAS. Pediatric Auto-immune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is a serious disease process that results in strep triggering a misfire of the immune response resulting in inflammation of the child’s brain. The effects are devastating to the child and everyone around them. They become anxious, have tics, sudden personality changes, OCD, decline in school abilities, sensory sensitivity, restrictive eating, irrational fears and much more. He has been in and out of the hospital 3 times and still is experiencing severe effect of this life altering disease. He was unable to celebrate his 6th easter with his 3 older brother’s this past weekend. Joshua celebrated his 6th Easter with only his parents and nurses at Detroit Children's on his 3rd admission since March 3rd. His brother Brandin's birthday was on April 7th and he and his parents spent it ALONE  at home still trying to put the puzzle pieces together. This has been the most life altering thing they have been through.   The good news is there is treatment. The bad news is, it is not covered by insurance and there isn't a Dr. in our home state that so far is willing to administer the treatment. The treatment starts with Antibiotics and high dose steroids followed by something called IVIG therapy. This treatment is very costly, not to mention the travel expenses to seek out of state help. Initial consultation is approximately $2500. IVIG therapy ranges from $10,000 to 15,000 and most children require at least 2 treatments if not 3 or 4. Most insurance companies do not cover this treatment by most. Worse yet, most Physicians that perform this treatment require up font payment. The longer the treatment is delayed the more severe and long lasting the effects of this illness can be.    The result is possible PERMANENT damage to the child’s neurological and psychological well being. According to the research we have reviewed, all of these symptoms could be reversed or prevented if treatment is done quickly and correctly. The NIMH (national institue of mental health) recommends treatment ASAP. Due to the urgencey of need for treatment we would like to meet our goal ASAP.  Please help my God Son and his parents Mike and Jolie get the proper treatment for our sweet, loving child. Your support means the world to us. We simply can not state in words how much we appreciate each and everyone of you. Thank you for your prayers, kind words and donations. Please visit the following links for further information on PANDAS and spread awareness on this life altering debilitating illness. Journal of Child and Adolescent Psyhopharmacology  Pandas Physicians Network https://abc.go.com/shows/2020/episode-guide/2018-07/20-072018-pandas
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Organizer

Jolie Swyrtek 
Organizer
Flushing, MI
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