IVIG Treatment for Brandon

IVIG Treatment for Brandon

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Dawn Durr started this petition to United Healthcare

United Healthcare refuses to pay for my sons medical care.  He needs ivig treatment so he can get back to good health.

Here is his story.

Brandon Scott Durr’s PANDAS Story

Brandon is my only child and is 9 years old.  The last few years have been very hard on him.  In January 2016, Brandon was dianoised with PANDAS.

 PANDAS is defined (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.  For more information visit http://www.pandasnetwork.org

 

Before being diagnosed Brandon had many symptoms but we had no idea what we were dealing with.  His first system was constant eye blinking around the age of 5.  Then once starting Kindergarten, he developed all sorts of fears and thoughts.  Our doctor told us this was normal 5-year-old behavior.  Then he began to get bullied in kindergarten and things started getting worse.  How I wish I had known then what we know now.  As time went on we decided it was best to homeschool Brandon because his fears and movements had started to get worse.  Again, the doctors said it was normal. I had not seen many kids this age has body movements and it be normal.  We homeschooled Brandon the next year and made him repeat kindergarten.  By Christmas of 2015 he had developed another tic (body movement) which was moving his mouth open and closed so much that he caused his mouth to be strained and sore.  We took to a new doctor and blood work was done to show that he had several infections active and past infections. He tested positive for strep even though we had no symptoms.  Once diagnosed with PANDAS, he was placed on an antibiotic and seemed to get much better, but it was short lived.  In the beginning of 2017 we reached out to Doctor K in Illinois, who is a PANDAS expert, who seen Brandon and confirmed that he did have PANDAS.  Doctor K recommended IVIG (Intravenous immunoglobulin).  IVIG treatment allows bad cells to be replaced with good cells in hopes that it will reset the immune system.  Brandon had 1 IVIG treatment in April 2017.  Insurance would not cover it because they felt it was a risk and may not work.  Brandon improved greatly after IVIG treatment, but it only lasted about 6 weeks.  After that all the symptoms returned.  Brandon needed more that one IVIG treatment.  We had to borrow, sell what ever we could to get enough money to pay for the first one he had which was $15,000.00.  Fast forward to this year and Brandon has over 150-200 Tics (vocal and physical) and at times can’t function through a normal day.  He is homeschooled on going now since his immune system is compromised and if he is around someone sick he will get even worse.  We’ve been through restricted eating where he has lost weight for fear of dying if he eats and gets choked.  He has eye movements, throat clearing, hand movements, head movements, leg movements, belly moving in and out movements.  Brandon has so many fears that he can’t be in a room by himself, he can’t go to the bathroom by himself or even play outside.  We know IVIG works but we can’t afford it.  We’ve already sold our home with plans to get a new one and move relatives in for extra help.  I have left my job because of the mental stress on me and the care that my son needs.  Our doctor even wrote notes to say Brandon always must be in the care of parents.  He begs to have a normal 8 (almost 9) year old life.  He begs every day for IVIG because he knows it will make him better.  How do you tell your child you can’t afford to make him better?  Right now, we have his new doctor who is in Carmel Indiana.  We travel 2 ½ hours each way to get him seen.   Dr Scott has ordered IVIG treatments monthly to help the immune system reset itself.  Without this treatment Brandon will continue to get worse.  PANDAS causes brain inflammation which in return causes all the movements, OCD, ODD, etc.  I need help to get my son the help he needs.  United Healthcare denied this treatment.  Brandon needs this treatment monthly, so he can get back to some sort of normal.  I sit and watch my son beg for treatment.  We have videos of all the movements and of him crying begging for help.  What gives United Healthcare the right to deny him his treatment.  Please help us give some exposure to his case so maybe we can pressure insurance.  If you are interested in the videos I would be happy to share them with you.  We are open as well to be interviewed. I did inform United Healthcare that I was going to every outlet I could to get them exposed.  Each treatment now is $17,000 and he needs at least 20 of them.  My husband and I can’t get any help because my husband is employed at General Electric so they think we are made of money.  Please help me be able to tell my son that we can finally get treatment.  I want to see my son well.  I am afraid he is going to give up eventually and stop trying.  He is taking all sorts of supplements and will be on antibiotics for years.  This is currently his third year on antibiotics.  Please help me bring hope back to him.  I will be happy to also share blood results to show the infection or anything you might need.  Thank you for taking time to read this.  If nothing else, please pray for us because every day is a struggle.  Night time is full of so many tics that he can’t get to sleep because his body won’t stop moving.  Looking in his beautiful brown eyes and knowing I can’t afford to help him just hurts my heart. I am crying as I write this.  Insurance denying this has caused such a loss of hope for our life’s. 

 

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