Our family and B have gone through so much since December 2018. It has been completely devastating emotionally, mentally, physically, and financially. At the time, there didn’t seem to be an end in sight, there didn’t seem to be any light at the end of this very dark tunnel but I never and will give up. I’ll keep fighting, seeing doctors all over the place, and keep moving forward until Brant gets his life back! Until we get the son that we had back! Nothing at all matters more to me.
I’m going to share a photo I’ve never shared publicly; it’s a very hard photo for me to share but I need people to see it and I need them to understand and I desperately NEED anyone in the healthcare industry or anyone who works with children to verse themselves in this illness so that what has happened to B doesn’t happen to other children and adults like it do right now every single day. Side by side you can see before and after treatment for PANS PANDAS.
I took my baby to so many doctors and hospitals where he saw even more doctors and I BEGGED them to look and SEE my son and HEAR me! This is not a baby boy with mental illness and behavioral issues; he was and is a very, very SICK little boy who needs serious medical attention, not a psychiatrist, therapist, and dietician, which is all anyone offered us everywhere we went.
My baby was withering away, starving and dehydrating himself to death while also manically and compulsively exercising all over the place. He COULDN’T stop, he cried and begged and WANTED to stop but he could not. He freaked out like nobody has ever seen or could imagine if we tried to stop him, his brain was/is on FIRE and would not allow him to stop. They looked at my baby suffering and instead of looking further, they labeled him, sedated him and even restrained him and shoved a feeding tube down his nose and told us it is what it is, go see a psychiatrist, therapist and dietician and he needs to be an inpatient in a specialized eating disorder facility.
While I’ll forever be thankful to an eating disorder facility in Durham, NC, for restoring my boys’ nutrition and stopping him from starving and dehydrating himself to death, I am also forever angered by those months that my baby didn’t receive the medical care he truly needed and even more saddened over the fact that countless healthcare professionals missed it. Those 7 months he went without proper treatment have left me traumatized. This has given our entire family PTSD.
When this began, B was unable to attend school, couldn’t leave the house, couldn’t sleep, couldn’t wear clothes, couldn’t and wouldn’t eat or drink, suffered the most intense OCD, panic, and anxiety I’ve ever heard of. He operated in a state of pure panic and fear 24/7. B has now had 23 high-dose IVIG infusions and 5 rounds of Rituxan. These medical interventions saved my son’s life. He is not fully out of the woods but he has come such a long way. It was and still is the most heartbreaking and terrifying thing we have ever endured.
Now B is back in school for the first time since 3rd grade as a 6th grader. We are working with the school to provide B with the tools he will need to be successful in school. These kids need 504s and IEPs. They are not bad kids; they have an illness that sadly can come when challenging symptoms that look like behavioral issues, but they are medical! He is able to leave the house again; he wears clothing, plays sports again, eats and drinks normally, and is healing. They do get better. It just takes time and PROPER TREATMENT.
The trauma he and we as a family have endured this year has permanently changed us. For this reason, I cannot be quiet! I’ll never stop talking about PANS/PANDAS/AE. We need MORE; we must do BETTER!! These kids and adults need proper care!
My son was and is not crazy! His immune system was attacking his body, most notably, his brain.
~Marie Sanders- a PANS/PANDAS warrior mama