The Graves Family Healing & Brain Cyst Tumor Battle

We are The Graves Family and our children are dealing with a rarely diagnosed medical condition called PANDAS. (Pediatric AutoImmune Neuropsychiatric Disorders Associated with Strep Infections) Their mom is also battling 9 months of strep and a brain cyst that could be a tumor. That is causing her to loose her vision m, balance, and quality of life.

Our life was turned upside down in August 2023 when our three children started to exhibit behavior way out of their “norm”. After many frantic phone calls and messages I was advised to take all the children to their primary doctor to have Rapid Strep tests. Without the normal sore throat, cough, and fever all the doctors were shocked when all three kids were positive for strep. Their only symptoms were neurological in nature, pointing to swelling in the brain from the strep infection that had been hiding unchecked in their bodies for over 2 months.

With this illness the children are dealing with extreme separation anxiety, OCD, food aversions, tics, hyperactivity, choreiform movements, Akathisia, so many different sensory processing abnormalities, and hallucinations.

Tyden is on long term antibiotics and the girls have both been on numerous rounds of antibiotics. The strep just keeps coming back. Now that we know what the classic signs are of PANDAS we can see that this may have been something Tyden has been struggling with since he was 3/4 years old.

I’ve even been hit with Strep and done a round of antibiotics. There are vitamin deficiencies that have to be corrected, and tons of probiotics to take (specifically ones that don’t contain strep).

Our children do not have regular sleep schedules as nightmares, bodies that don’t calm down at night, and severe joint pain make it extremely hard to sleep or even get a restful sleep.

I have been taking care of the children, their schooling, and doctors appointments. While Tyler has taken a leave of absence from his job as an Electrician to take on all of the responsibilities of the farm, orchard, store and deliveries while I focus completely on getting the kids back to their normal.

Tyden is waiting on ENT Specialists at Children’s hospital in Madison to have his tonsil removed, again. This will hopefully help with his obstructive sleep apnea that is causing him to stop breathing multiple times each night. That is scheduled in February, hopefully he’ll get in sooner!

Emberly gets to see a more local ENT, this week and we should know more about her tonsil situation soon.

We are asking for everyone’s help and support in our time of need. The specialists the kids have to go to are not accepting new patients at the moment. Which leaves us with the only other option in the state of Wisconsin being an out of Pocket PANDAS specialist in Port Washington.

We will be holding a fundraising/silent auction event at the end of January early February in Brownsville with online options available for biding on auction items for those who can’t make the event.