When you see the word PANDAS, you might think of the cute, cuddly teddy bear you bought your niece. But for Karen and Frank Olmstead and their children - particularly Braeden - this is the word for a nightmare.

After months of tumult and uncertainty, Braeden was diagnosed with PANDAS in April 2017.  They are working with an excellent team of specialists to create a treatment and support plan to lead him on a path to recovery - which could, in fact, take years. For more information about the impact PANDAS has had on the Olmstead family, please read Karen's testimonial below. 

The treatments are expensive – this isn’t a well-known condition and insurance doesn’t cover much. Karen and Frank were resistant to establishing a GoFundMe because they are so very self-reliant, but with so many people wanting to help but unable to provide in-person support, they’ve finally agreed. Monies will be used to cover direct medical expenses, extra childcare for Treavor and Dillon, meals while they're on the constant go between medical facilities and treatments, and other needs to hopefully release the pressure valve just a little.

On a personal note, I’ve known Karen for 20+ years. She helped coach my field hockey team in high school, helped me get settled in to DC as a young adult, supported me after a layoff at the height of the economic downturn, helped us buy and sell our first home, cheered me on and encouraged me throughout my career, has been a mentor for mothering and helped me transition into this HUGE role. She is the consummate giver and people pleaser – always striving to help others.

And I know I’m not alone in knowing this about her. So, we’re turning to you, her village, to help us turn the table to help her.

Now, here’s more from Karen:

Our family is living a nightmare and I pray that I will wake up and have our lives on a different path. Since I was a little girl and volunteering for many camps and organizations for sick kids I always looked at them and was in awe at how the families fought for their kids and how strong they were as a family unit. I never thought I’d be living it.

For months now many have been wondering what has been going on because many of my messages were cryptic. Well it’s taken us months, this is short compared to others in our situation, to figure out some of what we are dealing with. I was desperate. I knew something happened to my son neurologically and it came on suddenly.

My son Braeden has PANDAS. I bet a lot of you don’t know what it is. I didn’t, but I do now. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections which goes something like this: A bacterial infection such as strep triggers the immune system to produce antibodies. But instead of attacking the infection, they go after the basal ganglia, the part of the brain that controls emotions, behaviors, and physical movements (exacerbating other previous symptoms as well).

Another way that to describe it are some Soldiers are marching along and some veer off the path, they come across a bogue which you can get through, instead of a fence which would stop them. The soldiers cross over and attack the brain. There are some skeptics out there but we have done our research, we have had him tested, we continue to test. The pieces of the puzzle came together but it came together that Braeden has a pretty severe case of it. We have dealt with him trying to jump out of a car or jump over a fence at Disney into a pond and many other things. He has had violent rages, extreme anxiety and has been in and out of the hospital.

Most of the time you can’t plan for episodes but we try to figure out triggers, most of the time we are on eggshells. He is currently on high doses of antibiotics but we hope soon to get him intravenous immunoglobulin (IVIG) therapy, thought to boost the immune system by delivering concentrated amounts of antibodies from healthy blood donors. The costs are very high and little if any are covered by insurance. They think we will need two treatments which will cost over $15k for each treatment. I am finding many of the tests and doctor’s visits are minimally covered. We have very good insurance but many don’t believe in the treatment so it’s not covered.

We have one of the best Doctors (Dr. Elizabeth Latimer) who treats PANDAS. People come from all over the world to be seen and treated by her. We have high hopes for the treatment and being lucky to be in her care, but we need to get into her schedule. Then we need to prepare him for the procedure which is not going to be an easy task and pray he can get through it. We need this treatment!

I want my son back. Treavor has said he wants his brother back. This is stripping my son of his childhood and is extremely stressful on the entire family. 

I believe that God sends me signs and support in his own way. I ask why but don’t wait for an answer because maybe I am not supposed to know. I believe that I am meant to be a messenger. A messenger to educate others, to help other parents and be an advocate for my son. I don’t want any parent to go through what we are going through. We have built a strong team around us from Family, Staff at his school, Educational Advocate, Pediatricians, Counselors, Church Members, Neighbors and close friends (who listen to my phone calls and meltdowns).

I am diligent in everything I do, I am a fierce fighter, especially for those I love. I have hope….. It’s exhausting and it sucks but I am up for the fight. I don’t want to lose my child.

Good resources to educate yourselves or learn about what we are going through may be found at these good sites.

http://discovermagazine.com/2017/april-2017/hidden-invaders
 
https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/pandas-frequently-asked-questions.shtml

http://www.pandasnetwork.org/understanding-pandaspans/ivig/

Movie: http://www.mykidisnotcrazy.com/