The Ward Family Story (told by mom)
They say when your child has PANS/PANDAS that you remember the exact moment something changed. We experienced that “moment of change” at Fantasyland in Disneyworld when our oldest son Neely was six. As I stood with our two-year-old in the stroller, me crying and pregnant with our third child – a stranger walked up and said “you know that behavior is not normal, you need to do something about that.”
It would be two long year after that incident before we first heard the words – PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) or PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
After the incident at Disney, he continued to decline. He was diagnosed with ADHD and a mood disorder. Over those two years we tried all types of psychotropic medications to no avail and eventually the possibility of bipolar disorder was mentioned.
By the beginning of third grade he was raging daily, had major school anxiety, was irritable and disagreeable all the time. He was having separation anxiety including school refusal, tics, OCD behaviors and more. And he was sick - ALL THE TIME!
A physican that had been treating him for several years finally figured it out one day when I mentioned he had a recent strep infection. After receiving blood work results back we discovered he also had an acute case of MONO.
During our research we came to the realization that our daughter, Lucy, also had many of the symptoms. Our angelic four-year-old had turned into a screaming, irrational mess. She was also showing signs of OCD, having potty accidents and sleeping difficulties. These symptoms initially started after a pneumonia infection 6 months prior. After being treated with 2 months of antibiotics the symptoms subsided only to reappear after a streptococcal infection a few months later.
At the same time, Neely was still struggling and we weren’t seeing vast improvement with prophylactic antibiotics. Most likely this was due to MONO being a viral infection and more importantly he had been dealing with these disorder for so long without being diagnosed or treated.
Within a few months he was on stimulants, non-stimulants, anti-depressants, anti-psychotics and incontinence meds - he was 8 - and still raging daily! In January of 2014 during a rage he began looking for a knife so that he could. “murder himself.”
Fast Forward to Today...
Six Years after Neely’s initial diagnosis and three kids with PANS/PANDAS later!
There are many, many things that are horrible about PANS/PANDAS but one on those that is really devastating is the loss of “childhood” for these kids.
Neely is now 14 and getting ready to start high school. His nightmare of this disease has been going on for ten years. Five years ago he had 2 rounds of high dose IVIG (Intravenous Immunoglobulin) at the out-of-pocket cost of $32,000 and did great for a year and half. A vaccine challenge required by our insurance company caused a major regression for him a year and a half ago. Only to still be denied treatment coverage over and over by our insurance company.
He was very sick with several illnesses and ended up on hospital homebound and was once again in a very bad place physically and mentally because of PANS/PANDAS. After a 3 month steroid burst he began to improve and now two and half years later he is doing great. He is off all antibiotics and we are working on building up his immune sytstem.
Lucy is now ten and has been living with PANS/PANDAS for 6 years. You know what she hates? All the medicine she has to take. What kid wouldn’t? And they take a lot. She was doing well for awhile and then the insurance company started denying an antibiotic shot she had been getting every 3 weeks for two years.. Four weeks after her last shot she was postive for strep on three oral antibiotics. She had strep seven times in a year's period after that and had her tonsils removed last November. About that time we also realized she was having absence seizures.
Our youngest child, William, who is seven, began showing symptoms at age two but wasn’t diagnosed until age 3. In the two years his immune system has tanked and he has dealt with everything from being strep positive for six months straight on three antibiotics to a seizure caused from the coxsackie virus (hand, foot and mouth disease) and many other things over the past four years. He spent more than half of his first grade school year on hospital homebound. He too has been denied treatment coverage by our insurance company over and over.
Our Why
PANS/PANDAS is a daily battle for our family - our children suffer from OCD, tics, anxiety, food restriction, ADHD, Oppositional Defiance Disorder, school regression, behavior regression, depression, emotional lability, sensory issues, flight or fight response, siezures and more.
They are sick a lot of the time. They are immunodeficient and often deal with more than one illness at a time including strep infections, mycoplasma, epstein barr virus (mono), coxsackie , Herpes Simplex 1 HHV6 (Human herpesvirus 6) and more.
We have spent tens of thousands of dollars on treatments, surgeries, doctor bills, lab work, antibiotics, antivirals, supplements, and more. However, the treatments that they really need - IVIG - are still out of reach. Denied over and over by insurance. We have been lucky enough to have several amazing PANS/PANDAS doctors that have worked to try to get these treatments approved but to no avail.
How You Can Help
Neely, Lucy and Will are amazing kids who bravely face the reality of living with PANS/PANDAS every day - for a very long time. We don’t want other children and families to have to go through what we have.
We would love to see you October 19 at the 2019 PANS Awareness Walk to raise funds for SEPPA. However, if you can be there - you can still participate several different ways. You can do a virtual walk in your hometown, you can be a sponsor or you donate. Our family has a $2,000 goal. We would love to have you join our team - The Ward Warriors!