In the spring of 2012, Brendon developed vocal tics that were more severe than anything he had ever had. With the vocal tic came problems in school, which were looked at as behavioral. He would often obsess on thoughts and have compulsive actions. We took him to the ER one night because he was clearing his throat and sniffing every second to the point that he started to feel he couldn’t breathe. At the ER, they did blood work and x-rays looking for a cause of the constant throat clearing and even though he had no sore throat, just the tic, blood work showed strep. He was diagnosed with strep throat, given an antibiotic and we were sent on our way with the suggestion of using Benadryl to calm his tics. Within a few days, the tics stopped.
The improvement was short lived and a vocal tic returned in August of 2012. Brendon started out the school year being a model student but that suddenly and dramatically declined. The vocal tic became a severe motor tic and involved violent thrusts of his head, shoulders and neck. He became compulsive and even had hallucinations. He was unable to function at school. I sat down one night and resorted to Google, having no idea what I was about to find. Who knew Googling two simple word,” strep” and “tics”, would end 12 years of searching for answers… PANDAS. Everything made sense. This was my son!
The one thing I know I have done right throughout this whole experience is to never give up, never stop questioning and never accept a diagnosis for your child that you feel is not correct. My son Brendon is 12 years old. In his 12 years of life, he has seen over 12 different physicians and pediatric specialists including; allergists, neurologists, endocrinologists, rheumatologists. Last year, after 9 years of searching we finally got the PANDAS diagnosis.
Brendon has had motor difficulties (severe at times) including ataxia and choreiform movements since early childhood. He developed vocal tics which then manifested into motor tics. After being in a general education math class he suddenly declined in math skills and was no longer able to keep up and placed in a special education class for math. Brendon experienced insomnia and extreme fatigue at various times. His handwriting steadily declined to where his beautiful cursive handwriting in 3rd grade became worse than his pre-school writing. There were weeks where he seemed to process absolutely nothing and often seemed defiant. There were times Brendon would suddenly be unable to write something as simple as his own name. I was at a loss for what was causing all of these problems. Like many parents dealing with this I did not know where to turn.
Stories from our members help to let us all know that we are not alone in our efforts to find answers, help our children, and make a difference.
I will start off by saying that I thought sharing my son’s story would be so easy. As I typed, and retyped, and edited, and started over four times, I came to the realization that it isn’t his story that is hard to put into words because there are many parents out there just like me, living the same hell, struggling to understand what is happening to our kids. What is hard to put into words is the emotion and anguish that a diagnosis of PANDAS causes.
My first draft was an overview of my son’s medical history. The protein allergy as an infant, the onset of abnormal movements at age 3 that were a mystery to doctors, his misdiagnosis of ataxic cerebral palsy because the top neurologist couldn’t come up with an answer for his movements, the years of repeated strep and scarlet fever. Then the school issues, the decline in cognitive abilities, him not being able to write his own name, the behavior issues. As I was proofing that version, I couldn’t help but feel how mundane it came across. All kids have issues, right? Well that is what I was told by every doctor Brendon saw. When Brendon developed episodes of vocal tics I was told, “tics are normal!”.
by Michele Jacqueline Kleczkowski
I brought him to his pediatrician and explained what I had found and requested a throat swab. She did a strep swab on Brendon’s throat... it was instantly positive! He did not have a cold, no fever, not even a sore throat. She told me that with Brendon’s history of strep and scarlet fever and his symptoms now with a positive strep swab, she also suspected PANDAS. Just like every other parent who gets this diagnosis, it is bitter sweet. I finally had an explanation to all his issues over the past 12 years, but what now?
We saw a “PANDAS specialist” and after blood work and testing, he was given the formal diagnosis of PANDAS. Brendon was treated with steroids and antibiotics. He had his tonsils and adenoids removed. The specialist recommended IVIG (where immunoglobulin is administered through IV to reboot the immune system). With treatment still in clinical trials at the time insurance would not cover. We were unable to follow through with IVIG treatment due to the costs. We were back at square one as the specialist would not treat my son with anything other than IVIG. It was terrifying to be back to the point of feeling helpless and having little hope. I was forced to find someone else to treat my son. After collaborating in support groups, making phone calls across the country, all night web searches and lots of tears, we found a rheumatologist that would see Brendon. Although she was not an “expert” in PANDAS she did agree to treat my son with prophylactic antibiotic but also sent us to see a neurologist for the tests to “rule out” other causes. It was an exhausting 6 months of numerous tests; MRI’s and countless blood draws. After every test was normal, other than his blood work showing strep, we were told by his neurologist, that this was “out of her expertise”. We were sent back to the rheumatologist.
I wish, more than anything, that I could say Brendon’s story has a “happily ever after ending”, but just like so many other kids dealing with this unrelenting illness there seems to be no end in sight. He has had to remain on prophylactic antibiotics since February of this year and along with treating the inflammation or his tics return. I walk on eggshells daily hoping that the antibiotics continue to keep his immune response at bay and he does not have another bad flare. I am sharing Brendon’s story not only to raise awareness for PANDAS, but to encourage parents, physicians and educators to think outside the box when it comes to a child’s struggles. If I had given up on my son, I cannot imagine where he would be right now. Instead, Brendon is slowly making strides and improvements. Like I said in the beginning, there is no possible way to convey the emotion and the heartache that goes along with this illness. I will not give up hope for Brendon’s complete recovery. I am so grateful to the courageous parents fighting the same battle that have unselfishly given their time and energy to guide and encourage me along the way. There needs to be big changes with regards to diagnosis, treatment and access to care for our children and we can only accomplish that if we make a promise to never settle, never stop questioning and never give up.