If you’ve been a patient with us for a while, you likely know and love Katey Bacot. Her positive, upbeat spirit, and her caring, always willing to help attitude affect everyone she meets or speaks to. What many of you might not know, however, is that her son was diagnosed with PANDAS. So what is PANDAS, and how is raising a child with this disease both challenging and rewarding at the same time?
What is PANDAS, PANS or PITANDS?
PANS: is short for Pediatric Acute Onset Neuropsychiatric Syndrome. PANS can be triggered by infectious causes (like PANDAS or other PITANDS – see below), or by non-infectious causes, and includes symptoms of sudden onset of OCD, or severely restricted food intake, along with some of the other symptoms listed below.
PITANDS: is short for Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder. PANDAS is a kind of PITANDS, but other infections can cause this as well, including mycoplasma infections, Lyme disease, and several viruses.
PANDAS: is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. This is PANS or PITANDS specific to strep infections. The streptococcal bacteria leads to neuroinflammation that causes some significant symptoms listed below. The diagnosis of PANDAS is made if two out of three strep tests are positive (throat culture, ASO, or Anti-DNAse B), along with sudden onset of OCD/Tic symptoms. This is the most well-known disorder among the three.
How common is PANDAS?
PANDAS is a relatively new diagnosis in the pediatric community. The first discussions came out in 2002 but there is not a lot of research on PANDAS and why it is becoming common among our children today. In my opinion, it is not well known from general practitioners so there are many misdiagnoses. It took two years to diagnose my son. With multiple tests, lab tests, energy screenings in Chinese medicine, which are done from a holistic pediatric approach, as well as throat cultures and blood tests.
His diagnosis was delayed because his symptoms were not sudden onset, so we were getting the general testing. Once we looked at other options and spoke with a functional and holistic doctor, as well as my own personal research, we did a lab draw and it confirmed the diagnosis.
What are the signs and symptoms that your child might have PANDAS?
- ADHD symptoms (hyperactivity, inattention, fidgety)
- Separation anxiety (child is “clingy” and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
- Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment), anger and aggression
- Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
- Changes in motor skills (changes in handwriting, reading or math)
- Joint pains
- OCD and/or TICS
What is it like having a child with PANDAS? How is your life different than that of a parent of a ‘healthy’ child?
Until 4-years-old my son was a normal child. I thought he skipped the ‘terrible 2’s’and hit it when he turned 4, but I was very wrong. He had a strep throat infection, we did a normal round of 10-day antibiotics and thought that it had cleared up. Over time, the symptoms became worse. Anger, aggression, becoming very upset over little things, bed wetting, OCD with constantly checking the weather app on my phone and looking out the window, chewing his fingers, separation anxiety (crying when I would drop him off at daycare), complaining of knees, legs and feet hurting. He had no focus and his stuttering became worse.
It was not my normal, happy boy, and that is when our journey started. We went to our normal pediatrician and got no answers other than normal child temperament and growing pains.
We sought treatment at CentreSpring MD, and at that time the testing started and within 6 months we had a diagnosis. We have now been on a treatment plan for one year and our next step is IVIG.
He was great from March to August, then got re-exposed and relapsed. We reassessed the treatment plan, and now he is back doing well. We have days that are like a roller coaster but most days he does well. If we take the medications, supplements, follow dietary restrictions and self-care, activities (sports) and stay on the routine he does well! To ensure he continues to do well, we have to complete the whole plan. The holistic approach with some Western mediation has been the game changer for my son. He would not be doing as well without the supplements and a complete treatment plan.
What are 3 things that have helped your child manage symptoms and lead a better life?
- Schedule: Keeping him on a schedule and trying not to disrupt his ‘normal’, being continuous with his supplements, sleep, and making sure he has activities in-between.
- Supplements: They have helped him a lot with minerals that he was lacking, and supplements to help him remain calm in stressful situations.
- Holistic Medicine: Having a holistic provider that goes above and beyond to ensure that we are on the correct path for wellness for my son has been crucial. Dr. Jamilet and Dr. Taz research the diagnosis, go to conferences to ensure that their patients get the best care, and care for their patients as well as the parents. They give support when needed and are willing to try a new medication or supplement to ensure that we are on the path to wellness.
What is your advice to a parent who is just in the beginning stages of dealing with this disease?
Do not give up, continue to research, and do your “homework”! There are many other holistic and natural ways that you can help your child. Sometimes medications are not needed, supplements may work just as well! It takes more than just medication. Children need a full regimen. Sleep, diet, activities, supplements, medications and self-care are all important.
Also remember that they are people too! Even though they are children they still have thoughts and feelings, so listen to them. They can tell you how they feel and what is wrong. My son kept saying “I can’t help it” which I thought he could, as I raised him with manners and self-control, but in all fairness he really couldn’t control himself and he kept telling me, but I didn’t listen.
I also recommend joining a support group with parents that are going through the same thing, and reaching out for support.
Lastly, show your children love and support when they are having a “moment” or a rough day. It is good for both of you! You are doing your best as a parent and they are still learning the world and what they deal with can be overwhelming. Give them a hug, talk to them, color or play with them. They need to know that you are there to support them!
I hope this helps on your journey with PANDAS!
Categories: Pediatric Wellness