My son changed over night or so it seemed. It was very frightening . Thanks to the tribe of women in my life that helped me with referrals I was on the right path to wellness.
I moved here from California, November 1, 2017. As we were adjusting and settling in I wasn’t concerned with what my son was saying. Figuring it was normal with such a life change such as a move. What I did find odd is he would need to tell me that his finger touched the carpet. Ironic because this was the same kid that two months earlier would drop his cookie on the ground and told me there was a five second rule.
Fast forward a few months, I took my middle son to Tricia Phelps LCSW. Tricia was referred to me by my friend DeEtte. While meeting with her I explained how my younger son was having issues at school. I was told there was nothing going on and my son was doing well in school. Yet his report card in the comment section had two words on them; “Behavior Issues”. While I was assured by the principal it wasn’t anything to be concerned about and how my son was a pleasure with the sweetest heart. It didn’t make any sense.
My youngest son was anything but defiant. I am not that mother that thinks her children can do no wrong. I am THAT mom that 99.9% of the time stands in alliance with the teachers.
My son went from loving to learn to disrupting the class and shouting out.
I was overwhelmed and I didn’t know how to help our son. Tricia told me she could help me with the items regarding my sons behaviors. First she highly recommend me to Collin County Pediatrics
That was the game changer for me Dr. Horn was very innovative in her way of practicing. Dr. Horn suggested doing a blood test on my son to check for Strep. She asked me if I have ever heard of PANDAS and not the ones at the zoo. Dr. Horn stated we needed to check medically if there was something to be addressed before we start diagnosing. It was recommended to keep seeing his therapist Tricia. When the results came back his strep levels were off the charts. Being referred to occupational therapy, an infectious disease doctor and neurologist. The neurologist stated there was nothing to do unless I wanted to medicate and start OCD drugs. I didn’t want to do that not now.
During this time I found out about Frisco ISD Early Childhood School. They have a parent room inside the development center. It was a plethora of information and items you could check out. Everything is free and funded for Frisco ISD families. I totally took advantage of this free resource. Some of the items were used and implemented while finding a diagnosis. It was refreshing to find a place where other parents were going to get support.
I ended up going to Dr Rao instead of the infectious disease doctor as he came highly recommended from a woman in my tribe. Her friends daughter had PANDAS and they were seeing results with Dr. Rao. As someone who never heard of PANDAS I myself was skeptical. Was this a Texas thing? I called my sons Pediatrician in CA and asked if he heard of PANDAS. He said he had one case in 11 years. That solidified it for me. This was new and it was going to be hard to get treatment. So I went with Dr. Rao he was the go to if I wanted help.
Tricia was needed as our sons advocate at school. While this was happening my sons desk was placed in the corner of the classroom with his head facing the wall away from the other students. It was clear that my son was being punished for something he could not control. Constant miscommunication with the Teacher she would say one thing and do another while relaying a different message to me. While the teacher was saying he was fine behavior wise what she was doing in the classroom was not the case. I would have never known my sons desk was in the corner facing the wall, if I didn’t show up to meet with the teacher one day.
While we didn’t have a firm diagnosis during this time when his desk was placed in the corner of the room. I did realize that this was indeed against school practices and or the law especially with a child with disabilities. I did get a full report from the school therapist that the teacher wrote up. Something along the lines of; ” His eyes sometimes looked glossed over and he repeats things. Blurting out that he touched something while looking for approval before being able to move on.” As his mother I noticed that he refused to do work at times, would constantly be going to the school nurse or asking to go to the docor as he was nervous something was happening to him. Sad that I would leave him. He would not be as engaged at times.
My son would get in the car after school and smile while he got in his seat. He would say now drive away with a smile and then he would cry. He would say how he never wanted to go back. I was beyond devastated and I had a new distain for this teacher. Sometimes he was singled out or he just didn’t understand what was happening. It was a nightmare trying to figure out how to help my son and get the school on board.
We needed Tricia to be our sons voice to get a 504 and protect our son so he could be treated fairly while giving him the tools he needed to be successful. I highly recommend Tricia if you need a child advocate. While I have no ill feelings toward the school and actually have a great relationship with the Principal. My husband and I are looking into private schools with smaller classes sizes. Which ironically is why my Husband and I moved to Frisco in the first place. For their school and class room sizes. For now it still seems that my son is not getting the right tools to succeed. Even with the diagnosis. I believe this to be in general as PANDAS is still so new.
PANDAS is still fairly new some don’t believe in it and others are rallying to make you more aware. I wish the only association I could make with PANDAS was a bear. Sadly that is not the case. My hope is that more people are aware of this disorder and more resources will be available for the Parents, teachers and children.
Some days are so so, great and or even fabulous. This week we are in a flare up and it seems there are more challenging days than it is smooth sailing. Yet thats ok. I would rather be here with my son than in the dark trying to find him.
Today is PANDAS/ PANS awareness day. What is PANDAS / PANS?
Pediatric
Autoimmune
Neuropsychiatric
Disorders
Some reading material; Article on PANDAS,”She’s Not There” and What is Pandas?
