Today is Sibling Day. Let’s take a moment to celebrate the siblings of our kids with PANS because we know the entire family feels the impact of PANS. Let’s put the focus on them today (or sometime this week) and give them a special thank you for all they do, all they forgo and acknowledge how their life is affected both positively and negatively. Let them know you understand how difficult it is for them. Let them know that your door is always open for them to talk about their feelings. Celebrate all of their accomplishments too.
Some kids do not adjust well to having a special needs sibling while others seemingly become a super hero. No matter what, siblings of children with special needs have their own set of special needs themselves. Having a sibling with special needs create challenges but it can also present opportunities for growth.
Siblings often develop good qualities as a result of these challenges:
Siblings also may experience conflicting feelings and have trouble coping with the demands the special needs child places on the family. The brother/sister with PANS will typically demand greater attention and the health issues/behaviors are can be confusing, frustrating, scary, etc. Siblings often hold a lot in and their worries and frustrations can take an emotional, social and academic toll. Sometimes it is important that the siblings have someone to talk to. Some kids convince themselves that they don’t need anything or attention for themselves and therefore try very hard to not get in the way. Some kids find ways to get attention, either trying to become indispensable and perfect or by negatively acting out.
It is essential for parents to foster an open dialogue between themselves and the siblings. They should, age appropriately, explain what is happening with their brother/sister and allow time for the siblings to voice their feelings and questions. Ultimately parents need to let their kids know they hear them, understand them and empathize. Also, it is important to highlight the siblings’ accomplishments so their progress is not forgotten. And when they have struggles, time and attention is focused on them as well. Try to set aside time for each child. That time might not be equal in duration but it should be consistent and meaningful. Yes, all easier said than done during an acute crisis. But sometimes even short acknowledgements of the siblings’ needs during those times are sufficient. The reality is that some of our families have multiple children with PANS, which can compound the needs of the sibling without PANS. Remember, we are all humans doing the best we can. You are already doing a great job and learning and improving as you go along.
If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today. Some posts have just the facts. Some posts are personal. NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly. Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website. Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.
Gabriella True, NEPANS Board President
Many Doctors. Many Treatments: The long winding road of PANDAS from IVIG to PEX to Rituximab to Helminths
PANDAS diagnosis for two children
The summer of 2010 we moved from Chicago to NC. Days before we moved I had a doctor’s appointment scheduled to have Charlie’s kindergarten physical. That day he received 4 shots, chicken pox, polio, DTap and MMR. Shortly after, things got very dark. Rages that would last for hours and end in crying, begging us for help. Days filled with screaming, crying, kicking, spitting, biting. He lost eye contact. He would no longer let us touch him. He started to wet himself and the bed despite being potty trained for almost 3 years. He became obsessive. He became sensory deregulated; he stopped wearing clothes because he couldn’t stand the feeling of anything touching his body. He could once write his name as well as any 5 year olds, maybe better. That disappeared and he was barely capable of a creating a scribble. He started to have throat-clearing tics. He would cover his ears constantly because he couldn't stand noise; it would make him irritable and angry. He would have meltdowns every time we were in the car, screaming and kicking my chair while I was trying to drive. He stopped playing with other kids. He would stand, all alone in his own world on the playground. He stopped telling us he loved us. Our little boy was gone. While searching for answers, professionals told us everything from this is a reaction to our move over the summer, to bipolar disorder, to oppositional defiance disorder to finally Aspergers. I knew this wasn’t Aspergers, I would have seen signs before age 5. I fought the diagnosis but not without resistance. I was treated like a mother in denial even though I was anything but. After months of searching for answers we finally discovered PANDAS.
We found a PANDAS specialist’s website. When reading the criteria it almost fit Maddie more than Charlie. We made an appointment and flew both of them back to Chicago from where we had just moved. He diagnosed both Maddie and Charlie in November of 2010. Charlie’s symptoms are obviously what led us to PANDAS, but the doctors said Maddie was actually more of a textbook case. Maddie had chronic strep from the age 3 on. Several bouts of walking pneumonia, coxsackie, sinus infections and finally post strep psoriasis which led to having her tonsils out when she was 8. Unfortunately, this didn’t stop the strep; she continued to get it in other places of her body. She had increased anxiety and OCD but no one ever put two and two together. She had irrational fears, would constantly tap things, chewed her sleeve until it would disintegrate, would obsess over all sorts of things and had transient tics. Anytime we addressed her OCD/anxiety with the pediatrician it was dismissed as a phase or a predisposition to anxiety. He told us if the OCD didn’t interfere with school, sleep or friends it was nothing to worry about. So I trusted him. Maddie wasn’t diagnosed with PANDAS until age 9.
My name is TJ, I am a freshman at in High School, and I have PANS. As a school project I have decided to raise awareness of PANDAS/PANS. Contacting my former teachers and their colleagues is only the beginning. As recently as last week, I was reminded how good it felt to talk to other kids like me, I decided to write a book geared towards kids 8-16 – sharing stories.
Most of my teachers were amazing and continue to still support me. However, there were a few teachers and nurses that were, well, mean. They were quick to label me “bad” when I was not “bad” before. My hope and the reason I am writing this is to educate the educators, reminding them that it isn’t always what it appears and sometimes there are reasons. PANDAS/PANS is a physical medical condition with emotional symptoms, (I say my brain has strep).
You are the front line to this, I ask you to help spread awareness. If you see a child – out of sorts… not themselves, save that child - consider that this may be a medical problem, not a behavioral problem. PANDAS/PANS is real – it is not an excuse. My auntie is a teacher and because of my story, in June, told a parent to check into this. Over the summer, this student was diagnosed and came back to school a new person – and will graduate this coming June with honors (he failed and stayed back in 9th grade).
Here is my story. Fifth grade (2009) started like all other years – excited to see my friends, celebrating my 10th birthday, anxious to hear my name to see who my teacher was, but more importantly, to see which friends were in my class. That was my biggest challenge, to be with my friends. There was a lot of craziness with H1N1 and I spent Halloween stuck sick in my house. A few months later, I went to zoo camp – I loved zoo camp – attending since I was 2. On Thursday, Mr. Chris had to call my mom I was under the table and wouldn’t come out. The next few months (well years) were scary. I spent so much time at doctors, hospitals, and programs. I could not attend school – I could not leave my house. I took a lot of different medicines for a lot of different things. I thought I was going insane. Nobody could tell me what was wrong with me, not even my mom. The school department and some teachers were very mean – I would but I was not able to go to school. What I wanted was something I was unable to do. I missed my friends. My mom had to home school me because no one understood what was going on. People push away what they don’t understand.
My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
My Son Bradley was born in 1998 with Down Syndrome. He was and still is everyone's special boy. He has made amazing strides in life and continues to amaze us today. He verbal skills are very limited so he could never tell me when he was sick. It was very difficult figure him out sometimes.
Sudden Onset OCD and TICS
Back In 2007, when he was nine years old, things changed suddenly. He developed behavioral issues, OCD and Tic disorder. Because of his disability, the psychiatrist would blame his Down Syndrome instead of looking further to find the root cause. As a parent you are desperate to help your child with these issues. We decided to try anti-psychotic medications. However, things got worse over time so in 2011 we decided to change doctors because I was tired of all the horrible medications and side effects. We started seeing a pediatric neurologist when he was 13 years old. He was still going to school but we were noticing more sporadic meltdowns and aggression, more panic and tics, The Neurologist diagnosed him with ADHD, OCD, ODD, IED, with possible Tourette Syndrome, GAD, and Panic Disorder. One thing we pointed out to the Neurologist was he had been treated with numerous antibiotics for different surgeries and infections mainly in his sinuses and ears and after those rounds of antibiotics he had wonderful behavior so much so it was like he was a different child. She looked at me like I had two heads and I was the crazy one.
Back in 2005 we were still putting smiling photos on our holiday cards and we still had a tiny bit of free time even with three kids age 5 and under, one of whom was a newborn and another had just been diagnosed with Autism. But come September of that year things really started to hit the fan. In 2004 when our son was diagnosed with Autism and as devastating as that diagnosis was, we thought for sure we had it under control. It was our older daughter who was the mixed bag of anxiety and emotions heading in to kindergarten, though her “crazy” behavior had started years earlier. The preschool teacher had seen the signs but never went as far as to interpret them for us. We do not think she would have called it PANDAS. At that point, I hadn’t even heard the term yet. Fortunately her Kindergarten teacher, who as a PhD in Early Childhood Education, noticed her behaviors insisted there was something wrong – really wrong but did not make a connection to PANDAS.
We took her to several pediatricians and developmental specialists who insisted that her behavior was a response to her younger sister’s birth or her brother’s autism. It was in the course of confirming a piece of information about Autism for my son that we stumbled on the term PANDAS. In its nascent stages of development PANDAS was very new as was the criteria for PANDAS as defined at the time. Our daughter was too young for the criteria, she had too few of the symptoms, she was not anxious enough to have PANDAS were some of the things I heard from the nice people. The not-nice people would not even discuss it.
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