My son, my daughter and I all have Noonan Syndrome. We have what is known as the PTPN11 gene. Our cardiologist diagnosed Kylie with Noonan Syndrome and sent us to the genetic dept. to confirm it. After that, they tested my husband, our son and myself. We thought after getting that diagnosis we had an answer to all the problems we saw occurring but this was not the case. I brought my concerns up with our local pediatrician at the time; he kept blowing us our concerns off because of having the Noonan Syndrome diagnosis and an autism diagnosis. The children are on opposite ends of the autism spectrum. We were referred to neurology after Kylie's recent strep infection and behaviors.
Neurology ordered a 24 hr Video EEG in the hospital, which produced an abnormal EEG. The neurologist told us anyone can have these electrical discharges but that doesn't mean the person will actually have seizure and then they dismissed us. We proceeded to a 2nd neurologist who put my daughter on a tic medicine, which made her behavior worse. She should never have been placed on that medicine because it can lower blood pressure and she has a heart defect. Neither neurologist provided any effective help.
On September 30, 2015, our 4-year-old son woke up a completely different person. He was speaking differently; he had uncontrollable anger and rage. All of his clothes felt itchy, he said. Then he started counting numbers, repetitively; it was non-stop number counting for hours on end. Then he started chewing the inside of his lips raw. We thought it was just an off day, but we knew something was terribly wrong the next day. He woke up the next day with all of the same behaviors as the day before, but this time something else happened. We were eating dinner at the dinner table when all of a sudden, our 4-year-old looked at us and said "Mommy, I just peed my pants on the chair. I didn't even know I had to pee." I knew at that moment something was so terribly wrong with our son, as he had NEVER had an accident since he was 2.5 years old. He wet the bed twice that night, and then woke up telling us that his brain was saying awful things to him and making him feel angry. He also developed a severe separation anxiety and anxiety about everything in general.
Before September 30th, our son was your average 4-year-old, kind, sweet, and outgoing. He loved making friends and going to school. His teachers once told us at parent teacher conferences that he was at the top of his class, morally and academically. He was vibrant and smart and so enjoyable to be around.
I immediately called his pediatrician and she got us right in. She took notes of the behaviors, did some of her own tests, then she called two other doctors in. Each doctor took turns examining our son. After they talked outside of the room, they came in and said we would be immediately admitted to a children's hospital for observation. Something was wrong with his brain, they said. It could be a stroke or a tumor, and he needed to be evaluated immediately by a neurologist.
I remember the first day that I really knew something was wrong with Catherine.
Prior to that, she was a difficult baby. She had difficulty hitting her milestones, was constantly constipated where she would be up all night screaming. No amount of miralax or pear juice seemed to cure it. It was truly hell on earth.
In November of 2015, when Catherine was 1.5 years old, she started with the ear infections. They were constant, and after only a few months, we were referred for tubes. Upon meeting with the ENT, I brought up her speech difficulties, as she was only saying four words, which all sounded the same. She also had a chronic runny nose that would not go away. He suggested Zyrtec and made an appointment for tubes.
Once Catherine had her tubes in, we thought her speech would take off, but the ear infections persisted and she seemed to get worse.
The day I realized there was something wrong with Catherine, she was pushing her baby doll in her baby stroller. Up and down the sidewalk, she would walk her baby. Occasionally, the stroller would get caught up on an uneven part of the sidewalk and Catherine would throw an all-out temper tantrum because she couldn’t get the stroller to move. I would calmly move the stroller for her, and she would be on her way again. But the fact that she did this, at the age of 2, for more than an hour, was alarming to me. Combined with the fact that she would throw these temper tantrums over something as simple as getting caught up in a part of uneven sidewalk alarmed me even more.
You guys, I've got some things to say about anxiety so listen up.
We have had the hardest time getting people to believe that Dallas has severe, debilitating anxiety. He smiles A LOT so he MUST be happy. Like, all of the time...right?
Despite his therapist confirming it, despite his neurodevelopmental pedi & psychologist writing 15+ page reports (each!) detailing his anxiety and it's triggers...even going so far as to note that Dallas uses smiling as a coping mechanism for his anxiety to keep the people around him happy...and noting that his outer expression of emotion/mood rarely matches what's going on inside his head.
Despite all of that...we still constantly hear "But he always looks so happy," "But all of the pictures you post of him on social media look so happy," "But he's so well behaved in (insert whatever situation setting here)," but, but, but.....
Dallas is wonderful, spunky, outwardly happy little boy most days. Especially in a school setting and most social situations.
And the reason that Dallas is outwardly happy is because he's terrified of upsetting people. Of feeling like he's in trouble. Of people not liking him. That's something he deals with every waking moment of his life. And that is A LOT of stress for a 7 year old little boy to have to deal with.
And behind closed doors, when he feels "safe" at home, that stress and anxiety explode out of him. For hours and hours he'll become inconsolable...sometimes appearing to be in actual physical pain from it. And let me tell you, it is heartbreaking to watch.
So why don't you see him upset in the pictures I post? Because I would NEVER betray the trust and safety that he feels with us at home by posting those bad moments for the world to see.
Yes, I have videos. I take them to share with his doctors so that they can see what happens at home.
But unless you are one of his doctors or therapists, you will never see one of those videos.
And if you're still wondering why you don't see him upset in most public settings, well, please go back and read everything I just wrote.
By acknowledging that Dallas feels extremely anxious most of the time, (no matter how his outward expression of emotion may appear), we can all better accommodate him and help him feel more at ease in situations where he may feel especially anxious.
By acknowledging his anxiety, we validate his feelings and can then help him to better work through them.
Now does all of this mean that Dallas never feels happy?
There are certain situations where Dallas can really let go of his stress and just feel happy. Most of the time those situations include art, animals, music, and RUNNING. Dude loves to run! So we try to include as many of these types of activities as we can into his day to help him feel more regulated.
I'll stop ranting now and just leave you with this...Just because you can't see a person's inner struggle does mean that it does not exist. Period.
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.
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