School can be a dirty word when it comes to PANDAS/PANS. Or it can at least be preceded by a few choice words whenever it’s discussed. This “PANDAS School Daze Series” will hopefully provide some good tips on making the school year a bit easier. Lesson 3: Impacts on Learning.
Why Should Schools Care About PANDAS/PANS?
I could make this Lesson very short by saying PANDAS/PANS can impact EVERYTHING about learning at school. Period. The End. LOL! I’ve gotta feeling this Lesson is going to be very long. Let’s start by about why schools even need to care about PANDAS/PANS. (The reasons were listed in PANDAS and School.)
Basically, you have a long-term, pediatric illness that will likely span multiple grades. PANDAS/PANS can have a sudden onset, and typical symptoms (OCD, Tics, ADHD, Rages, Sensory, Etc…) can and most likely WILL affect the classroom environment. Some PANDAS/PANS symptoms may seem behavioral despite having a medical cause (BRAIN INFLAMMATION!). There can also be a decline in academics (especially in math and handwriting), which may be seen as laziness or lack of trying versus a symptom of an illness. Plus, in some cases, it can take YEARS to diagnose PANDAS/PANS correctly, which means a child could be undiagnosed or misdiagnosed and treated for other conditions. And other students may not understand what is happening to their classmate, and the child may suffer socially. Plus, there is the close proximity to germs passed around at a school. So your child may be constantly exposed to illnesses that can keep the PANDAS/PANS symptoms present. And all of this assumes the child is even well enough to attend school.
Honestly, the child’s school needs are likely going to be obvious. The biggest issue might be if you can get the school to look past any behavioral and academic issues to address them as symptoms of PANDAS/PANS BRAIN INFLAMMATION! You could even have a PANDAS/PANS child that can keep it together at school but then LOSE IT as soon as they get home. The school may not understand why you are always checking on behavior or asking for no homework accommodations. Or possibly the PANDAS/PANS child has OCD rituals in getting ready for school that makes them late every day, but they’re fine once they get there. Or the behaviors are under control but test anxiety or perfectionism or loss of skills is causing a marked decline in academics. And exposure to germs could set off a PANDAS/PANS reaction and symptoms that happen “for no reason” at school. The point here is that each child’s going to present symptoms differently when it comes to school.
In writing about PANDAS/PANS and School, I wish I could come up with something that would make Educators finally have a “Eureka!” moment with our kids. I honestly don’t know what it will take. I do wish I had all the answers. We shouldn’t have to PROVE that our kids have an illness. Ugh. But with so many doctors not even knowing how to recognize or diagnose or treat PANDAS/PANS despite all of the medical journals, educating the educators is how we have to roll for now. We can talk to our children’s individual teachers/schools, reach out to local school districts, and contact state level education leaders. The upcoming PANDAS/PANS Awareness Day on October 9, 2014 is a great opportunity for you to send information to educators in your state.
And it could be problems at school that has even led you to look at PANDAS/PANS. School issues were a driving force for me to find the REAL CAUSE for the issues when my son was in so much trouble every day during his second half of kindergarten. Or your child may have a PANDAS/PANS diagnosis but you find yourself in a meeting to determine whether or not they are even eligible for help. If they are do have an IEP/504 Plan, then you hope all accommodations are followed in the classroom(s). And Free Appropriate Public Education (FAPE) requires schools to help/accommodate these children (IEP, 504, Etc….).
There are definitely many ways PANDAS/PANS and affects a child’s school career. This applies whether the child can attend school or not. Lesson 2: Symptoms at School listed Let’s consider these specific areas where PANDAS/PANS impacts learning: Behavioral, Academic, Attendance, Social, Medications/Treatments, and Stress Levels.
Impacts on Behavior
The nature of PANDAS/PANS symptoms mean that they are usually going to be noticed in the classroom. You may have a child with multi-faceted OCD and some obsessions or compulsions could be focused on school topics. Or the child may suffer from perfectionism or “just right” tendencies. Tantrums are not well tolerated above the age of three. (My son had more tantrums at age six than he ever had as a toddler…thanks to PANDAS.) And rages are a whole different matter and can be labeled Oppositional Defiant Disorder/ODD. Tics can be motor or vocal, and either type of tics can be bothersome or disruptive and misunderstood. Anxiety can come in many forms, and it’s hard to explain why your 10-year-old can’t bear to be separated from you to go to school. ADHD symptoms may affect focus and keep work from getting done. There’s also physical symptoms like urinary frequency, sensory issues, balance issues, visual disturbances, etc…. Each PANDAS/PANS child will be affected differently by the brain inflammation they experience.
It seems obvious that BRAIN INFLAMMATION will cause a child to act differently. (DUH!) But it is understandably confusing when a child is fine one minute and then certainly NOT FINE the next. It may help explaining that PANDAS is an infection-triggered autoimmune condition, and the activities of the immune system are invisible. That the child is very distressed when they are experiencing PANDAS/PANS symptoms. And certainly the behaviors do need to be addressed, but trying to understand what might have caused the behaviors or SYMPTOMS is also important. Are there are known strep infections going around the school? Could the child have been stressed about other activity in the classroom? Was there a fire drill that day? This is asking the school to play detective a bit, but it’s not much more than banning all nuts when a child has a peanut allergy or reminding a child with diabetes to monitor their glucose levels. A PANDAS/PANS child’s MEDICAL illness is as important as any other students even if it may seem more complicated.
Sharing the Moleculera Labs’ “About PANDAS/PANS” video with the school can give technical info about the MEDICAL condition and explain symptoms and its effects on the child.
PANDAS Network’s School section has great information. Check StrepMonster as a great source for other YouTube videos and PANDAS/PANS web sites. I post current articles and news stories on the PANDAS Sucks Facebook Page. Providing news articles/videos with PANDAS/PANS examples outside of your own family can help take the attention off of your child. It shows schools that PANDAS/PANS is more common than they may think (it’s not just your kid!), and it may help them recognize the condition in other students.
(NOTE: I am not saying that every time your child acts out that it’s going to be PANDAS/PANS. They’re kids. Kids act out for many reasons. But being able to determine if whatever they’re doing is a PANDAS/PANS reaction is helpful. TRUE STORY…last month, my son’s teacher called me two days in a row about a few issues Jesse was having in the classroom. I even had to go pick him up one day. Eek! Jesse had a very slight fever, so I took him to the doctor. Rapid strep test was negative, but we sent it to be cultured too. I was considering allergies as a potential culprit…made sense. Then…later that night, my husband was diagnosed with a virus that, in hindsight, had been brewing all week. BINGO!!! Mystery solved!!! Does that mean Jesse is exempt from his poor behaviors at school? NOPE! He still needs to learn how to behave and had a few punishments at home. BUT it did made sense to me that his exposure to a known illness was possibly playing a role in the issues. But still…no TV for a week, Dude.)
The National Institute of Mental Health/NIMH lists “Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas” as a possible symptom or PANDAS/PANS. That should be enough. But it always feels like we’re trying to build a case as to WHY our kids are impacted…by BRAIN INFLAMMATION! Geez.
It is known that PANDAS/PANS can impact math skills (cognitive ability, memory), handwriting(fine motor, visual-spatial), art (fine motor, visual-spatial), spelling (memory), creative writing (cognitive ability, fine motor), test taking (anxiety, cognitive ability, memory). Really any subject in school can see an impact. Try studying weather in science with a child that has an irrational fear of thunderstorms. And most schools will use tests or skills checks to monitor academic progress. Add ADHD to the mix or Perfectionism OCD or motor/vocal tics that impact concentration or urinary frequency that keeps the child running to the restroom… the list goes on and on. Executive Function impairments add even more to the mix and may keep a child disorganized, unable to make simple decisions, and running late. The impacts PANDAS/PANS can have on Academics should be obvious.
When grades start dropping due to their MEDICAL condition, a PANDAS/PANS child can miss opportunities that they should be getting. Depending on what grade a child develops PANDAS/PANS, some building blocks for learning may be more difficult or missed altogether. It can impact class selections or scholarships. And test anxiety during skills examinations or college prep tests can be bad. Anecdotally, a lot of bright or gifted kids have PANDAS/PANS, which is hard to see when your child can’t do simple multiplication or spelling and their grades are dropping.
And Homework can definitely be a four-letter word, but especially for a PANDAS/PANS student. This is another definite Academic Impact. Maybe your child can keep it together at school but falls apart at home where they’re more comfortable and don’t have an audience of their peers. Homework can be a battle. They can’t focus. They erase and erase and erase their paper due to perfectionism. Their ADHD keeps them fidgeting. They are ticcing all over the place. Their particular flavor of OCD has a hold of them. Really any PANDAS/PANS symptom could interfere with a child doing his/her work. But the homework keeps coming every night…unless you can work out an accommodation that reduces/removes the homework load. Even with a special education plan in place, you have to rely on the teachers adhering to it and not penalizing the student anyway. (Or go to a Montessori school like my son’s that only assigns a half an hour of reading and math fact review every day. There are a few special projects here and there, but really no major homework right now in elementary. It is NICE! 🙂 )
It might help to have some articles that help explain PANDAS/PANS impacts on our kids to shove in the faces…I mean…politely give to teachers and school personnel. You can always check for article links on my site or on PANDAS Network. A good Google search will also provide many examples. Here are a few that might be useful (no shoving in faces though! 🙂 ):
- Autoimmunity and the Basal Ganglia: New Insights into Old Diseases (Wikipedia: Basal Ganglia has general information too so you can discuss the brain like a pro.)
- Clinical Factors Associated with PANDAS (Check out Table 2, which lists “handwriting deterioration” in 29.3% and “deterioration of school performance” in 24.4% of kids in the study. Dramatic onsets and flares are also mentioned.)
- Neurocognitive Functioning in Youth With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcus (Study evaluated neurocognitive functioning in (PANDAS) youth and their OCD symptoms. It found “marked impairment in visuospatial recall memory…and other neurocognitive measures.”)
- Comparison of Clinical Characteristics of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Childhood Obsessive-Compulsive Disorder (Check out the tables and especially Table 4! It lists out symptoms and shows that the subjects had an “88.9% decline in school performance”…other relevant symptoms.)
- From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) Dr. Susan Swedo’s 2012 article that introduced PANS and has “deterioration of school performance” listed as a symptom. You can also find PANDAS Information on the NIMH site.
And even if your PANDAS/PANS child does not have an issue academically, that should not rule out having an education or health plan at school. Accommodations could still be put in place to help with attendance, homework, and certain symptoms. You would work with the teachers to determine how PANDAS/PANS symptoms affect aspects of your child’s school performance.
Kids can be cruel. Period. (Some adults can be cruel too!) Bullying is a real thing. Teasing words can hurt. PANDAS/PANS kids’ self-esteem can suffer from any behaviors they exhibit at school. And if their academics suffer due to their brain inflammation interfering with their schoolwork, then even more suffering. People may misunderstand their symptoms, tell them to “just stop” or nitpick deficits instead of celebrating achievements. Some PANDAS/PANS kids are even accused of faking symptoms at school. (Sigh.) It may be difficult for PANDAS/PANS kids to make friends. It is also easy for PANDAS/PANS children to lose touch with their buddies if they are absent a lot or on homebound instruction. Extra-curricular activities may be limited by their medical condition. The PANDAS/PANS kids might miss some typical school age “rites of passages” that many families take for granted.
And let’s face it, PANDAS/PANS can have an impact on the child’s relationship with his/her teacher. When a student has tantrums, gets fixated on things, has poor impulse control, exhibits other PANDAS/PANS symptoms sporadically (or constantly), has a drop in grades, and demands a lot of one-on-one attention…yeah, THAT kid is probably not the teacher’s pet. So much of PANDAS/PANS can seem like defiance at the worst and terrible manners at the least. When a child is expected to misbehave, s/he rarely disappoints. Add to that a worried parent that is always calling or emailing or meeting the school, and that’s going to have an impact too. I know that before BEFORE PANDAS hit, my son was being celebrated for his writing, spelling, reading abilities and was nominated for the pre-gifted program. By the end of the second semester, he had many comments about behavior issues in his planner, and my sole goal was to keep him from getting suspended…from kindergarten. Granted we didn’t know it was PANDAS/PANS at the time, but I just wanted that awful school year to be over. But some teachers really do give a lot of chances and are very caring. Once educators understand what is happening, they can be a great ally for your PANDAS/PANS child’s health and well being.
And while I’m at it, being the parent of THAT child is not easy either. People will misunderstand PANDAS/PANS as a MEDICAL condition and possibly judge your parenting skills. You are likely going to get the “pleasure” of having many meetings with school personnel. There are Mean Mommies out there too. It is not a fun position to be in and balancing your professionalism with advocacy for your child and your emotions as a frickin’ human being can be difficult. Give yourself a break and know your child’s rights. (And those Mean Mommies weren’t really your friends if they dropped you just when you needed them most.)
But I do want to say that some schools are awesome and will definitely work with you. If your school is not accommodating to meet your child’s needs, look for one that will. Or get an advocate if you need help navigating school meetings. Hiring an attorney is also an option that some PANDAS/PANS families have had to use.
School refusal can be a difficult PANDAS/PANS symptom to handle. You want your child to be safe and learn while they’re at school. If you are having to force them through the front doors, what kind of learning is going happen? Anxiety levels about getting ready for and attending school can also cause your child to be late, and tardiness gets added to absences and can lead to truancy charges. PANDAS/PANS symptoms could include absences due to school refusal, anxiety, fears, extreme symptom exacerbations. Even treatments and doctors/specialists appointments may keep a child from attending school.
Schools should NOT punish chronically ill children for missing school (see this Wrightslaw article). If your child a PANDAS/PANS diagnosis, you can possibly get an attendance accommodation in an education plan, or work with your doctor for excused absenses/tardies. At the end of Jesse’s kindergarten year, I had some open doctor’s excuses notes that I used to pick him up half day. He wasn’t diagnosed with PANDAS at the time because the doctor had already told me NOT PANDAS (grrrrrr!!!). We were working with his anxiety misdiagnosis though, and the doctor at least understood that school was not a good place for my son at the time.
Sometimes a PANDAS/PANS child may need to withdrawal from school for homebound education or even homeschooling. School may not be the right environment for them, or school refusal may be very strong. Health and healing takes precedent. Kids can learn later when they’re better…their health is more important. And don’t worry…the PANDAS/PANS kids DO learn during homeschool or homebound when they are able. I homeschooled my son Jesse for THREE years, and he re-entered school at the appropriate grade level for his age. I am thankful that I was able to give him that time to heal away from a school full of germs. I truly believe that homeschooling made a HUGE difference in my son’s healing/recovery.
In her book Childhood Interrupted: The Complete Guide to PANDAS and PANS, Beth Maloney writes about “Educational Impact” in Chapter 6. Per Maloney, “There is a time for children to go to school, and there is a time when they need to stay home. If your child is desperately ill, can’t make it out the front door, has stopped eating, won’t bathe or change his clothes, and is otherwise struggling on a daily basis, then school may not be the best place for him.” I agree with her 1,000%
Impact from Medications and Treatments
Your child may be on various medications or supplements for PANDAS/PANS (and possibly other health conditions too). There are many different treatment protocols that may be used (antibiotics, steroids, IVIG, anti-histimines, etc…), and they all can have side effects…any medication can. Additionally, some families may choose to keep a child home after IVIG treatments for added time to protect a child’s from getting sick. And after IVIG, some kids experience a “turning back of the pages” when past symptoms may re-emerge full force and make school attendance impossible. The same type of symptom revisits may happen with homeopathic treatments. Some PANS children have Lyme Disease or multiple infections/viruses which may require a full regimen of multiple medications, supplements, and immune system supports.
It is important to note any bothersome or disruptive side effects and discuss them with your doctor. This is especially true when you are adding something new, which you may want to do on a weekend if you are worried about a severe reaction. It could be that a dosage may be changed, or a new medication may be ordered. Sometimes just changing the time of day that a child takes their medicines (i.e with dinner instead of with breakfast) may be enough to reduce any side effects causing issues at school.
Another educational impact from medications/treatments could be time out of class to go to the school nurse to take medications. A child may even have ibuprofen in the school office that s/he takes if there is an obvious need for its calming effect as an anti-inflammatory. Making sure your school nurse and teacher(s) are aware of any new medications and possible side effects is also important.
Stress Levels — Necessary Moments of Zen
I believe that PANDAS/PANS kids have a real need for a calm, peaceful learning environment. Stress can open the blood brain barrier (BBB), possibly due to the release of epinephrine (click here and scroll down the page for BBB info). If the BBB opens it can be the start of a PANDAS issue if the autoimmune reaction is present in the child’s body. Being able to self-soothe to get rid of negative emotions is a skill even some adults don’t have, let alone a chronically ill child with BRAIN INFLAMMATION. If the learning environment can be kept fun, friendly and as stress-free as possible, then it’s also going to benefit the entire class and not just the PANDAS/PANS child.
And yes, the PANDAS child may sometimes be the cause of some stress/chaos if s/he is exhibiting symptoms beyond their control (tantrums, rages, fixations, OCDs, tics, etc…). It could be that the PANDAS/PANS child could have a way to leave the classroom to go to a quiet space or to the school counselor’s office. But keeping things calm in the classroom can possibly reduce any outbursts from the PANDAS/PANS child. (I’ve taught Jesse some breathing techniques to use when he’s becoming upset. We also use a few meditation/mindfulness techniques at home sometimes. Finding Jesse some Zen is a current mission of mine, and I’m sure you’ll be hearing more about it later. 🙂 )
The impacts of PANDAS/PANS on a child’s school days is clear. I also want to share some firsthand experiences from parents describing various aspects of school for their PANDAS/PANS kids. The quotes are from a survey I did back in June/July. You can read the Impact PANDAS/PANS is having on these children.
“It was the transition to school that became the most difficult due to an extreme phobia of vomiting.”
“She refuses to tic at school, so at the first hint of OCD, and/or movement disorder she comes home.”
“Math seems profoundly affected.”
“She hid the symptoms at school for the most part, but began to have social issues with friends, anxiety, school refusal. When the physical ticcing became obvious, they became more understanding.””School was always the worst [for PANDAS/PANS symptoms].”
“The first thing we noticed was a sudden refusal to attend school. SUDDENLY, overnight, my daughter had panic attacks in the morning before school. She would take hours to get ready; always missing the bus but not being upset that she missed it nor aiming to be ready on time. We began fighting with her everyday to get her there on time. She started running out of the house to get away as opposed to being ‘forced’ to go to school. Just days before she was an honor roll student, competitive dancer, cheerleader and popular among peers and teachers – she loved going to school. She also became very particular about what foods she would eat. Several months later she had a tonsillectomy because her tonsils were severely pitted and infected from multiple strep infections. SUDDENLY, after the tonsillectomy she was worse. She dropped out of cheerleading and dance, obsessed over everything, couldn’t leave the house, had incredible anxiety and started cutting herself. We didn’t know she had PANDAS so therefore she wasn’t given antibiotics prior to her tonsillectomy and the strep was further infused into her brain. She couldn’t go to school.”
“Because my child was so high functioning at baseline (above average executive functioning and unusually high motivation to achieve at the very highest level), while personally very troubling, these relative difficulties went largely unnoticed.”
“She does not go to school currently. When she did attend school, when she felt the symptoms return so immediately told us and would not return to school until feeling well again.”
“My child was always very careful to hide all symptoms from teachers and peers (though a careful eye, had there been one (there wasn’t) would have been able to read the situation.”
“Refuses to do school work – reading, writing, math.”
“My son went from an honor student to a kid that couldn’t walk into the school building because of the anxiety and hallucinations. At home he couldn’t take a shower because each droplet felt like he was being hit by paintball pellets, touch of water and clothing felt painful, he could not brush his teeth due to the sensory issues, he also could not eat many of the foods he once loved as they were causing sensory issues of slime and gag reflex. Nothing tasted right, his tongue felt furry, Also noted was he tried out for soccer team to a kid that walked like a 90 year old carrying a barrel. The Neuro/Psych said he was fine…just depressed but no reason for any depression as nothing bad happened. His heart rate and blood pressure was all over the map too. Did see specialist for heart and all they said was eat more fiber and exercise more.”
“We tried to get a 504 plan in our public school during 6th grade. They accused my son of faking his illness to leave the classroom. He had documented panic attacks in classroom since onset in 3rd grade. Also had diagnosis in writing from [Hospital], [PANDAS Specialist], and a psychiatrist. They bullied us and our son right out if the school. Chose cyber school.”
“Difficulty with multi-step tasks [in school work]”
“Very poor impulse control [at school].”
Remember that YOU are in charge of your child’s education…and his/her health needs to come first. You have the right to do what you feel is in the best interest of your child and your family. It is clear that PANDAS/PANS children need a lot of compassion and care from teachers and school administrators…all kids need that.
Next up in the PANDAS School Daze Series, we’ll talk about why schools need to care about PANDAS/PANS and how the condition may affect child’s educational career with Lesson 4: Real Strategies to Use. You might also like Lesson 1: Talking to the School and Lesson 2: Symptoms at School.
P.S. Is there a specific school topic that you would like to see me cover? Do you have some great PANDAS/PANS school tips to share? Want to share your own personal PANDAS School Daze story? If so, send me a message, and we’ll do what we can to give you the info you need and want. I’m sure we could also easily do a special School Edition of “Your Words: PANDAS Sucks Because….” (Click below to submit your reason PANDAS Sucks when it comes to school.)
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.