When our older child went back to school last fall, after we'd gotten her diagnosis and been slowly treating for a few months, I was heavily conflicted about her next steps.
I wanted her to move on, and have a space she could be her own person and reinvent herself after dealing with so much. I wanted her to be able to leave our home, that we were still finishing work on, and be in a safe environment for half of her day. She is highly academic, and I wanted to allow her to gain enrichment that she craves.
But I was afraid of leaving her, this child that had been through so much, with teachers and staff that just didn't understand the complexities of what she'd been through.
This fucked up world where my older child faced too much over a year and a half.
She had such a "normal life" until COVID hit the US and I hit my health "rock-bottom" within the same month.
The Hardest Year and a Half Imaginable:
1) Suddenly everyone was wearing masks, and fear was running rampant in society
2) Because COVID was everywhere, we had to try and explain it to our children in a non-terrifying way and balance hygiene with media induced germphobia
3) All social connections to friends or events was cut off without warning, and we have no extended family living in town to interact with and visit. We were isolated as a nuclear family for at least a year and a half.
4) She and her sister weren't allowed to go out into public spaces for at least 8 months, and after that it was only on urgent errands I had to do while their dad worked- they couldn't stay home with him
5) Her younger sister and her father were her only "normal" constants
6) Her mom was bedbound and sick with an unknown illness that completely changed her personality and all of her abilities, and with no idea of when or how she'd recover
7) Once her mom's condition would be discovered it meant that half of her home would be sealed off, torn apart down to the studs, remediated and rebuilt- for half of a year we would live without a kitchen, dining room, rear stairwell, and a basement. For 1.5 months of that we were without heat in our home, in Buffalo NY where in snowed during that time.
8) At least half of her worldly possessions and special things needed to be thrown away without warning
9) She'd get her own large bunch of debilitating systemic symptoms, most which were mental but she had plenty of terrible physical ones
10) She'd come to be diagnosed with PANS, mold illness, high amounts of Candida, and being exhibiting autism-like symptoms of other kinds.
11) We didn't have enough money to afford to replace many many things for a long time, and we didn't have enough money to try and go do experiences out with our children.
We had to stay very frugal all of the time and get very creative with our meager resources left.
12) She'd be forced to be patient and hold out hope these all of these things were temporary issues and that I was going move goddamn mountains to get myself and her well again, and that COVID would eventually move past epidemic status and mutate enough that it wouldn't be a horrifying health risk to us anymore.
And after all of that happened, somehow she did always stay positive, hopeful,
and continue moving forward- never looking back, never saying "why me" or feeling sorry for her situation.
During this time, not only did she take care of herself, but looked out for her sister, and played with her and taught her things, and even cared for me on illness or recovery days when I was too ill to function as a mom needs to.
I cannot believe that she has been through so much by 6 years old.
Our kids are so fucking resilient.
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So the idea of "moving on" to her returning to school was an easy yes (in idea) for our family....
We were excited to finally give her a chance at a "normal childhood" again after we'd been through Mold, Remediation, PANS, co-conditions, and COVID at the same time.
It had been a monster of a year and a half. We wanted her to just be able to life her life.
....but at the same time it felt like a moderate "no" (in feasibility) to me as: a parent, mold ill person, and previous teacher myself.
Each of these aspects of my experiences influenced my thoughts in a variety of ways. I had:
Parent Thoughts:
1) Was the school actually a safe environment? What sort of protocols did they have in place for COVID yet?
2) Was there mold in the school?
3) Would the school know about PANS/PANDAS?
4) Would they truly accept that my child has severe medical conditions that can wax and wane without warning?
5) Would they know what to do about her symptoms?
6) Would supporting my child at school be too much of a burden?
7) Would my child be emotionally and physically okay without me after all the shit she's been through?
Fellow Moldie Solidarity Thoughts:
1) The fatigue and exhaustion I face daily while being sick and recovering is unlike anything I could accurately explain to another adult- can my child even handle a full busy day at school with her fatigue?
2) What about the giant multitude of complex symptoms that you cannot verbalize adequately- Will she be able to communicate effectively when symptoms happen?
3) Will her symptoms be too much for her to be able to focus and participate in school?
4) When I push myself too hard, I crash. I'd seen this in my child over the summer occasionally when she begged to join soccer. Was putting her in school where she'd be physically active and pushing herself again going to be a set up for a collapse?
Teacher Thoughts:
1) I would want to know this child's illness and history if the family offered to provide it. Education helps us stay proactive, and proactive teachers are more effective in my experience.
2) I would want to problem solve ahead of time for possible scenarios that could arise in the classroom that might trigger the illness or make it worse; this would involve a lot of research about the medical conditions present as well as their typical presenting symptoms and conditions that allow for presentation. I would also want to know about the symptoms that this child in particular presents so I could have warning signs that something is "off".
3) I would want to create an action plan for the child in writing with other staff and school admin.s and the child's family included so that the child's best interests were represented and that I would have a solid plan for what I need to do for this child.
Having these plans written up would also protect me as a teacher because I would follow the plan to the best of my ability, and should something not be working, I would know that I could reference the created agreement and how I'd been following it.
4) I would want open and continuous communication with the family, and know that I have their support in trying my best to accommodate and teach their child in my classroom.
I racked though my brain for a while and ultimately because we knew we still had work to do on our environment, getting our kids out of the house to lower their possible exposure to any mold left in home won out.
I signed both of our children up for school.
(Yes, even my pre-K'er, which felt like a knife in my heart because I was finally beginning healing and was a teacher by trade- so I wanted to selfishly keep her with me to try and reclaim one last year at home together whereby I could make up for the lost time I felt like she missed out on having a "cool fun mom".
I wanted to make up for all of the academic and emotional learning I felt like she missed out on while I was clawing my way through mold illness and initial remediation. The learning her older sister largely had to supplement for me.
I wanted to make up for feeling like a failure of a mom to her for 2 of her 4 years of life. I felt like she probably didn't remember what I was like when I was "healthy" and I wanted to have more time with her alone to show her that.
But in the end I realized I was doing the absolute best I could,
and that we all were making it through everything together so far as a tight knit loving family- so that was an absolute success.
I needed to think about her safety and wellness, not my own selfish wants; I sent her to our local public pre-K.)
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How did I help my PANS/PANDAS child get prepared for attending school?
1) Before I sent my older PANS child into her school, I created supportive materials for her teachers and school nurse to use.
These things are Referenced in an older post here:
and also here
***I'm going to be doing a video talk/podcast about these items soon with Malachi's Message, and I will post again when it is out.
2) I spoke privately with the lead teacher for about a half hour at our child's open house about PANS, Mold Illness, and what she may expect with our child. I offered to come in a teach students in class about PANS, should my child's differences and needs become to prominently noticeable. I was assured that at her school, the motto is "Every Child Gets What They Need" and our child would be well taken care of.
I was super elated when the teacher asked me if I could talk to her about mold and mold illness at a later time, and also PANS because it was already igniting in her a desire to use new knowledge for current and future students who present complex symptoms and behaviors. (That was an amazing moment for me, I am Always beyond Floored when someone wants to learn more, or talk more about these things. Teachers in particular, because the earlier these things are caught in kids, the earlier that they are treatable and also -generally- the less intense the illness can evolve.)
3) I brought in the new PANS/PANDAS Flare Journal, Companion Notebook, and the Sensory Bag as supports and tools for the teacher and my child. I wanted her to be able to make it through school successfully without me. I wanted the teachers to feel knowledgeable and supported.
4) I spoke with the principle and offered to come in and present to the staff on PANS/PANDAS and Mold Illness as well. They appreciated the offer but were on a strict lock down due to COVID and weren't allowed to have any parents in the building for any reason. I'm presenting this again when restrictions anticipatorily let up next fall.
5) We also had an IEP/504 Meeting with the School's Principle, my child's lead teacher, myself and my husband. Sometimes medical professionals may be asked to come to these meetings, but in our case we'd already had a lot of intervention successes due to: the flare journal, companion notebook, sensory bag, and constant communication and behavioral management strategies set in place by the teachers and myself. Having medical professionals or therapists wasn't necessary in our case this year, but it could be for your child if you are looking into making an IEP or 504 plan.
6) I made sure to forward all medical records pertaining to: PANS diagnosis, Mold Exposure, Mold Illness/Toxicity diagnosis to the school. They needed these on file as part of the IEP/504 agreement.
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IEPS and 504s:
(A simple video to help explain, if you don't want to do all the reading below.)
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Learn about IEPs:
IEPs are developed by a group of professionals at school. One member of this IEP team typically acts as a case manager and oversees the IEP. You’re part of your child’s IEP team, too. That means you’ll be involved in the process as the IEP is made.
The IEP team will use the results of your child’s evaluation testing to design the plan. The scores show the specific areas your child struggles with. Having that information allows the IEP team to provide the individualized instruction and supports your child needs.
If your child has had a private evaluation, you’ll need to work with the school to use the results as it develops the IEP.
One of the biggest decisions the team makes when creating an IEP is what type of learning environment your child will be in. Schools are required to place students with IEPs in the least restrictive environment. Most kids with IEPs spend the majority of their day in class with their peers. This is called an inclusion classroom, or a general education classroom that includes students who receive special education.
What’s in an IEP
There are many terms in an IEP (and in the entire IEP process) that will likely be new to you at the start of your journey. Just know that you can go to the IEP team at any time with questions about terms or concepts in the IEP.
Seeing your child’s IEP for the first time can be intimidating and confusing. Understanding what you’re looking at can help you ask the right questions about the services and supports your child is getting.
Here are some of the things the IEP will include:
Your child’s present level of performance in school (PLOP)
Individualized instruction and related services, such as occupational therapy
Supports like accommodations and assistive technology
Explore lists of classroom accommodations for kids with learning and thinking differences.
Get examples of assistive technology for reading, writing and math.
Find out whether IEPs cover extracurriculars, and if they can include self-advocacy goals.
Spotlight on IEP goals
IEP goals set the bar for your child’s level of improvement for the year. The purpose is to chart how much progress your child is making with the services and supports being provided. IEP goals should be SMART — Specific, Measurable, Attainable, Results-oriented, and Time-bound.
Learn more about SMART IEP goals here:
In traditional IEPs, goals aren’t related to what other kids at that grade level are achieving. So, a child can meet the goals in the IEP, but still not be performing at grade level.
Some states now use standards-based IEPs. With these plans, goals are based on academic state standards. A child’s improvement is measured against what other kids are doing at that grade level. The purpose is to help close the achievement gap.
Ideally, your child’s IEPs will be strengths-based. This means the annual goals look at your child’s strengths and then find ways to use those abilities to work on weaknesses. This approach isn’t widely used yet, but you can always ask the IEP team to consider your child’s strengths when setting goals.
If you disagree with what’s in your child’s IEP
Your role in creating your child’s IEP doesn’t stop once the plan is done. In fact, it’s very important that you go over the IEP carefully and make sure it has everything it should have, and that you agree with what the school has proposed. Learn what to double-check in your child’s IEP.
Even after working with the IEP team, you may not agree with everything that’s in your child’s IEP. If that happens, you can decline the IEP and negotiate changes with the IEP team. If you still haven’t reached an agreement, there are other types of dispute resolution you can turn to.
You may be reluctant to disagree with the team about your child’s IEP. But it’s a fairly common situation — for both parents and schools.
Preparing for what’s next
Once the document is created, you’ll go over it with the IEP team. Assuming you’re all in agreement, the plan will be put into place and your child will start getting the services and supports in the IEP.
All info on IEPs taken from:
What is a 504?
The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.
Subtle but Important Differences
Not all students who have disabilities require specialized instruction. For students with disabilities who do require specialized instruction, the Individuals with Disabilities Education Act (IDEA) controls the procedural requirements, and an IEP is developed. The IDEA process is more involved than that of Section 504 of the Rehabilitation Act and requires documentation of measurable growth. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document is created to outline their specific accessibility requirements. Students with 504 Plans do not require specialized instruction, but, like the IEP, a 504 Plan should be updated annually to ensure that the student is receiving the most effective accommodations for his/her specific circumstances.
You will monthly, quarterly, semi-annually, or annually review your child's IEP or 504- and yes you can switch between plans as conditions warrant.
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Does my Child Need a 504 or an IEP ?:
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What's in my Child's 504?
The following is a copy of what I created myself and sent in to the school as far as my considerations for my child's 504.
They asked me to provide an outline of some ideas they could use for creating accommodations:
"12/16/21
_________________ School Staff,
Today I met with CHILD’s doctors and come up with information and interventions for a 504.
CHILD's medical diagnosis is PANS resulting from severe mold exposure/mold illness.
The child is currently working on recovery with DR. ______________ , (an Environmental Illness Doctor/Immunologist/Allergist), and Dr. ______________ (her pediatrician). Ped. has expressed that we are to follow medical instruction about PANS, mold illness, and candida from Dr. _________________ as they are not as knowledgeable on those topics.
Here are some School Considerations:
Whenever a "flare" or trigger presents at school, if possible, please have child use their PANS/PANDAS Flare Journal in order to track symptoms and triggers from their own perspective.
If they strongly refuse to, that is acceptable. However, any information they share form their perspective is valuable and efforts to try to gain information from the child is important for parent and teacher understanding.
For Obsessive Compulsive Disorder Symptoms or Anxiety:
1) Assess the nature of behavior (what, when, where) and brainstorm possible solutions; parent is on board with developing coping strategies and suggesting ideas that may help.
For Sensory Overwhelm or Anxiety:
1) Extra time to transition or allowing child to change clothing as needed if sensory issues with clothing fit/texture arise or if clothing gets wet.
2) If covering ears/eyes/complaining about too much sensory input or balling up/fetal position- try removing layers of sensory input (these could be too much: light, sound, movement, physical/verbal interaction with child)
Organizational Support
1) Preferential/assigned seating near children she emotionally/socially connects with (if possible) for classroom management ease of potential triggers of: miscommunication or stressful social interactions.
2) Home/school communication system- any of the following are useful for communicating with the parent:
-PANS/PANDAS Flare Journal and Companion Journal
-Phone call
-Class Tag
-Child's school email communication
-In Person Communication at Pick Up
Attentional Supports
1) Directions: clear, concise, and written, if possible, for lengthy assignments. Too much/complicated auditory information at once can overwhelm child.
2) Offering a structured classroom area for calming down/self-regulation
3) Have available a sensory bag with materials for sensory stimulation/sensory seeking behaviors, and for calming down child.
4) Child has fatigue associated with mitochondrial dysfunction and also post-exertional fatigue. During physical activities (outside/gym class), opportunities for breaks may be needed.
5) Child is often dehydrated due to low ADH levels from mold exposure and mold illness, please allow her to re-fill water bottle and drink as needed.
6) Child often suffers from constipation from taking binders and stool bulking agents to remove mycotoxins from her body. Please allow her to use restroom as needed to void BMs and urine. Any BM or urine back up has the potential to re-circulates toxins throughout her body causing her pain and PANS symptoms to flare.
Medical Supports
1) Please communicate with parents of child whenever a "close contact" child in class presents ill with a viral infection or bacterial infection as both can trigger a PANS response in - even if CHILD doesn't get ill herself.
2) Please communicate with the parents of the child if mold or mildew (which is mold) is found in a school space where CHILD spends time.
3) Be aware that any viral illness, bacterial illness, or mold exposure will trigger a PANS response in child.
4) Be aware that emotional stress or physical stress can also trigger a PANS response in child, (however these are rarer.)
5) CHILD is on a doctor-prescribed diet: gluten free, low or no dairy, low sugar content. These are not items she is allergic to, nor will they hurt her if she ingests them; however, they are to be avoided in order to help with mold colonization as well as candida overgrowth in her body. She is to bring lunch and snacks to school daily with pre-approved foods assigned by Dr. ______________. In case of school parties/holiday parties, please allow child to choose snacks(s) from pre-approved treats her parents have sent in. If unsure if child should be eating something, please defer to her judgement, CHILD is very knowledgeable about what foods help her body and which she shouldn’t eat.
If a minor PANS flare occurs it is recommended that the staff attempt to use any of the following strategies:
1) Using Flare Journal (for child documentation and redirection) /Companion Journal (for documentation by teachers)
2) Using Sensory Bag of materials
3) Offering one book to read in calm down area
4) Breaking of/Redirection of OCD negative thought patterns by giving child a "special" or "important" classroom errand to do
5) Removing some stimulation if too much sensory input is occurring
After these interventions the child should be guided to rejoin class if possible.
If rejoining is not possible, another minor intervention may be needed.
If a major PANS flare occurs it is recommended that the staff attempt to use any of the following strategies:
1) Call school nurse, or other assigned liaison(s) for CHILD to remove her from where she was triggered, and bring her to a consistently established "quieter" or less busy space. (Currently using the nurse's office.)
2) Call parents and arrange for pick-up of child from school if after 45 minutes the child is not able to calm and rejoin class. The parents can them assess the child for potential illness, exposure, or infection at home or with Dr. __________________ or Dr. __________ .
Please be aware that CHILD wakes with fatigue most mornings and that can affect her ability to get to school in a timely manner. Please understand her parents are doing everything in their power to help CHILD get to school on time, in as functional state that they can with all of her medical needs met each morning.
Thank you all again for helping,
Please reach out at any time.
Britany LiButti"
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The content I created to submit (^ above ) was received and read over by staff and the principle. Together they created my child's actual 504. The one we discussed over our 504 meeting.
It looked like this:
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After getting all of these little things lined up for my older child this school year and continuously working on healing at home,
she's had an 80% reduction in her flares at school from September through March!
She is using all of the tools and supports she is supposed to in order to manage her symptoms and behavior at school, and she is absolutely rocking first grade.
Is this what ADVOCATING FOR YOUR CHILD looks like in a school setting? YES!
Is this a lot of work? YES.
It is necessary to help give our children the most supportive and least restrictive environment to learn in? YES.
Are our children worth it? YES!
(I can't wait to get our 4 year old in there next year because her soft PANS signs are not at all supported at her school now, and it's been a very frustrating feeling to have.
So, trust me internet friends, I understand having a supportive school and also NOT having a supportive school behind my children with PANS; I'm just very thankful that the school year is almost over and my younger child had made it quite well this far before hitting some bumps.)
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I just want to remind you all that most teachers practicing want the best for our children. They chose this profession that is low paying, high-demanding, and stressful as all get out because they love children and inherently love to teach, There are some bad apples but I think overall teachers are treasures and as long as you work with them and support them and provide them all of the opportunities for education about your child's medical illnesses and medical needs- that they'll absolutely do their best for your child.
I feel blessed to have been given the diagnosis that we have, and that we have understanding about it and so many resources online at our disposal to use to help our children and their teachers.
I was going to make this a bit longer, but I'll wrap it up here because I've got to get my kids to bed.
Feel free to reach out if you have more questions.
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