In our home we know that we have one PANS/PANDAS child already, and the jury was out on our younger child, as we have been working through mold and co. and treating in order of urgent symptomatic need. Due to: the cost of treatments, testing, work to improve our home environment, buying supplements, buying healthy organic foods, inflation, losing possessions and things we need and replacing them,....
we remain financially screwed.
Most thankfully though, we feel that we are out of the scariest part of our journey, and things are just going to be a long while of diligence and hard work to heal. Yes, years.
It took a long time of treatments to get me mostly functional again. I still have many hurtles to jump daily but I'm light years away from where I was. My older PANS/PANDAS 6 year old was next to be treated as her physical and mental symptoms reached very upsetting heights last year. And now, this year post COVID, our youngest child (4 year old) began showing soft signs/red flags for PANS/PANDAS. I kept it on my radar this whole time of course, knowing that it could be a reality we'd one day meet, but we didn't have the money to treat her or test her- so it became a watch and wait situation. I hate that because I like to be proactive instead of reactive and I feel lot of problems children face -holistically- could be avoided or dampened if we were just more informed and more proactive.
Our family caught COVID right after the New Year and we one by one were taken down over the course of a month. Our youngest child began to do things I'd seen their older sibling do in the past which dramatically shifted the necessity for me to pay attention, start keeping notes, and get in touch with the Dr. as soon as I felt the symptoms were significantly interfering with her ability to function in her daily life.
COVID knocked her down, and then a couple months later other opportunistic bacteria moved in to start issues.
New Onset things I noted in our younger child:
-Painful red rash around vulva/anus for a couple of weeks
-Extreme irritability (uncalled for in the situation)
-Emotionally responding 'incorrectly' to a situation
-Paralyzing doubt of self, and Inability to make choices about anything at all, ever.
-Thoughts about food cleanliness or contamination
-High Sensitivity to noise
-Inability to Focus
-Inability to Listen
-Sensory Aversion to Socks and Shoes to the point of meltdown and inability to wear either
-Increased urination
-Poor coordination, falling and tripping often
-Fatigue
-Insomnia and Difficulty falling asleep
-Regression to Baby talking
I exhausted all the strategies, coping mechanisms, materials and tools I had as a seasoned parent and educator to help her through those issues, and I knew I needed to seek help.
I was waiting for anything "more physically visible" to pop up because I knew if I brought her to the Pediatrician's (Peds) office with mostly mental or emotional symptoms, I would once again be labelled the "hysterical" and "overreactive mother" and these things would most likely be shrugged off as developmental 'blips' or 'phases'. I would also probably be noted somewhere on charts as bringing in my kids for assessment and treatment when "it wasn't warranted" and I'd be labelled some kind of mom that cries wolf.
I couldn't afford to bring her directly to the Integrative Dr. who is treating myself and my older child right now or I would have considered that quicker/instead.
I also honestly I thought that IF I could obtain TESTING (at the very least) from the Peds, it would save me some time/money for when we can afford to bring our 4 year old in to our Integrative Dr.- as they would have some testing for reference during our visit along with symptoms.
Additionally, I thought that IF I could secure TREATMENT from the Peds in the form of antibiotics, it would serve as a kind of simple test to show remission once treatment began or once treatment finished. (I do not love the idea of antibiotics, but I was told in an acute situation to get those first and then follow up for other treatment, etc after using them.)
I had managed to wrangle my 4 year old into socks and shoes that morning, and half shove/ half have a staff member drag them into school (NEVER her experience before, but by now we were facing her daily school refusal due to very very intense separation anxiety.) I picked up both children from each of their schools respectively, and made our way to the Peds. They were in great moods, laughing, excited to be pulled out of school- which is something I never do. They were full of energy as their morning supplements had kicked in and they'd each spent time outside in the sun at school for playtimes. I gritted my teeth and drove with dread to the Peds office.
I brought my older child along to get examined and tested also because I'd noticed and upswing/new onset in symptoms in her too (about 2 weeks after the younger child):
-Painful red rash in the vulva anus areas
-Separation anxiety sky high with ritualistic needs upon departure
-Irritability when uncalled for
-Anger outbursts
-Increased urination
-Sensory issues with shoes and clothing
-Food contamination thoughts
-Fatigue
-Handwriting and Spelling Regression
-Regressive baby talk
-Excessive post nasal drip
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I knew they were sick. I knew it in my gut. There was nothing else that explained the onset better, and how it moved from my younger child to my older child. The young one had became PANDAS-y just after spring break. There had been rashes in the peri-anal region. The bad stomach pains had come along with frequent potty trips, and the feel of "having to go" but "not being able to go." Sleepless nights lead to experimenting with melatonin for the first time, the only thing that allowed her to drift off semi-peacefully and stay asleep for most of the night. No sore throats complained about, no fever, but how reliable can a 4 year old be about symptoms? And if her immune system were messed up from mold, as mine and her older sister's was... she wouldn't necessarily be able to mount a fever as an immune defense. Come to think of it, she had only had one fever in the last 3 years. Now she was showing sensory sensitivities I had never seen in her before, and a lot of mental/emotional symptoms. Crap.
The PANDAS signs emerged after my older child had been doing pretty well for a decent amount of time over winter. (COVID had started some PANS activity but she had fought her way back from it.)
Now she was getting very bad again 2 weeks after her younger sibling had begun to plummet into her infection.
I could easily see the older PANS/PANDAS child coming down with all familiar symptoms. I'd seen them in her before last fall. Walking back and forth to the toilet like imprisoned by it. "trying" to go 15-20 times a day. The stomach pains, excessive wiping- feeling like she hadn't wiped "right" or "needed to wipe again"... for the 4th or 5th time in a specific pattern. Beginning to cry because she "couldn't wipe right".
She never would have told me about these compulsions, because I don't think she would have recognized them as such (even when she'd never done this outside of strep before). these children's ages and ability to be self-aware limits their communication and understanding.
So as I parked the car, and my kids chuckled and joked in the backseat I mentally went back over the lists I'd had complied about the kids symptoms as individuals as well as onset. I reassured myself that I was their parent and I knew them best. I reminded myself that I was educated and capable of advocating for my kids and asking for a test, It was the very least I could do- ASK for a TEST.
They piled out of the car zooming around the sidewalk and into the lobby, I saw their regular pediatrician, behind the glass and heard "...they look fine..." as she spoke to a receptionist. I will never know the context of that remark as it could have been about paperwork, or rotation schedules, or a personal conversation between them, but it sucks that my mind jumped to my children. I felt like this was just such an uphill battle.
I felt triggered already and I could tell that it was my own problem with being so gaslit with my own health illnesses in the medical system. I tried to ignore it during the visit and focus on being a good parent for my kids. They happily scrambled around the seating area, weighed in perfectly, asked questions about the medical tools, sat quietly in the exam room and patiently wrote and drew in journals as they waited for their medical exams. It was laughable how "normal" they were at the appointment and it again, made me doubt myself.
Our regular pediatrician did not enter the room, rather the doctor who saw our 6 year old when she was refusing food in the late fall due to a "viral bladder infection."
He assumed her adamant food refusal (for the first time ever) was just because her stomach felt unwell, even after I'd explained her other psych and physical symptoms. I knew better than the virus had triggered PANS. Sure enough, when the assumed virus passed 3 days later, she began to eat again and her psych symptoms dampened. It was scary, and I now understand what other PANS parents go through when their child won't eat. It's horrifying.
He gave the kids a professional once over and I tried to repeat form memory the symptoms one child had and the symptoms the other child had, as well as onset for each. I explained how their peri-anal rashes had cleared up as I had been using an antibiotic cream I'd had from a previous illness of theirs, and that while they had no throat discomfort or redness, that it could still be strep due to what had presented prior.
I closed with "Dr _____________ (our normal ped.) told us to refer all matters of mold or PANS to Dr. Patel's judgement, and she recommended that upon PANS symptoms we are to get a Throat Swab, a Peri-anal Swab, and Blood Titers to rule out Strep.
He took their swabs and sent them out to a nurse. He followed up with how they'd call if they were positive, but the kids seem okay. He left the room and I'd felt like at least I'd advocated to the best of my ability.
Within 10 seconds he re-entered to room, and announced "Well, Older Child definitely has Strep. The nurse said it immediately came back positive."
I shouted out and pumped my fist "I knew it! Oh man, I fricking knew it. There had to be a connection between their symptoms and an illness and this shows it."
He replied "Wow, most parents aren't usually glad when their kids have strep." And followed up with a standard APA response on PANDAS and how they aren't actually sure if there is a relationship.... but I just zoned out still jazzed as fuck that I was right.
It seems that the American Academy of Pediatrics is still behind the times and are in limbo or whether or not they actually can accept the science behind PANDAS. The AAP Red Book, for example, doesn’t recognize a relationship between PANDAS and GAS. Like the Generalized Anxiety Symptoms that SKYROCKET when a PANDAS child get strep, but SUDDENLY REMIT upon treatment. https://publications.aap.org/aapnews/news/12434
He explained as per a classic AAP Red Book response that they would be concerned about Rheumatic fever and asked if I wanted antibiotics. Yes.
Did I want to treat both kids? Yes, otherwise we could just be passing this back and forth.
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A quick script later and a few days and doses of Amoxicillin later- our younger child is happily skipping into school on mornings without looking back to me. She's sleeping better through the night. She doesn't make me do certain routines when I leave the house. Her belly pain is gone. She is cracking jokes, and playing inventive games again- instead of UNO all the time. She has open ended conversations with her sister and myself again at dinnertime- instead of bring up the same topics over and over, and asking to play the same two things "I-SPY and "Would You Rather" until I politely beg her that we don't want to play anymore. There are more examples, but of course it'd take forever to list them all.
The point is -MY KID IS RETURNING. Her self, her spirit, her shine, her creativity, her spark. Because of an anti-biotic and understanding about Strep and PANDAS.
My older child is no longer wiping with compulsion. She is visiting the toilet less often. While I still have to do some rituals when we parts ways before school, they are short and sweet in length. She is returning to imaginative play again, and creating more open ended crafts again. She is having less "nightmares" or intrusive thoughts before bedtime.
She looks forward to her birthday and inviting all the friends! instead of how she was a few days ago... terrified of a large crowd. She actually IGNORED that I left the house when I left yoga one night, this is unheard of.
I will reiterate- The point is -MY KID IS RETURNING. Her self, her spirit, her shine, her creativity, her spark. Because of an anti-biotic and understanding about Strep and PANDAS.
I now know I have two children with PANS, and they also have PANDAS (which is a subset of PANS). Our younger child will be transferring to her older sister's school next year, where the 504 we have in place has helped her thrive this year- even throughout PANS/PANDAS flares, continued Mold &co. Treatment. This is the school where "Everyone gets what they need" and I honestly know in my heart that they do there. Instead of the teacher punishing my younger child for acting out and expressing PANDAS symptoms in class, or not understanding why they need extra support- even after I try to explain... she'll be understood and supported. And that is what I want for them as a parent. ( I have a sperate post on creating your PANDAS child's 504/IEP here:
Things aren't always going to be easy to advocate for them, but I don't give a fuck.
I'm their parent and that's my job. If I do it well enough, they'll have a better shot as recovery so really there is no choice.
They deserve it.
For more info about PANDAS you can read here:
Organization for PANS/PANDAS
Organization for PANS/PANDAS
Webinar on PANS/PANDAS
Lecture on PANS/PANDAS
Keep going PANS/PANDAS parents.
Don't Stop.
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