1. Two pictures are worth two thousand words: First is height/weight charts showing clear progress since our most current “re-feeding” strategy was begun a little over a year ago; Second is BMI chart showing same forward progress.
2. Unfortunately, despite the progress in some ways we feel no closer to normal life (which this kid has literally never had). In hindsight, some issues she had over the years stand out as potential clues to a picture that is different than ARFID or ED being her “main” issue (although the most dangerous). They include:
a. Actively and intentionally resisting feedings as early as two weeks of age.
b. Early strep (9 months)
c. Early and frequent sinus infections often requiring multiple rounds of antibiotics to clear
d, Early hoarding of food wrappers and trash that she tied to sentimental experiences. At one point we found a cache of Dove chocolate foils that have the little printed messages on them … she wanted to keep them to remind her of her parents when we die. I have not found that in my records yet, but I think she was 3 or 4. I monitored the hoarding thing for lots of years and in most ways it seemed somewhat age-appropriate or maybe slightly excessive, but she did gradually come to be able to throw things away so I figured it was just a phase (there is hoarding in my mom’s generation so I was pretty on top of watching to see if it resolved).
e. Strong separation anxiety and stranger anxiety for lots of years, seemingly more than her peers even as an infant and toddler (although not always a bunch stronger than her twin)
f. Fungal colonization in her esophagus found in 2013 on a scope
g. Sudden and first-ever physical/outward manifestation of anxiety in 2013 …. Happened to be close in time to the fungus and its strong medication. Also coincided with a strep (or sinus?) infection for which she was on two rounds of antibiotics. Also coincided with having very recently started Periactin as an appetite stimulant. The anxiety showed itself by complaints of a “scared stomach” which I interpreted as jittery or like butterflies based on her limited vocabulary at the time. She clearly disliked this brand new sensation and the only small relief from it was to curl up on her shins in the fetal position. She also had visual disturbances. We, and her doctors did not argue, assumed it was from the Periactin (known side effects are anxiety and hallucinations). So we quit the Periactin and in fact gave her a placebo and the symptoms greatly decreased. In the light of 2019, however, what seems like a temporal relationship to the Periactin could also have been a reaction to the Strep and the decrease in symptoms coincides with the second round of antibiotics clearing the infection just as much as it coincides with stoping the Periactin.
h. Had a panic attack in May 2017. First ever … I had never seen anything like it…. Talking like a three year old (she had just finished 5th Grade); repeating over and over “home” (we were on our way out of town); panicked eyes; just not herself in any way. I recall walking through the hotel parking lot and demanding my husband help flank her because I honestly thought she might bolt (also thought she could try to open the car door as we were driving). Nothing like my normal kid …. Called therapist from the hotel and she talked us through how to respond to a panic attack and what to do the next day if it happened as we were boarding a plane. I chalked it all up to: lack of sleep with end of school year excitement for several days; nervous for flight; leaving cats for first time; down on calories due to hectic end of school year and giant calorie-sapping field day; etc. NOW I have laid out everything in a giant timeline and this “panic attack” was sandwiched between an illness in which she tested negative for strep but even the doctor was surprised and said she looks quite ill; my notes at the time described it as something clearly different but I could not tell what and that she was exhausted/fatigued in a new and extreme way. I also have notes from about two weeks before the panic attack that she had a new “diaper rash” that was bright red and it hurt her to sit and do homework. Then in June 2017 she had a major blood panel done after some concerning eye symptoms and it revealed an elevated ANA (but nothing else out of norm on blood labs). NOW I wonder if the diaper rash was a strep infection.
i. Had Seventh Grade vaccinations in June 2018 and within ten days, had started having tics for the first time ever … started as head/neck/shoulder and leg kick and quickly added in a vocalization. Seemed like an odd first-ever tic expression. Also, she denied any type of “urge” many feel before a tic. Neurologist said “lots of kids get tics” and it will go away. It did in fact stop happening after a couple weeks. In the months leading up to the vaccinations and tics, she had been restricting in a new way for her (ditching lunch at school and fibbing about it).
j. Several colds/sinus infections December 2018-Feb 2019 documented, Then sick again in early March but they thought viral. Did not resolve as expected so they said secondary sinus infection in early April and started antibiotic. Got a little better but then worse again… they monitored a bit then did start a second antibiotic. Right in there, she had MAJOR panic; school refusal; needed me with her 24/7 (like in the bathroom in order to shower); baby talk; wild terror-filled eyes and giant pupils; basically not rational; new stutter she had never had a hint of before; missed almost two months of school at the end of the school year. Symptoms started to abate as the second round of antibiotics ended; but coincidentally that was also when the school year ended so initially put the improvement to no more school stress. One of the oddest things about that time was that her eating increased. With missing school all those days, she was down 500 calories just on supervised school snacks. And there were many days we also abandoned the morning shake that is about 500 calories on its own. But rather than stagnate or lose weight, she continued to gain. Even after the symptoms went away, she has continued to eat like a normal kid. I have literally never seen her do this. I don’t even make the morning shake anymore. I don’t have to prompt her to eat. I half fear this is binge activity, but I will examine that further if need be as time goes on and as we sort through if there is a proper diagnosis of something like PANDAS/PANS.
3. The above is just a sampling of her issues over the years. I just never got comfortable with these all being normal anxiety or even regular panic disorder. And she has never fit well into a typical ED presentation, at least as far as I can tell reading on here or even in paid consults with Dr. O'Toole and others over the years. And it was unsettling to always have her stuff be “rare” or a unique presentation, and many times the first of “whatever” the provider had ever seen (in multiple different areas including eye symptoms). So I started putting together a more comprehensive timeline, pulling in notes from all providers; stuff I had put on here in real time; emails on patient portals to doctors (these don’t appear in a normal medical record chart shared among providers); etc. It looked suspicious for PANDAS/PANS. So we are heading down this very murky path and seeing where it takes us. It is exhausting to get up to speed on another potential diagnosis and it is even more gray in terms of diagnosis and treatment than EDs seem to be. But we have sunk even more money and time into this, and as of now, have three providers who are saying until shown otherwise, PANDAS/PANS seems to be correct. We are awaiting blood tests which will neither definitively confirm nor exclude the diagnosis, but they still seem important to have. We have paid cash for an out of state consult with a top-tier PANDAS expert and he opines she is PANDAS and likely has been since 1 or 2 years of age.
4. I will say this, if my kid ends up PANDAS/PANS and if that sort of treatment actually ends up making her finally have a normal childhood, then I would bet that in time it is found a ton of ARFID kids are in fact PANS/PANDAS. There are some very big red flags that my kid does NOT have, but she sure seems to fit this better than anything else. AND if I am being honest, there is a lot of overlap between a lot of the true PANDAS kids and some of the stories I have read on here for years …. There are great PANDAS resources so if anyone wants help, let me know. It is definitely controversial (both WHETHER it exists and if so, HOW to treat/prevent) …. But if the camp that says it exists is correct, they have a pretty concise road map to see if your kid should be considered for it.