Fear of insects as a symptom of pandas?

[h202]

Son (7) was diagnosed with Pandas over a year ago, treated and generally went into remission by June 2018. After going off abx in September, he had one flare last fall, and possibly a small flare this last January (both immediately treated with abx, and symptoms immediately resolved), but otherwise he is back to baseline.  His primary symptoms were hyperactivity and rage/defiance.  He never had classic tics or OCD.  I know ocd/anxiety can look different in different kids, but his specialist confirmed he didn't have oct/anxiety.  She said that she anecdotally sees a subset of boys with preexisting autism/adhd/add whose pandas doesn't always have tics/ocd/anxiety.  Because he has been at baseline for a while, we stopped abx at the end of february.  

Son has had a minor recurring fear of insects for some time.  Hard to pinpoint when it started - sometime last year.  It just wasn't a big deal and we didn't pay a ton of attention to it.  

The fear had gone away for a while (probably since last summer) and then after xmas picked up a bit.  A few weeks ago, it escalated significantly and for the first time is now a significant impact on his life.  He freaks out when he sees anything that could be a bug.  Sticks with the teacher at recess for fear of bugs. No longer wants to stay after school at the playground.  Runs from the car to inside after school.  Really freaking out when one gets near him. Hard to console.  As soon as he gets inside, he's immediately better.  

We have not had any other signs of pandas since at least January (really not since November).  In fact, son has never been better personality wise. Well behaved, happy, non-defiant, etc.   

My preference is that this has nothing to do with pandas.  He is also medicated for adhd, and we've struggled with side effects from that (both the adhd and the medication can cause weird symptoms). But it's very difficult to tease out what is tied to the adhd/medication because he needs it for school - so we can't really take him off the drugs.  

Has anyone seen a lone anxiety without any other symptoms of pandas?  

[MaryAngela]

@h202 The summer before my DS’s first major PANDAS onset, he developed a fear of insects. He avoided all outdoor activities at summer day camp, and would panic at home if a fly or fruit fly got in the house.  In retrospect, this appears to have been the beginning of his onset.  Although he had OCD symptoms, his psychiatrist said she would never prescribe a stimulant to someone with OCD, as it would exasperate the OCD.  After a hospitalization, he was put on a stimulant (Focalin, later switched to Metadate) and indeed, he developed a compulsion to pinch me.  This was his “happy” pill, though. It completely changed his mood when we gave it to him right before school, but he would “crash” and nighttime was unbearable.  He also wouldn’t eat from after breakfast until bedtime, and lost a lot of weight.  Ultimately after a year and a half, he developed priapism from the med after an additional dose was added during the school day.  

....fast forward 4 years after taken off stimulant, and he his medication free.  He has been receiving monthly IVIG for almost 18 months.  

[h202]

Maryangela - thanks for your response! It sounds like you have a kid like mine who has pandas and also adhd - is that right?  Or did he only have adhd symptoms because of the pandas?  My son has had adhd symptoms since infancy..... The adhd med we are currently on (concerta) keeps him pretty close to his natural personality (which is very happy, go with the flow -- which is why, when he suddenly started being defiant last year, we knew something major was going on).  Previous stimulants made him moody.

I am trying to follow your timeline: what happened to the bug fear?  Was it just that one summer?  Did it eventually go away?  What do you think made it go away?  

It's interesting because if you google adhd and bug fears, there are a ton of people talking about the correlation.  But if you google bug fears and pandas, or specific phobias and pandas, there aren't so many hits.  

I'd love to have someone tell me that's it's most like the adhd (or stimulant) and not pandas.  Because we can deal with the adhd. Versus if we think the bug fears are pandas, then we're looking at much bigger questions. For instance, his pandas symptoms have all responded very quickly to abx.  But the bug fear doesn't seem to correlate to when he's on abx.  So i don't even know what treatment we'd do for this.  Would we do ivig because we *maybe* think this is a symptom?  

[MaryAngela]

@h202 Although he wasn’t diagnosed with ADHD until age 8, my DS also had ADHD and sensory issues since infancy.  We used conventional therapy and treatments until he was almost twelve....  2 1/2 years on anti-psychotic which increased OCD and caused violent behavior.  We were continually told this was coincidental that it began at same time as medication. Prior to using medication, his first grade school year was amazing.  This was before we had any knowledge of PANDAS.  He was treated with back to back doses of abx for a sinus infection.  Again, in retrospect, it appears that his ADHD and sensory symptoms subsided from abx.  We have seen 2 different integrative MDs in past 2 1/2 years.  Both say that his PANDAS onsets began as infant.  He responded beautifully to abx in 2016, but wasn’t lasting.  From my understanding it’s a 2-step process.  First getting rid of infection, then turning off immune response (that’s where IVIG comes in).  It seems kids that get the IVIG younger, respond better (i.e. don’t necessarily need continual treatment).  I wish we knew about / were able to get IVIG sooner.  

As for the bug fear, it went away while we had abx success and from IVIG.  The bug fear was only the beginning (this was right before he turned eight). It escalated to one of the worst PANDAS cases that I have read about.  So bad that conventional psychiatrist diagnosed him with Schizophrenia. His turnaround from IVIG is miraculous.  

As a side note, don’t ever use Miralax.  It has been linked to OCD and other psychiatric symptoms.  Seems to especially affect kids with autoimmune issues (like PANDAS).  

Edited April 6, 2019 by maryangela
Typo

[NYCMom]

DS16 had a brief fear of spiders, now gone I think.