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What next after antibiotics?

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I've posted on some other posts about my son's PANDAS - the most dramatic symptoms of which struck overnight in February (it's possible other symptoms were creeping in since November).  He does not have debilitating OCD or tics, but had increased anger, adhd, emotional liability, defiance, ASD type behavior and meltdowns that make school untenable, minor sleep disturbances, very complex stereotypies, separation anxiety, etc.  Some of these behaviors were drastically increased behaviors of existing conditions (adhd, stereotypies, some minor ASD qualities), while the others were totally new behaviors (anger, defiance,  meltdowns, anxiety).  After months of thinking these behaviors were adhd medication side effects, our primary care doctor suggested pandas.  He tested with very high strep antibodies, so our primary put him on antibiotics and then a 5 day steroid burst.  He had great improvement for three days after steroids.  We thereafter got in to see Dr. Murphy in florida. She recommended continuing antibiotics for several weeks and reassess. At the 1.5 month mark, we felt like we'd seen great improvements: the anger and defiance were mostly gone, and sleep improved.  He was, however, home full time with a nanny.  When we recently resumed camps and some other "stressful" activities, he had major behavioral problems again.  So the antibiotics probably took the edge off things, but we think we still have anxiety as a core issue, and that anxiety makes school an impossibility right now.  

Dr. Murphy said that if the antibiotics don't work, we'd probably jump right to steroids (since he already responded positively to the 5 day burst).  She mentioned a 1-month taper, or IV steroids ( but said those could be more challenging to administer - because of insurance and finding a provider), and then IVIG as a potential too.  Our insurance (cigna) likely does not cover IVIG.  We are seeing Dr. murphy next week to discuss.  

Should we try the 1 month steroid taper first?  Or should we push for IV steroids?  In either case, what co-medicines (like steroid extenders) do we need to ask about?  If we start with the one-month taper, does that take IV steroids off the table for some period of time (Dr. Murphy said she won't do steroids for longer than a month)?  

Without insurance, is IVIG really worth doing (one treatment we would pay for.  But so many people report needing 5+ treatments - which would be like $40,000+, which seems like a lot for something that may or may not work).  

What other options should we be considering?  Our case is no longer severe --in that we can easily work around his issues so long as he is at home.  But it's very severe -- in that he can't attend school.  

I know there are right answers for everyone, and what works for some doesn't work for others.  Just wondering what seems like the next logical steps for us.  

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I thought I'd share a bit of our journey in case any little bit of it helps - our DD 14 (newly diagnosed PANS) still has extreme separation anxiety.

She is doing fairly well now - except for the extreme separation anxiety. The difference for us is that she never could handle school – she was a preschool dropout - which looking back, knowing what I know now, I'm pretty sure she's had PANS since she was very young, but it's taken us this long and countless doctors to figure it out.

Her PANS was at it worst when she was around 10 - before we knew it was PANS though - she was hurting herself, jumped out of a moving car convinced she was going to get carsick (which she never has to this day), fits of rage if her Dad and I were to leave the house together, OCD showering, emitiophobia, bedwetting, talk of suicide, suddenly couldn't be left alone at gymnastics, etc.

When she was at her worst we got her started with a psychiatrist and a therapist. Her psych put her on Celexa. It helped some - we kept upping the dosage hoping it could do more, but it had it limits with her. Her psych eventually added in Busparone - the addition helped a little, but still not much overall. We then switched to Sertraline (and continued the low dose of Buspar) which we saw the most results from. The Sertraline seemed to take enough of the edge off the anxiety to allow her to access some of her calming down tools that she was working on in therapy. The next step for us would have been to try anti-psychotics, but we weren’t comfortable going that route, because we were functioning ‘enough’.

Now, that all being said, the reason we finally ended up with a PANS diagnosis is because her therapist suggested we do a psych eval because she was not progressing through the separation anxiety / CBT like the therapist anticipated, and she wondered if there was something else going on. The psych eval led us to a new pyschiatrist who was familiar with PANS, and we started treatment. But, for that part of our journey I will say the Sertraline was the most helpful. She is still on it currently, 100 mg.

Since being diagnosed with PANS - she is on many supplements now - in a nutshell: some to address her gut issues, some to address inflammation, some to address immunity support, and some to address anxiety. The specifics for the anxiety stuff she is on Lithium Oratate (Pure Encapsulations) and CBD oil (CV Sciences, 15 mg soft gel – squeezed into yogurt since she doesn’t swallow pills). I actually think all the stuff she is on has helped her anxiety – the whole gut/brain connection, inflammation, etc – I can give you a list of everything if you’d like.

She has come off the Busparaone, her Exlax, Miralax and enema treatments, and her prescription acid reflux meds. Her OCD behaviors - while they were pretty mild before - are mostly gone. Her food restrictions have improved dramatically, she has actually gained weight and is finally 'on the chart' as they say. She is still on Sertraline for anxiety. We continue to work with her therapist on CBT and exposure therapy for separation. She continues to be homeschooled. She said she wants to take a class at the high school this fall - but after meeting the principal last week she fell apart (at home) and said she doesn't think she can do it, so we'll see. The therapy around separation anxiety - is for us anyways – very, very slow progress. We stared at 10 minutes away from her while she is at home with grandma. We are up to 1 hour and 30 minutes – and it’s been over a year for the progress. For us, therapy - and the psych meds - has been an integral part of her treatment.

We actually saw the most improvement around her separation anxiety when she was on Augementin for recent sinusitis. It was like a switch had been flipped for 14 days. When she came off of it her old behaviors came back. We are now trying 30 days of Azithro - but it is not having nearly the same effect as Augmentin – in fact I'm not sure if I see much difference at all.

I read some of your other posts – and I see that you mention sensory issues. My daughter struggled with extreme sensory issues when she was younger – she did OT which was helpful – but the most effective thing was the Wilbarger Brushing Protocol with joint compressions – it REALLY helped her. You can google it and there are some youtube videos. We did it every 90 minutes during her waking hours for 2 years. Now we just do it once at night, probably just for our own peace of mind. 😊

I was curious - what antibiotics did you use that seemed to be helpful for your son?

Sending good thoughts for you and your son's journey.

 

 

 

 

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Prestopony's response reminded me of how common sinus issues, or other hidden "biofilm" infections (tonsils) are.  "After abx" should be after several different types of abx, including significant doses, not just prophylactic doses.

Our ENT didn't think our son's tonsils warranted taking out (he thought they were pretty normal), but we knew differently, and he obliged.  When he came out of the operating room, he commented just how awful they were when he had them out and cut them open to have a look.  Post-tonsillectomy was a long, slow improvement for our son (the year after the tonsillectomy was noticeably better than then year before, according to our logs).

It is a cat-and-mouse game chasing triggers.  We also had a significant flare from a teeth cleaning, and only then found out that the mild gingevitus that he had (not enough brushing) had been responsible for a months-long flare.  He improved considerably after that was dealt with.

If you really believe all possible infections (have you swabbed for perianal strep?) and environmental triggers (mold, allergens) are dealt with, then there is a deep rabbit hole of supplements, some of which can have dramatic effects (positive and negative) to jump into.  I would tend to go that route before plunking down $40k for IVIG.  But it takes patience to do it right, which is with just one change at a time.  I have heard several stories of parents who in desperate agony, take their kid off everything they have piled on, only to find them improve.  It's because they added lots of stuff at once, and one or more of them made the child worse.  For example, probiotics trigger some kids (we were on them for 2 years before we figured that out - what a lot of suffering we caused, by not carefully adding/checking when we first added that).

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