Flare protocol and prognosis?

[h202]

Not getting any hits on my last question (flare versus reemergence) so let's narrow down the question a little!

Let's assume DS is having a flare.  He was at 100% remission, no abx prior to the flare.  Flare started out with minor symptoms (minor irritability at school), and within 10 days escalated to minor-moderate -- which is when we realized something was happening.  

Our pandas doctor immediately prescribed 10 days abx.  We also restated ibuprofen, fish oil, and D3.  We are awaiting new bloodwork to see if there is an infection (but don't have anything recent to compare to, for purposes of seeing the trend).  We saw improvement to 80-90% within a day or starting abx.  

For those of you whose kids (1) don't take prophylactic abx; and (2) got to 100% remission between flares:  

What is your protocol for dealing with flares that start in earnest?  Does it matter if the trigger is strep infection, versus a non-bacterial trigger?  Obviously, if the trigger is strep, you need to address the underlying infection with abx, and presumably the issue could escalate if untreated. But do you need abx if it's a non-infectious trigger (loose tooth) or mere exposure to (but no symptoms of) strep?   If your kids just have a moderate flare from, say, a loose tooth, can you minimize the flare with ibuprofen, and then it passes after a couple weeks? Or do you need abx?  For those non-infectious flares, if you didn't treat, would it pass within a couple weeks, but with more severe symptoms?  

 

 

[MaryAngela]

This doesn’t directly answer your question, but I think a loose tooth would be considered an infectious trigger...from hidden bacteria being unleashed.  My DS first severe onset occurred 48 hours after having dental work.  He was given psych meds for 2 1/2 years, which made things much worse.  He only began to improve after I found out about PANDAS and began treating with natural antibacterial and NAC.  When my DS had his second and most severe onset, we saw limited improvement from natural antibacterials, but took 7 months to find a doctor who would try an abx.  He became completely debilitated during this time.  He no longer had an active infection (normal strep titers), but responded beautifully to Augmentin.  It was miraculous.  Unfortunately, the high dose was only prescribed for 30 days, and he declined.  We were never able to recapture this recovery with abx alone.  In the book Shadow Syndromes, one of the Stanford MDs talks about the difficulty “recapturing” the recovery from abx if they are stopped. 

[prestopony]

I'm not sure I'll be much help here either - I wonder the same things you do. My 14 year old daugther is a PANS case - never had strep, but believe allergies/chronic sinusitis to be the culprit. Just diagnosed in March of this year, though suffering since she was a toddler - had excellent success with Augmentin, much less so with Zithro. Did 30 days of the Augmentin - we did see a minor regress when she came off the Augmentin that I don't think we were able to really regain, UNTIL - - - she had a flare about 6 weeks ago, I think due to a cold - no infection in bloodwork, so we opted for 30 days of Naproxen (Aleve) instead. She responded extremely well, dare I say back to Augmentin-like improvement. She is now off the Naproxen and seeming to maintain, but it's only been a week. So in total, I'd say she recovered from her first flare, and I'd credit the Naproxen. Her doctor's plan B - should she not have responded to the Naproxen - was going to be prednisone, just as an fyi.

So I wonder what will happen with the next flare, or I wonder if she will just gradually diminish over time. She stays on her supplements all the time - in fact, I made the mistake of switching up her probiotic - and wouldn't you know - she definitely regressed. We went back to the old probiotic, and all is well again. She has about 10 supplements that she takes daily - everything from addressing inflammation to methylation to Vit D, Quercetin, and more. I'm also throwing a bunch of neuromotor stuff at her - the MELT method and MNRI exercises, to try to get her sympathetic nervous system to chill out. Her body has been in the fight or flight phase for 10 years or so, I just figure that can't be healthy. Since we've started these exercises I swear she's continuing to improve, so whatever the reason we'll take it!

Good luck on your journey, maybe others will chime in!

 

[bws1565]

Her body has been in the fight or flight phase for 10 years or so, I just figure that can't be healthy. Since we've started these exercises I swear she's continuing to improve, so whatever the reason we'll take it!

OK so  we are sort of in the same boat, with body of DD in sympathetic mode for years.  Can you elaborate more on these techniques and how they are helping?  And what would be your experience with traditional psychological therapy for these issues?

[NYCMom]

Our DS(16) did the abx protocol for about 5 yrs (6-11 or 12). He greatly improved without needing abx once puberty hit (as predicted by his ped). His only side effect from the abx protocol was an occasional stomach ache. We mitigated with probiotics. He now just takes probiotics and sometimes advil when he has a headache. I suspect most of his headaches are PANDAS related.

We are not a medication happy household, so I had the same reservations about prophylactics. However, when weighing the risk of tics and other behaviors becoming permanent, we decided it was worth a stomach ache or two. As he improved and puberty set in, we felt comfortable dropping the abx and dealing with flares with advil and probiotics.

I can confirm that he was triggered by bacteria as well as viruses, so more PANS than PANDAS. This occurred even when on abx, tho to a lesser degree. I can also confirm the dental triggers, loose teeth def had an effect.

We tried for years to alter his diet and insert supplements, but he's a very bull headed kid and with two other children it was difficult to enforce. Had he been a more severe case, I'm sure we would have been more vigilant.

He is 100% most of the time. I see shadows of his hyper behavior and tics occasionally, but very mild and nothing that bothers him. No one else would notice if they didn’t know.

[Mamafour]

We treat flares with azithromycin regardless of trigger. I will say, we don’t often know the trigger. We think sometimes it’s as simple as seasonal allergies. Apparently azithromycin has an anti inflammatory effect as well. 

We don’t try to see if the flare will pass on its own (ie if not bacterial and don’t choose abx) because in our experience, we do better to treat it quickly. So much easier to solve when the inflammation is just starting. 

I will say I think I understand your train of thought with the question— is it’s not bacterial, why would abx work? I struggle with that idea, but also have seen what happens to my child when we try to wait and see if it will get better on its own, and it’s not worth the risk. 

[MJS]

This is my first post.  My Granddaughter, age 14 - PANS diagnosis on antibodies since July had her first flare resulting in her being out of school.   Cause could be allergies or exposure to things at school.  Dr changed antibiotic and rans labs to find mycoplasma IGG tripled since last lab.  The set back was dramatic - and her fatigue was a huge issue to her getting to school  - often falling asleep before she left for school.   -  now we have to deal with a truancy issue....     Her mood is off and she is not where she was the beginning of Sept - She is on probiotic and anti viral meds.  Flare started mid Oct as it did last year......and every Oct for years before she was diagnosed.  Would like some guidance/suggestions on school attendance during a flare and any other suggestions.  I am at a loss of what to do next at this point.  

[bobh]

Sorry to hear about you and your grandaughter's struggles.

For several years, it was impossible for our child to get to school, because of his severe OCD.  We chose to homeschool (mostly using online resources) - it was that or nothing.  Different parents, and situations, have made for different coping mechanisms (e.g. type schooling in the search box at top right, once you are in this forum).

If the issue is just October,  you might approach the school for some kind of leniency/temporary school at home option.  Many parents have had discussions with schools, with varying success with accomodations.  It is quite a chore to educate schools on PANS/PANDAS - it depends on their previous experiences.

By the way, probiotics consistently made our child worse.  I have found this to be the case for a suprising number of PANS kids, but by no means all.  Many kids aren't really checked for this (by on and off several times) - the assumption is often just "probiotics are helpful".  Of course, that doesn't explain October, but our kid had lots of flares at different times and for different reasons, but regardless, his symptoms were less when he was off probiotics, whatever his current state.

[mrsdalloway]

You might want to consider requesting the school put a 504 in place, for medical reasons. The fatigue is a direct result of the PANS/PANDAS and the school needs to accommodate. We've been down a long road with our schools. Or, if you think it's warranted, ask for an evaluation for an IEP. These will afford some protection for your granddaughter. And a good idea to build in some protections for flares--symptoms will increase and therefore greater difficulty to be in school and attend to school work. (You can ask for shortened school day, ability to leave class whenever necessary, pass to guidance office, check-ins with school social worker, preferential seating--not sure which of these would be helpful.)

 

We had our town truancy officer threaten us when we first began down this road! It's not fun to have the school breathing down your back while you're preoccupied with your child or grandchild's health.

 

There are online schools now too...

 

[MJS]

Thank you for the replies!  Will suggest a look at the probiotic  - a few days off would be ok....will try anything.  Granddaughters mood is still 'antagonistic' after being on the minocycline for 14 days.  Will look at schooling options - initially Dr felt if she should be in school if she could get to school - but we will see if that happens this week..  

Did anyone sign a medical release for the school speak directly to their child's doctors? ???  Is this a good idea??? (Granddaughter has to sign the  release form also since she is 14 yrs old..)

The school is pushing hard for this stating they want to explain the truancy laws to the Dr who does not give individual medical excuses for the absences during a Flare therefore the truancy issues now.  The school has told us the medical disability does not exempt her from truancy even during a Flare. 

The school started with a 504 last year  - before we knew what we were dealing with and changed it all to an IEP  - without an eval (since she was not in school)- again before we knew what we were dealing with  - stating reason of "emotional disturbance".   IEP now states she has PANS . - they have given her a "special education category" & that does not make sense to me because without PANS she would not have a disability.  

At this point she is failing the marking period which started with the Flare.   She was in E-school for the last half of last year before diagnosis. - We are probably looking at that again to take the pressure off.  She does well when she gets to school......but apparently may not have the stamina to keep it up  .(she does not want to. be singled out for special treatment).  We feel so desperate but know others are dealing with the same issues.

[MountainMom]

We just completed IEP process for my DS8. My rather basic understanding is that an IEP is preferable for long term situations. It’s the accommodations that were more important to me m- that they be in place permanently so that they are there when he needs them. Much of the accommodations above plus typing, speech to text and/or a scribe. Is your granddaughter taking Aleve? It’s not a cute, but helps us. Also epsom salt baths.

[MaryAngela]

@mamafour

What dose of Azithromycin for your child’s flares and for how many days?

How old is your child?