Slower onset with re infection?

[JoyBop]

Has anyone seen a slower onset of returned PANDAS symptoms? DS had a raging pos strep culture 2 weeks ago. About 3 weeks ago we started seeing some revisited behaviors that we saw with her initial onset. To be honest I thought they were a gradual progression the last time as well but perhaps that's why it took us so long to figure it all out. She's been on amix for 2 weeks but behaviors are getting worse not better. It's still only mild compared to last time but she had strep for many months as we didn't figure it out. DSs symptoms come on fast and furious and this we got him diagnosed much easier. Is it possible for PANDA symptoms to gradually progress over time ? I'm so confused. Should we give it more time? Or would you switch abx at this point? Taking them both for another culture today to play it safe.

[qannie47]

Hi, My Matthew has had 4 episodes now in a year. Each one unique onto itself. Matthew's 2nd episode sounds like your ds's recent one...It was milder and slow to come on. I guess that because we got him on antibiotics right away, that short circuited the response and made it less severe. Perhaps that is what is happening with your daughter. I was told that each consecutive episode can present itself differently from prior episodes.

[norcalmom]

They change. From my research, and contrary to popular belief, the initial onset is not "overnight" Most parents miss the initial onset, and even the first episode. Not until the third or so do all the symptoms align and show up almost overnight. As the disease progresses, the "exacerbation" comes closer and closer to the time of infection, to the point where in some kids (those with vigilant parents, or, those with easy to recognize symptoms) you can tell by your child's behavior that they will, with in a day or two, contract an illness. Theory is that as the immune system matures it gets better at sending out the antibodies that protect it - faster. Its how you develop immunity to illnesses. In our kids case, its sends out the auto-antibodies along with the regular antibodies, which is what causes the odd behaviors tic, etc.

 

In my son't case I could see when he was about to head into an exacerbation and a cold or other illness when he wet his bed. For some reason, it was usually his first symptom, followed by a host of other within a 24-48 hour period. Could be that the the others are harder to observe, and there's no arguing with a wet bed. He's also have tic very close to the illness as well.

 

Most times his exacerbations followed a course of worsening for approx. 1-2 weeks, peak symptoms for about 2 weeks, and then about 2 more weeks where he got a little better. Its hard to see this pattern at first, because they get sick in waves and better in waves. After about a 6 week period he was back to baseline - or a new baseline, that may include a new or slightly different symptom that the last time. There were a couple exceptions to his - when he had loose teeth - much short - maybe only 5-10 days, that seemed to go awasy within a couple days of the tooth falling out, and he had a stomach bug - a 24 hour thing - and he only exacerbated for about 2-3 days with that.

 

Its not always (or even usually) strep that will cause an exacerbation. Many, if not most, kids will exacerbate with other illnesses. Strep is theorized to be a primary trigger (along with a couple others) to the condition. But, not necessary for subsequent exacerbations.

 

If this is only your child's second exacerbation, and you know the first time was caused by strep - you may want to consider being part of Swedo's study. They only need one or two more kids, so don't delay if you are considering it. They really only want kids that had strep,and it is either their first or second exacerbation. I wish we had caught it that early and gotten IVIG sooner rather than later! In addition they do a host of testing and screening. Maybe worth a phone call to find out if you might be interested and are eligible.

 

http://clinicaltrials.gov/show/nct01281969

 

Best of luck in nipping it in the bud.

[JoyBop]

Thanks for mentioning the study. We would live to but are excluded bc DS has already started CBT and he was on Prozac fir 5 weeks and just came off it two weeks ago.

Thanks to born of you for sharing your experiences with me.

[qannie47]

_{Great post Norcalmom. Spot on. I must say, as difficult as this disorder is to wrap your brain around, when I read examples about the cycle and how Pandas presents itself, it is so uncanny. Still sends chills up my spine.}

[thereishope]

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Edited September 29, 2019 by Vickie

[JoyBop]

No she wasn't in preventative. In fact we didn't even know she had PANDAS at the time and she was coincidentally treated for a persistent ear infection. First round was Amox. Second was Zithromax. Symptoms subsided but it wasnt til her brother was diagnosed and she relapsed and both tested pos to strep that we caught it. 3 weeks into Amox and she is definitely better. We plan on keeping her on Amox for 6 weeks total.

[EAMom]

Joybop:

 

"Recent (less than eight weeks) initiation of cognitive-behavior therapy (CBT).

Recent (less than eight weeks) initiation or change in dosage of psychotropic medication for OCD or tic disorder (e.g., serotonin reuptake inhibitors for OCD, alpha-2 agonists or antipsychotics for tic disorders)." from NIMH

 

well, if you stopped the CBT you could qualify for the NIMH study in 8 weeks...not sure how long PANDAS would have been going on at that point?

 

Norcalmom:

great post!

[JoyBop]

Thanks EAMOM. My daughter would qualify now but my son would not as we won't stop his CBT and he was on Prozac 2 weeks ago. I will hVe to look at what the abx requirements are. Both are currently being treated. It seems that the oy ones who get into the study are those that are not applying the recommended interventions. Or maybe as you are suggesting discontinue in order to be accepted. At this point I don't fe that we are ready for IVIG as there are still less invasive treatments we want to exhaust first.