Poll: What did symptoms look like

[nicklemama]

My DS7 fits your graph 2 perfectly. Dr K found his 'potential minor exacerbation' in DS's medical records and we remember it. It happened 9 months prior to the big one. Ear infection, abx prescribed, cranky and irritible for a few months that we did not link to the ear infection but to Flonase. He had just turned 5 when he had the ear infection. 9 months later, the whopper after FluMist. Not dx'd, not treated. Resolved w/out treatment but no return to baseline. Few months later, started in again, no dx, no treatment. Fluctuations but never returned to baseline. Dx and abx started. Good results but not to baseline. IVIG, very near baseline. Residual and minor ocd left.

[KaraM]

I voted none of the above primarily because of the 1m period for sudden onset. I can see in hindsight symptoms increased over the course of 3 months or so. So my slope prior to the sharp increase would have been rising more slowly. We've only had two major exacerbations so far (hopefully that will be it). It was the similar both times. Never got back to baseline after first time (close), never went as high second time (close again); so in that respect I would say more like graph 2 with the onset increasing over 3 months instead of <1..

Edited August 5, 2011 by KaraM

[dut]

hi - I did 'none of above' for dd8 'cos we fit graph 1 for the first 4 or 5 episodes, fully remitting between episodes but now we no longer remit fully and our baseline is very slowly shifting upward.

 

I didn't vote for our ds3, didn't kow how to vote twice but he probably fits graph 2 but more mildly, maybe. It's difficult to tease out what is his natural baseline and PANDAS behaviours as he got ill so young.

[fsilverpsych]

Hello,

 

Graph 2 was spot on for us. When we look back, one year prior to DS6's first major episode, there were some mild to moderate symptoms (I attributed it to genetics and age- he was 3.5 then with mild ocd and anger). One year later (following the regular flu vaccine, getting strep, swine flu, and then strep again in the course of one month... we had the first major exacerbation within the next couple of months. Even with treatment (abx and a couple of steroid bursts/tapers; then tonsillectomy/adenoidectomy; and now prohylactic azith.), we have never quite returned to baseline (or like in graph two, the baseline seems to get just slightly higher with each episode).

 

Francine

[norcalmom]

Graph 2 - this is before treatment. Never went back to fully "normal" but got better and better, then caught a cold - back to exacerbation. It just saw toothed from there. Sometimes very obvious link to illness, but once or twice no - illness, perhaps he was exposed to someone else and that stimulated his immune system enough to exacerbate.t.

 

"sudden" probably took about 4 weeks to fully realize, not 24 hours. The NEXT exacerbation - it took about 2 days or all of the symptoms to appear at maximum levels.

 

I think what we had was approx 2-3 months prior to the "initial exacerbation" was a case of untreated strep. And I think in retrospect, he may have had some "minor" exacerbations -in years prior to that.

 

The "sudden onset" was different however - he had so many symptoms at the same time, and tics started then and obvious OCD. Prior to that he only had some odd fears, bedwetting - he would go a year dry and then wet for two months straight - and "ADD-like " behavior. Mild anxiety. Honestly wasn't tracking things, so don't know if the stuff happened at the same time - it was subtle.

 

The sudden onset was times 10, and add in 10 more symptoms.

 

He is has had 2 ivigs, and is seemingly stable, but still has one OCD issue, and some very minor other symptoms. He has not been ill - not even a sniffle - since ivig #2 (early April ), so that may account for a lot of it. Knock on wood he stays healthy.

Edited August 10, 2011 by norcalmom