natterbus

Just thought I'd update the saga in case anyone has insight...2 weeks after prednisone and return of PANDAS symptoms, ds is diagnosed with a whopping double ear infection. He goes on amoxacillin. 4 days later it is not working and we switch to augmentin (isn't aumentin good for resistant strep too?). 4 days afer finishing augmentin he has a horrible headache and vomits. Strep test is negative. Mild sore throat and headache persist until on the 8th day he vomits again (that would be tonight and why I am up so late bc I can't sleep stressing about my poor little guy). We will be returning to the doc in the morning but I don't even know what to do. If the strep is negative again they'll just ignore me, but what else causes headache, sorethroat and vomitting over an 8 day period? Not to mention his behavior is the worst it's been in 7 months since we got the 1st in a run of strep diagnoses. At least I have an excuse to ask for Zith this time...there's nothing left if he essentially contracted strep within 24 hrs of finishing augmentin (or had it while on augmentin and it didn't work). Natterbus

I suspect that is true in our case or we wouldn't have had 4 cases in 7 months. Plus I have 2 younger boys that could bring it into the house in the coming years as well. I don't agree with her necessarily - that was just her unhelpful solution. I wanted to clarify why she claimed that strep would drop in future years. natterbus

The Dr. felt he would do better next year only bc as his immune system strengthened and hygiene improved he should catch strep less frequently. She said most of the kids who come to see her with recurrent strep are 7-8 yr old boys. Natterbus

Wow! Thanks for all the responses. I'll try to respond. The pred dose probably wasn't high enough to help PANDAS if a high dose is needed. I threw out the bottle yesterday unfortunately so cannot check without calling the dr. But considering I alse halved the dose on day 3 due to mood swings, it was probably not a helpful dose for PANDAS. We were just trying to help his breathing without worsening the PANDAS. He could have bacterial pneumonia. Pneumonia has been rampant this year here. Even I went to the dr last week thinking I must have it, my cough and asthma were so bad. Both DS and I were told our lungs were clear but that could explain the worsening PANDAS symptoms if the dr missed something. DS#3 came down with an ear infection this morning. Is there a reference for the penumonia causing PANDAS symtpoms or is it anecdotal? Perhaps the virus set him off. Our experience in the past has actualy been that right before he comes down with a virus, the symptoms subside, and stay lower during the illness, so it seems unlikely. Of course if it were bacterial, perhaps that is the explanation. It didn't occur to me that ped without antibiotics would make him more susceptible. The strep expert did say that there was nothing they could do about the strep unless he was a carrier (in which she would prescribe amox followed by a course of rampafin?). She said studies are inconclusive about the value of preventative antibiotics...that she felt they do not prevent strep or PANDAS symptoms from recurring. She felt things would get better next year when he is older. You've all given me hope again that there is a logical explanation. It is so upsetting to get your child back, think you understand what was causing it, and then to have it return only to wonder if you'll ever get rid of it again! If he doesn't start to improve today I will at least try to call the 'strep expert' and ask for advice, though it seems pointless. Natterbus

I was wondering if anyone can offer direction for further research or thoughts. DS8 was diagnosed with Asp 2 years ago. Aggression was a main component of our concerns. 7 months ago headaches (and only headaches) led to an unexpected strep diagnosis. As treatment wrapped up, we suddenly had a child we had rarely had glimpses of! He was so much calmer, less aggressive, kind and with fewer sensory issues. 3 more times over the next 7 months his behavior deteriorated, only to be diagnosed immediately with strep. As we learned to deal with this, I could predict when he had strep well before any traditional physical symptoms showed up. 2 pediatricians mentioned PANDAS. A strep specialist said it is possible but irrelevant bc there is nothing to be done about it. Sorry for the long history. The issue is that 10 days ago ds had a croup-like virus. He has asthma and breathing was poor so he was given prednisone for 3 days. I only allowed it because I had read a short burst of steroids could help with PANDAS, so I figured it couldn't make it any worse. It had been 5 years since he'd needed pred, but true to his history, day 1 resulted in violent mood swings. Now we seem to be right back were we started before we figured this out 7 months ago. He's angry, mean, impulsive and sensory issues have returned. We're 7 days past pred and it should be out of his system by now. I had him tested for strep and it was negative. Any possibility that Pred actually aggravated the issue rather than helping? Any ideas what to do? Thanks - Natterbus

We'll see. The dr is supposed to call me tomorrow so I can request a referral. I am hopeful she can recommend someone who will take this seriously. He is currently on Amoxacillin for a positive strep and his brothers are on Omnicef awaiting results of strep test. I'll look into the azythromicin. Natterbus

My dr. always says 3 days after antibiotics is adequate for a cure check. Where does the 3 weeks number come from? Last time we tested 11 days after finishing the antibiotics and it was negative. I started seeing PANDAS symptoms at 19 days after antibiotics and 9 days after that he tested positive. natterbus

Thanks for all the info. All of us in the family were tested for strep during the last episode (1 month ago). Only my oldest 2 sons were positive and both were treated with Amoxacillin. My 2nd son could possibly be a carrier I suppose...I'm not sure if he's had a negative test. Natterbus

DS8, whom we are starting to think has PANDAS as well, has had a low grade headache for the last 3 months but also frequently complains of stomachache at bedtime. Symtpoms clear up partially with strep treatment but never completely. Symptoms are worst at bedtime and also include dizziness and sensation of "heaviness". He has had a sinus xray and brain MRI to rule out any other conditions, as well as glasses for soemwhat imperfect vision...they can't turn up any other problems. natterbus

The doctors tell me no but from some of your stories I am wondering if they know what they are talking about. Can a throat culture be negative for strep and strep still be somewhere in the body waiting to surge when antibiotics are gone? I ask because ds8 (whose had an Aspergers diagnosis for 2 years) has had 3 strep infections in 3 months, with 1 or 2 tests of cure in between each one. It is like a miracle...2 weeks after the first treatment started I had a completely different child. Then a month later anger symptoms returned only for us to realize about 10 days later that it was strep again. Again a month later, odd behavior and anger increased but took us 10 days to suspect strep. I am wondering if he never really got rid of the strep in the first place despite a negative throat culture. The rapid culture has NEVER been positive and we often push 48 hours before the culture starts to grow despite weeks of symptoms. The other thing is that his main symptom for 3 months has been headache (also stomach ache) and while this improves after treatment, it never completely goes away for more than a few days in between infections. Thoughts? Thanks, Natterbus