T_Anna Posted October 14, 2013 Report Share Posted October 14, 2013 Qannie, I am so sorry about your experience. As if it's not hard enough to have a child who is suffering (no matter what the reasons), that there are institutions full of medical professionals without compassion is terrible. Living in NY, I think the hardest thing for friends/relations to understand is that there isn't some nice shiny hospital with a fancy name that WANTS to help our children. I constantly get calls of "you need to call my guy, he's so smart and I'm sure he knows all about this." Hugs, keep strong and be thankful for the rogue doctors who understand and want to help. Sounds like you have two which is double what many of us have found. T.Anna Link to comment Share on other sites More sharing options...
qannie47 Posted October 14, 2013 Author Report Share Posted October 14, 2013 Dr. K said his own blood work came back showing no infection...He wants to continue on abx for five more days, and then steroid burst if no improvement...When I pressed him for thoughts, he said with no infection, it is less likely that this episode is resulting from Pandas...although he added that he is not ruling it out because he has seen everything....I just don't know anymore. If he responds well to steroid, would that support the Pandas diagnosis? I would like some thoughts...Ty Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted October 14, 2013 Report Share Posted October 14, 2013 A positive response to steroids usually points to some inflammation which yes, could point to PANDAS/PANS. Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted October 14, 2013 Report Share Posted October 14, 2013 The thing I'm learning about PANDAS/PANS is that even if you have had 100 pct remission, you can still have a flare for some unknown reason down the line. I know how incredibly demoralizing it is but we have to work through it. We also have toyed with alternative diagnosis, but while doctors have to kind of strain to make those work, and dont really have a solution when they propose them, the pandas/pans stuff is very obvious -- as in other parents saying ''oh yeah my kid was exactly like that'' or pandas-neutral doctors saying "that's CLASSIC pandas".I too have lived in deep fear about what my son's pandas problems will mean for him at school. And you know what, it DID impact him -- he was semi-kicked out, told only to come in the afternoons. And while that's incredibly distressing, it's also kind of liberating, because now i can do the five-week steriod program we were prescribed without worrying about it impacting him at school Link to comment Share on other sites More sharing options...
otksmama Posted October 15, 2013 Report Share Posted October 15, 2013 What makes dr k say that this is less likely PANS? Link to comment Share on other sites More sharing options...
qannie47 Posted October 15, 2013 Author Report Share Posted October 15, 2013 Otksmama: the fact that he could not find a current infection with blood work...that being said, he really did not want to definitively answer my Q, "Do you still think it's Pandas?". He said that he has seen too many scenarios to second guess anything to quickly....so I wonder if the steroid burst will cause him to reconsider his Pandas diagnosis if he does not respond. He will get it soon if he does not turn around. Link to comment Share on other sites More sharing options...
SSS Posted October 15, 2013 Report Share Posted October 15, 2013 I don't believe Dr. K tests for Lyme and co- infections... I'm sorry, I don't know if you've checked into that- one thing we experienced with a steroid burst, even if an infection such as yeast/ candida/ gut bacteria is present, we did not get relief from the steroid burst, belief being it suppressed the immune system and allowed any present infection to worsen. I'm sorry for all you've been through recently--- good thoughts-- know how hard it is and can be. rowingmom 1 Link to comment Share on other sites More sharing options...
Agnes26 Posted October 15, 2013 Report Share Posted October 15, 2013 Dr. K said his own blood work came back showing no infection...He wants to continue on abx for five more days, and then steroid burst if no improvement...When I pressed him for thoughts, he said with no infection, it is less likely that this episode is resulting from Pandas...although he added that he is not ruling it out because he has seen everything....I just don't know anymore. If he responds well to steroid, would that support the Pandas diagnosis? I would like some thoughts...Ty My DD was strep-triggered PANDAS. We have the infection and titer link. Had IVIG with Dr. K. She is on tx antibiotics and was at about 90 percent. She recently flared, I *think* due to hand foot and mouth at the beginning of the school year. Blood work (ASO, DNASE, immune panel) was all normal. Steroid course did provide a brief, but complete respite from symptoms. I have spoken with another PANDAS doctor who said that once the PANDAS/PANS horse is out of the barn, the flares can be strictly autoimmune. We're doing another IVIG with a local neuro. Hopefully. Link to comment Share on other sites More sharing options...
Dedee Posted October 15, 2013 Report Share Posted October 15, 2013 I just want to send you a big cyber hug and tell you how sorry I am that you are going through this. It stinks. You are a great Mom! Keep doing great Mom stuff! Dedee Link to comment Share on other sites More sharing options...
qannie47 Posted October 16, 2013 Author Report Share Posted October 16, 2013 I don't want to get my hopes up, but as of early last night, I felt the energy change in ds. (at this point I think it is a maternal thing). First, he made it through Karate without Ticking. Second, he sat calm last night with no great motoric movements. Third, this morning he woke up for the first time without going into verbal bird calls and antagonizing his brother. Fourth, when he realized that his skateboard was broken and unable to be ridden to school (you have no idea what kind of tantrum that could have produced), he handled it.....Later, his principal called at the end of the day and said, I quote, "DS had the best day that we have seen in weeks! He only needed 2 redirections all day. I personally stayed in class for 1 hour, and he did great". When I got home from work, my husband reported a great night... I must say, I have not seen him make it through an entire day like this in weeks...at the risk of sounding dramatic....Please Dear God....let it be....p.s Thanks for all the cyber hugs...I needed them. Link to comment Share on other sites More sharing options...
PowPow Posted October 16, 2013 Report Share Posted October 16, 2013 what changes have happened (medically) since the hospitalization? Link to comment Share on other sites More sharing options...
qannie47 Posted October 16, 2013 Author Report Share Posted October 16, 2013 Nothing, just stayed on abx course, of amox/clave, 500 mg 2x day.....this is day ten on higher strength....it is at these moments, that this disorder appears magical....you never quite get used to it....the ups or the downs...magic Link to comment Share on other sites More sharing options...
qannie47 Posted October 16, 2013 Author Report Share Posted October 16, 2013 Although tomorrow, I am adding 5htp to his dies. 50 mg to start once a day. Got through biotech...Peds diet gave it the thumbs up and could not find any bad reviews.... Link to comment Share on other sites More sharing options...
PowPow Posted October 16, 2013 Report Share Posted October 16, 2013 well, maybe there is something to that Augmentin stuff, huh? I am a skeptic, but I wonder if it DOES work. We saw improvements not long after starting it this spring, after nearly 3 months of . Doseage was 1000mg Xr, but my child is bigger and older than yours, I think. Great, qannie. I sincerely hope things keep moving along and that the bad, wasted experience you have does not hold you back. Link to comment Share on other sites More sharing options...
qannie47 Posted October 16, 2013 Author Report Share Posted October 16, 2013 Thanks PowPow....I get the skepticism.....although at this point, If I saw a pink elephant fly across the room...I would believe anything...in fact, I think my calm response would be, "Hey, look at that pink elephant flying across the room"...and then I would go back to my conversation without missing a beat... Link to comment Share on other sites More sharing options...
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