ANRmom

WorriedDADNMOM: Sorry for not being clear: All strep tests, rapid and culture were done at the pediatrician. All were negative. So can one have a strep infection but only show a fever and no strep in the throat? thats the part that throws me. thanks ANRmom

Hi all, I'm beside myself as I write this. My older son nearly 6yo is likely a PITANDS case. He is on prophylactic PenVK250 twice a day and we will be seeing an ENT soon to see if tonsils need to come out. But, my little one who is 2.5 yo is showing too many signs of PANDAS for me to ignore. In mid July he had a high fever for 5 days. Tested negative for a strep throat swab and culture (I did the test, since the older one had had strep thraat and scarlet fever a few weeks prior). Docs did not see any ear infection and chalked it up to a viral fever. In late August he had another high fever for 5 days. I took him in to the doc and the strep throat culture was negative. Again it was chalked up to a viral fever. In mid September he had a penile infection that was treated with a 5 day course of Augmentin. Two days ago on October 11th, he got his flu shot (preservative free single dose vial). Since July I have noticed more: 1. separation anxiety (optimistically chalked up to me being home more over the summer with kids and starting 3 day mornings at preschool since end of August), 2. more aggressive behavior - hitting and screaming one minute and being his sweetest self another minute; very dr. jekyll and mr. hyde like (optimistically chalked up to terrible twos; and starting preschool); 3. Past couple of days he has been asking to go to the bathroom more often (doesnt really pee very much when I take him to the bathroom, he is pretty much potty trained so we are just noticing this). 4. Lots of baby talk in the past couple of months that he did not do prior to the summer. What is going on here? It seems to me he has reacted in a PITANDS or PANDAS way to his July or August infection. What should I do? I have made an appt with Dr. L, but that is not for another month. What kind of treatment do PANDAS specialists recommend for toddlers? Please give me some advice. This is heart breaking. ANRmom

Hi Eljomom, which ENT did she send you to? I may make the appt. to see one anyway, to get another opinion. thanks ANRmom

Hello Kmom, I am looking for a good LLMD in the MD-Dc-NoVa area. Please send me the name of the person that you went to. Thanks, ANRmom

Hello Kmom, I am looking for a good LLMD in the MD-Dc-NoVa area. Please send me the name of the person that you went to. Thanks, ANRmom

Hi all, just a quick update and a call for advice: We saw Dr. L at the end of August, she thinks my DS nearly 6 yo is a PITANDS case of severity 1/10 and she put him on PenVK 250 twice a day prophylactic to ward off another strep infection. She ordered a bunch of test, and everything came back normal (including strep titers). the only thing that I thought that was out of ordinary was that he tested PRESENT for IgG band p41 for the Lyme test via Western Blot. Dr. L said that it did not concern her and that a lot of kids show positive on that band. But I am wondering if before we explore the tonsillectomy route (history of chronic colds, ear infections and upper respiratory illnesses since 6 months old; recent diagnosed and treated strep in July 2011, and according to Dr. L large tonsils), we should figure out of the IgG p41 band means anything substantial. Anyone have any advice? Any Lyme docs in the DC-MD-NoVA region that I should run the WB results by?? Thanks ANRMom

hi everyone! Thanks a lot for all your responses. My DS did okay at the blood draw... a bunch of tears and screaming, but not worse for the wear. He is fine. Next time I might prepare him better and talk about the blood etc., a la Magic School Bus. thanks for all the suggestions. We are waiting to hear the results of the tests. Thanks again! ANRmom

Hi all, we saw Dr. L a few days ago regarding my 5.75 yo DS with potential PANDAS. She has put him on Pen VK 250 x 2 /day. She has ordered a bunch of blood tests and says his tonsils are huge and may need to come out. We asked about probiotics and she suggested Florastor. Anyone have any experience with this??? Also, any tips on how to get my son through the blood draws next week??? He has never had a blood test before, and am worried he is not going to be okay with it (given his mood issues due to PANDAS). Meanwhile his tics have reduced (even before starting Penicillin, which is good, but he still has emotional lability). Any thoughts suggestions would be greatly appreciated. thanks ANRmom

Hi all, I need your input to figure out if my son has PANDAS or Tourettes or tics or other? (I posted this on the PANDAS/PITANDs forum as well) My DS 5y9mo was diagnosed with strep throat (via throat culture) and scarlet fever on 6.26.2011. He was put on a 10 day course of Amoxicillin. His strep and fever symptoms improved, but when I took him back for a followup visit on the 11th day, his strep test was still positive. So he was put on Keflex for 10 days. After that his strep test rapid and culture were negative on 7/16/2011. Somewhere along the way he started doing this vocal/coughing tic that was completely new. He has had tics in the past: eye blinking started when he was 2.5 yo; throat clearing started when he was 5 yo. This boy has been sick a lot in his childhood. Chronic ear infections (almost always treated with ABx), upper respiratory illnesses, constant congestion, etc. His eye blink tics very often coincided with him falling sick with something. In fact over the years, if he started blinking, my husband and I would remark to each other that "looks like he is fighting something". Usually his tics would last 2-3 weeks, at the most 4 weeks and then gradually disappear. This time, this new tic is still going strong. In fact it has gotten worse over the past 1.5 - 2 months. I have taken him back to get strep tests done and they have been negative (rapid and strep) on 8/15/2011 and 8/18/2011. Also, since last week, his muscles and body have been twitching and jerking in his sleep, thus not sleeping well either (he was never a good sleeper, but that could all be related to having chronic URI and otitis, too; also he grinds his teeth a lot at night). He is also more hyper and moodier than normal, high maintenance and can be difficult to manage at times. His sense of smell is also quite heightened and has a good ear for music. His writing is nothing to write home about. I am guessing this is all related. My husband googled strep and tics and found that this could be PANDAS. We are to see Dr. Latimer next tuesday, but just wanted to throw this profile out to you guys and see what you all think. His pediatrician has refused to put him on another round of ABx because of the negative strep tests and is not completely on board about the PANDAS diagnosis. Please, I would love to hear your views and experiences relating to these symptoms. Please advise. thanks ANRmom

Thanks for your input! Two follow up questions: Does anyone have any advice on what we should be preparing to take or discuss with Dr. Latimer when we see her on Tuesday? What is the prognosis for a kid that I have described? I'm trying to look ahead and be prepared for what may be to come. thanks again everyone. your input is very valuable. ANRmom

His fine motor skills have always been a little lacking. his writing is slowly improving but is not his strength. neither his coloring. A lot of the time its a bunch of squiggles.. but its getting better. I always just assumed he's lower end of the curve for that, given he is higher end of curve for reading. no noticeable change in urinary frequency. Emotional lability yes... a little bit of a roller coaster. We have had two great days (yesterday and today so far)... but before that .. very high maintenance and sour moods. Separation anxiety is not ongoing.. he had a couple of episodes in mid July, when he hung onto my leg saying mommy mommy. Very uncharacteristic.. but hasnt happened since. BTW: also he has a heightened sense of smell and also music. who knows this is all related too. thanks ANRmom

Hi all, I need your input to figure out if my son hasa PANDAS or Tourettes or tics or other? My DS 5y9mo was diagnosed with strep throat (via throat culture) and scarlet fever on 6.26.2011. He was put on a 10 day course of Amoxicillin. His strep and fever symptoms improved, but when I took him back for a followup visit on the 11th day, his strep test was still positive. So he was put on Keflex for 10 days. After that his strep test rapid and culture were negative on 7/16/2011. Somewhere along the way he started doing this vocal/coughing tic that was completely new. He has had tics in the past: eye blinking started when he was 2.5 yo; throat clearing started when he was 5 yo. This boy has been sick a lot in his childhood. Chronic ear infections (almost always treated with ABx), upper respiratory illnesses, constant congestion, etc. His eye blink tics very often coincided with him falling sick with something. In fact over the years, if he started blinking, my husband and I would remark to each other that "looks like he is fighting something". Usually his tics would last 2-3 weeks, at the most 4 weeks and then gradually disappear. This time, this new tic is still going strong. In fact it has gotten worse over the past 1.5 - 2 months. I have taken him back to get strep tests done and they have been negative (rapid and strep) on 8/15/2011 and 8/18/2011. Also, since last week, his muscles and body have been twitching and jerking in his sleep, thus not sleeping well either (he was never a good sleeper, but that could all be related to having chronic URI and otitis, too; also he grinds his teeth a lot at night). He is also more hyper and moodier than normal, and can be difficult to manage at times. I am guessing this is all related. My husband googled strep and tics and found that this could be PANDAS. We are to see Dr. Latimer next tuesday, but just wanted to throw this profile out to you guys and see what you all think. His pediatrician has refused to put him on another round of ABx because of the negative strep tests and is not completely on board about the PANDAS diagnosis. Please, I would love to hear your views and experiences relating to these symptoms. Please advise. thanks ANRmom

Hi T. Mom: I just PMed you before I read this reply on the forum. Please let me know details of this ped. thanks so much!

We have an appt with Dr. L later this month. But, I'm worried that the ped will not quite be on board in the treatment. I like the idea of setting up monthly appts, incase things crop up. Great suggestion! Does L consider T&A. My DS5 is still doing his coughing tic even after two rounds of AB. Should I take him to ENT consult prior to appt with Dr. L? thanks to all of you for your help! I'm still new to this and need all the advice I can get ANRmom

Hi, My 5 yo son's pediatrician is pushing back on the PANDAS/PITAND possibility. Can any one recommend a good pediatrician in the DC metro area who gets PANDAS/PITAND? thanks anrmom

Who is Dr. K? I am looking for someone in Md/Northern VA to take my 5 year old to. thanks ANRmom

Hello Eljomom, I noticed you said in your post that you see a specialist in the DC area. Can you recommend someone. I think my son has PANDAS and I want to get help soon. thanks in advance, ANRmom