AmySLP

Dr. K e-mailed me back immediately tonight and indicated "yes" that it is possible to be a strep carrier and still have PANDAS. I'd still love all of your input! Thanks, Amy

After seeing a peds. immunologist yesterday, I have a very basic question for all of you based on your research and experiences. Can a child just be considered a "carrier" of strep (no classic strep symptoms or obvious illness), but have PANDAS, if they meet the other diagnostic criteria? My daughter had at least 6 positive rapid tests in the last 7 months, but without full-blown illness/strep infection. The ped. immunologist states that my daughter absolutely doesn't meet the criteria for PANDAS b/c she is just a carrier (her titers were essentially non-existent ASO=5, AntiDNAnase-B-negative (undetectable). HOWEVER, the doc. could not explain why her tics and behaviors have improved with every course of ABX and now prophylaxis ABX. Just told me to stop the ABX (indicating she's been on too many in her life already, they cause liver damage, and have adverse effects on the bones). Also told me to see a neurologist to look at the tics (which she did see during her exam). She also told me that tics can be typical in children her age (I have seen at least 1000+ children in the years I've worked as a speech pathologist, and have never seen tics in neurotypical children). It was with that comment that she lost her credibility with me. Amy

I'm metting with the pediatric infectious disease team today at Upstate Medical Center, Syracuse NY, for exactly this question. My pediatrician is adament that T & A is the answer (the ENT doesn't agree but willing to do the surgery based on the opinion of the immunology team). So I'll post my answer when we return today. I expect a good work-up, since the paperwork says to expect a 1 1/2 - 3 hour visit. We are scheduled for a T&A on April 1 (previously scheduled for Dec. 3rd but I cancelled after reading the research which didn't support it). I'm getting to the point where I'll try anything, even surgery, which scare me before. My daughter is doing well on the prophylactic ABX currently-Thank god I found this website and knew to request that from the pediatrician. Allison has not needed a strep test for over 5 weeks-this is the longest she's ever gone without getting "the stick" as she calls it! If I had only known to do this in late fall, I think the facial tics that are still present (although reduced) may not have developed at all. I have gotten so much infor. from others medical consults on this forum, I hope I return with some hopeful news. Amy

1. Looking back, I think my daughter probably had symtoms of PANDAS when she was 3 1/2, but as I posted in an earlier topic, my daughter had several strep infections prior to age 2, with the first at 7 weeks old! 2. My daughter was an earlier talker (two-three word phrases by 14-15 months) but I always chalked that up to me being a speech-language pathologist (however my second daughter is more typical in speech/language development). Also my daughter has cognitive testing last year (it is the procedure in NY for any child having evaluations for developmental concerns; she has sensory issues, which I realize now heighten with strep and are likely some PANDAS signs) Anyhow, she score about 120 (Test norms are 85-115 for average). ***I'm curious to see others responses, seems our children are somewhat similiar in these areas Amy

Can someone provide me with the contact info. for Dr. Perlmutter in VA? Does anyone know how far out she is booking for appts? Thanks, Amy

My daughter, Allison, was diagosed with her first case of strep at 7-8 weeks old.. I remember her doctor doing the test a second time b/c this was so odd. We assumed that the strep was passed to her by someone who attended her baptism, held the week prior to the diagnosis-i felt terribly guilty for letting so many people hold her that day. But then, over the next year, she had a few more positive streps. I think I counted at least 5 before she was two years old. As I had mentioned in my first post here, I believe she has PANDAS. Prophylactic ABX seem to be keeping symptoms reduced for the last few weeks. We are seeing a pediatric immunologist/infectious disease team next week and I'm curious to see what they think about these early episodes. I'm wondering if these support the whole "carrier" idea. Just wondering if anyone else's child has a similiar history? Amy

My daughter is scheduled to have hers out on April 1. I've really hesistated though, rescheduling the surgery yet again so we can see the immunologist first. My daughter never had enlarged tonsils or a sore throat, but she tests positive by strep culture every time. Amy

My daughter has an appt. with a pediatric immunologist/infectious disease team next Wed, the 11th. I explained all her symptoms issues in a post about 2 weeks ago. She is scheduled for a T&A on April 1st, but I've already rescheduled twice since last Fall b/c I wanted to be sure I was not having the tonsils and adenoids removed in haste (my ped. is really pushing for it, the ENT was hesitant) My fear is that if the tonsils play a role in the immune response, then removing them will be problematic. On the other hand, they sure haven't helped-she's been strep positive since last July/August and had mono. on top of that in January. SHe is on ABX daily b/c I asked for them based on the wonderful information on this forum. I will post the results of the immunology appt. next week. Amy

Hi! I cannot thank all of you enough who have provided me with such wonderful knowledge over the past several weeks as I have read so many threads on this forum. I have acted on much of the advice and have many appointments lined up. A brief overview of my daughter's story.... Allison is 4 1/2. Since last August my daughter has been diagnosed with strep via throat culture. For the weeks prior to that she was having tremendous behavioral issues, heightened sensory issues (hyperacusis-inability to withstand noise), and repetitive vaginal touching/itching. For weeks the doctors were treating her for a yeast infection, then a bacterial infection when the Nystatin did not work. THis began while we were at he beach, so the thought was she picked up some kind of bacteria from the water (no one else apparently was affected?). At that time, she had blistering in her inner thigh area. When that blistering would not go away after treatment topically, our pediatrician felt that it might be a staph/strep infection and put her on oral antiobiotics. That seemed to work to cure the blisters/rash. Then about three-four weeks later, the same behavioral changes, repetitive vaginal touching, and sensory issues. To make a long story short, this has been the patterning since that time. She is on oral antibiotics for 10-14 days and then on day 21-30 diagnosed again with strep via throat culture. The odd thing, my daughter has never had strep throat in all this or enlarged tonsils. It is now, in hindsight, that I have discovered what makes me suspect strep each time-it is these behavioral changes etc. Occasionally she also gets the strep rash on her chest. Come December 30th, 2008 something seemed terribly off with Allison( huge neck from enlarged glands, very fatigued, feverish, not responsive). Her pediatrician diagnosed her on the 30th with tonsillitis (for the first time) (tonsils were 3+ size) and of course, she was positive for strep (no surprise, but was not the primary diagnosis). Started on Antiobiotics and worsened over the next 2 days. Jan. 1st 2009-saw covering Pediatrician who immediately said it was likely Mono. Blood testing confirmed that on 1/5/09 with an Epstein Barr Panel. She was on steroids for the swelling and it was during that time that I noticed the eye tics. I can't say that they were present before. The MD said it was a side effect of the steroid, so we stopped that, but they have never gone away. I now suspect that these have been present for some time but that it was the week I took off of work to be home with her for the mono that made me take notice. These eye tics/blinking are now more exagerated and now also involve pulling the corner of her mouth upward as she blinks. During episodes of strep, I have also noticed some vocal tics (somewhere between a throat clear and a cough, but not loud-she barely initiates voicing). Since that time, we have been back to the same pattern with the strep. Two more in Mid-January and then February. I now have her on prophylaxis antiobiotics (the doctor prescribed Amox 400mg 2 tsp daily). This seems to have eliminated all but the facial tics, which are less exagerated at this time. From the pediatrician's standpoint, I have not made the right choice. SHe feels that the answer and the cure is to remove her tonsils. In October and late November, we saw a pediatric ENT (well respected) at Upstate Medical University in Syracuse, NY. He felt that b/c Allison did not have strep throat or enlarged tonsils, it was not warranted to remove the tonsils. The research and his cardiac and immunology colleagues do not recommended this as it is not shown to be effective. Exactly my opinion from all the research and info I had read. We did not pursue this path. My pediatrician completely disagrees with the ENT and myself for not doing the surgery. Since finding this website, I have made an appt. with an immunologist/infectious disease doc. (March 11th) and with a neurologist at Boston Children's Hospital who has PANDAS indicated as an area of interest and research. The ENT is willing to do the tonsillectomy on April 1st if the infectious disease doc recommends it. So here's my question.... On Feb 6th (a day after a new strep dx and approx. six weeks since the last dx. of strep via throat swab) I had the ASO and the other I can't recall the name of (---nase) and my daughter's results just don't make sense. Her ASO was 5 and the other negative (a number was not provided b/c it could not be detected). My understanding is that these titers should be elevated b/c they measure antibodies that should be there in the weeks/months after strep infection. My daughter has had 6-7+ positive rapid strep tests in the last 7 months. Shouldn't she have developed some antibodies and therefore have elevated titers? My pediatrician told me that she can't answer that. I am the one who asked for the titers. She says wait for the immunologist (who I scheduled the appt. with independent of her-no recommendation to pursue anything other than tonsillectomy). Can someone please help me understand these titer results? Amy