AmySLP

My daughter had a rapid strep test 2 weeks ago today. Positive on the rapid (the line was very faint, but the ped. said a line is a line, just like a pregnancy test). Here's the ironic part. HE expected the rapid to be negative, so while we waited a few minutes for the results of the rapid he prepared the other swab to be sent for culture. He sent for the culture anyhow (despite the positive rapid) b/c all the info was filled out. He tells me today that the culture was negative. Now my daughter just finished clindmycin this weekend and ironically began to present with scarletina rash on chest last night. It had been huge welt-like hives that triggered the strep test 2 weeks ago. She has had some mild PANDAS symptoms that she had last year at time of dx. Anyone ever experience this. My ped wants me to ask on this forum. He says it is not typical to send a positive rapid out for culture b/c they are supposed to be accurate. Now he's questioning if all the rapids my daughter tested positive on last year would have been the same on culture. And if so, what does that mean? He's perplexed and is asking me to call the specialist about this. I know I always get my best info. here. So what do you think? Any similiar experiences? Thanks, Amy

My daughter just finished a cycle of cleomycin yesterday for strep dx. approx 2 weeks ago. Last evening I noticed the classic scarletina rash on her chest and more diffusely on her belly. Some of you may recall that 2 1/2 weeks ago this all started with her breaking out in welt-like hives that covered her entire body over a course of a few days. I have been ill for a few days (sore throat, fever, achy joint, headache), saw a doc who decided to treat me for strep even though the quick test was negative b/c based on the looks of my throat and daughter's recent dx. he thought it was certain. Is it possible that she recontracted this from me while still on the ABX. Her doc chose cleomycin b/c it was successsful in getting rid of her strep last year after 7 months of failure with ammox. by her former ped. It's obvious she needs to retested for strep, but then what? SO what does of azith (or other med) for treatment of acute strep? What dose for prophylaxis? How often to retest or when for strep? Thanks, Amy

Back some time ago I remember responding to a post asking about children with early and chronic dx. of strep from infancy. When we are all talking about sudden onset and normal developmental behaviors, how do you weed these out in a very young child. My daughter (5), dx. PANDAS at age 4, had several episodes of diagnosed strep before age 3. Her first dx.-- at 8 WEEKS old, again at 4 months old and so on through age 3. She had some quirky behaviors, primarily hypersensitivity to sounds and some other of what we all joked to be "type A" personality traits even as a two year old. I have always considered her a sudden onset case, b/c I can pinpoint the third week of July 2008 as the point where she exhibited habitual and OCD behaviors that I had never seen before, but in hindsight I wonder if those things that we thought were her "personality" developing as a toddler, were a result of this really early onset and chronic strep pattern since infancy. It is not typical for pediatrician's to test for strep at early ages-I was fortunate to have a doctor who did. We treated those infections (I do wonder if any were missed) but my daughter still developed PANDAS at age 4. So now it makes me wonder-Was my daughter's case a sudden onset or was all this brewing until she had an exacerbation in July 2008 at nearly age 4, when new symptoms that were too obvious to ignore or call "personality" issues arose.

I have been worried about RF. I had a long conversation with a nurse last night at work about how I plan to call the cardiologist today. Last year when we saw Dr. Latimer she got us an immediate appt with a cardiology colleague of hers to look at Allison b/c during the summer of 2008 her strep was misdiagnosis for about 6 weeks. The cardiologist ruled out any cardiac damage from the strep. I was thinking shouldn't we compare a new diagnostic cardio test with last years to be sure. My mom suspicions are that my daughter has had this strep for a while and that it has been a symptomatic with the exception a few few isolated fevers that were coming and going over the last 2 months. Her kindergarten classroom has 25% of the kids dx with strep since late Dec/early Jan with recurrence in 2 of kids. The school nurse called me about a month ago to ask me if I had Allison tested for strep-I called the ped. who did not think it was warranted without symptoms, even though I really wondered about that decision. Last p.m. and this a.m. my daughters "hives" look more like large reddened areas. They are less itchy, covering her face, head and neck AGAIN and diffusely throughout her body. They are less raised like hives and now I don not see the distictive fluid filled center of hives. I have been looking at pictures of the rash that comes with RF/scarlet fever and it does resemble it. I wondered if I should call a local dermatologist/immunogist that my other daughter has seen to see if she would take a look at her today. I will definitely be calling the cardiologist, but he's in the V.A./ Washington DC area-hoping he can order a test(s) if needed here locally. Thanks for all your information-it's truly what's keeping me going! Amy

Thanks to all of you who gave me the belief that hives can be a symptom of strep that I felt comfortable enough saying I thought the test was necessary prior to leaving the peds. office. After 4 solids days of worsening welt-like hives that covered every surface of my daughter's body, and isolated fevers off and on for a few weeks absent of any other symptoms, the culture came back positive. Our ped. was going to refer me to an allergist. He was shocked to find the quick test positive, which made me immediately tear up. When he said she's got strep I thought here we go... back to the nightmare of PANDAS. I thought we had really left this PANDAS/strep behind us~ it's just days shy of one year without a positive strep test. We saw Dr. Latimer on April 2nd of last year. Clindamycin was successful for Allison last year, so he chose to go right to that, as scary as the potential side effects are. I hope we caught this early enough to avoid the return of her PANDAS symptoms. I'm wondering where we go from here...back to regular strep testing, prophylaxis ABX? This isn't a trip I wanted to take again! Amy

I did look this up...She has really no other symptoms...My dad has vascultitis several times over the last few months..her appears more hive-like rather than rash-like as in vaculitis that i've seen. Thanks, I'm willing to look into any ideas.

How old is your child? Developmental stuttering can be normal in preschoolers. Is your child repeating the beginning sounds in all words when going through these episodes or just the /m/ sound? I don't see why it couldn't be a symptom like that of a verbal tic. My daughter had verbal tics during her exacerbations of PANDAS that would be a distinct glottal sound. If your noticing the stuttering in conjuction with other symptoms and never when your child is asymptomatic, I'd be more apt to say it's PANDAS related, but stuttering can be episodic too. I think the presence of concurrent symptoms is key . I am a speech-Language PAthologist, although I'll be the first to admit that stuttering is not an area of expertise for me. There is another mom on the forum that I know of who is an SLP working with school-age children; she may be able to give more info than me. Amy

I am not familiar with Myco. but I will google it. My daughter has continued every 12 hours or so to get different looking hives in various places. This am it was nearly 75% of her face covered, in addition to the large, welt-like areas that are popping up on her shoulders, legs and arms. This am I'd estimate her body was in all likely 50% covered in hives. I gave 1 tsp of benedryl and within 1/2 hour all were gone. I called a nursing hotline to see if they recommend we see a doc. today. This nurse felt testing was warranted but not an emergency unless Allison complains of stomach pain and has swollen eyelids. SHe did have the swollen eye lids yesterday, but I think they were from hives and she hasn't complained of stomach pain at all. I did e-mail Dr LAtimer who dx her last year with PANDAS to see what she'd recommend. I'm hoping to get a response or I'll call her office tomorrow. As always I appreciate the insight everyone on this forum has to share, Amy

My daughter never did respond to Augmentin, Althoug it's been 12-16 months so I don't remember the dosage. Her doctor went back and forth between Amoxicillan and Augmentin for nearly 5 months until I found this site and heard of PANDAS as my daughter got sicker and sicker. We met a covering doctor, a pretty recent medical school grad who actually heard of PANDAS. He suggested trying Clindamycin-I know from reading this forum that it doesn't work for every child-and it tastes and smells awful. It worked for my child though-I consider it her cure. It's pretty scary stuff with a whole lot of potential GI side effects-but all these treatments have potential side effects. After a round of this my daughter never needed anything else. She was 4 1/2 at the time and had the strep about 7 months. Don't give up hope, Amy

No I'd say no anxiety at all! She's so absorbed in Easter Festivities that other than the intense itching prior to benedryl dose-it's like nothing else is wrong.

No they didn't and I asked about that when the first topical they gave-Alabax I believe it was-did not work. It is specifically for Impetigo, so I wondered if that was truly what it was. I am a speech-Language Pathologist in a long-term care/rehab setting and my husband a dietitian who deals with wound care in his facility. We talked about the fact it should have been cultured. They put her (my non-PANDAS child 3 y/o) on an oral ABX-for the life of me I cannot think what it was. She is cleared now with the exception of scarring. I bathed by girls together, until the day the area was called Impetigo, which I knew was contagious-but my daughter never got that rash anywhere else on her. Could my PANDAS dtr. be trying to fight off whatever infection my 3 y/o had?? Colleen, now I remember that when my daughter was dx. with EBV, she was initally diagnosed with tonsillitis (& strep of course) 2-3 days before-She was on augmentin and got the rash from the combination of those two. The other thing about these hives-they seem to come every 12 hours like clockwork-no matter how much benedryl I give- This am I gave her only 1 tsp which kept them at bay until about an hour ago when they started to flare AGAIN! Yesterday I was giving 2 tsp. b/c I was afraid, but it was knocking her out-she slept last night for 14 hours. Thanks for your input, Amy

Buster, Thanks so much for your response...the hives are huge, welt-like. The initial night they were on her joints/bony areas (back/front of knees, elbows and one shoulder near the joint). The day previous there was one on her face. SHe seems to break out from them approx. 12 hours after a dose of bendryl. She slept for about 13 hours (5pm-6am this AM after the 4:40pm dose of benedryl yesterday PM). Woke this morning with more hives, even larger and more plentiful in places other thatn the joints (front of thigh, forearm ,buttocks, neck/shoulder region). I treated with half the dose (1 tsp of bendryl) which are keeping them at bay without making her extremely fatigued (She wanted so desperately to go to an Easter Egg Hunt today). I thought momentarily about taking her to walk-in clinic but thought how difficult it would be to explain PANDAS to some random person (but what a great education it would be for them) just simply to get a quick strep test and the culture started. Our ped. wanted to wait until MOnday if the hives continued. I took pictures of the hives this AM....Can pictures be posted on this site?? I'd love to share them to see if anyone has seem anything like this before with their kids. I have not changed anything recently with her...no new detergents, foods or anything. We are in NY and have frost and snow even the last few nights so it's not hayfever or allergies-MD did agree it was likely viral or some type of infection...My other daughter had a staph infection 2 weeks ago-simple spot of Impetigo from a scratch and I asked about this but the doc. felt she'd have symptoms of Impetigo rash- I did remind him that her reaction to strep was nothing like that of typical kids so whose to say she'd present with this typically. LEt me know about posting pix... Thanks so much, Amy

No ABX for nearly 9 months for anything...But here we are 12 hours after the last onset and these huge welt-like hives are back. The doctor did not feel it was warranted to test for anything yet...he says if they persist through the weekend he'll order tests on Monday. Wondering if I should have pushed for testing today! Thanks Colleen, I remember you were extremely helpful to me when I first came on the board. I appreciate your input.

I haven't posted on the board in quite sometime. My 5 1/2 y/o daughter has been free of PANDAS symtpoms for nearly a year. There has been an outbreak of chronic strep in her classroom at school, primarily 2 kids with recurrent strep, but the nurse said there has been 6 total (my daughter unbelieveably not being one of them). My daughter has not shown any of the symptoms she had last year (facial tics, vocal tics, OCD behaviors) at all-she has though in fact had some random fevers, ironically they seem to come the same day I get the note from school that there is a new case of strep in the class. Two nights ago she had a huge hive on her face, this morning an hour ago at 4am she awoke with large, welt-like hives on her arms and legs. She has had somewhat chronic mildly bloody noses, and more so the last few days. My pediatrician has not felt we should test her for strep b/c he feels she would demonstrate the PANDAS symptoms and we would obviously know. SHe now has these "soft" symptoms that make me wonder if she should be cultured for strep. The school nurse has called me twice, wondering if Allison is a "carrier" of strep and that's the reason the class is having this problem-my pediatrician says no way b/c if she had strep she would be symptomatic, but now I'm wondering if these are symptoms. She is so difficult to get a throat culture from-she has so much fear of "the stick" as she calls it-She likely had about 30 throat cultures in the 6 month period that we battled strep and PANDAS. I'd appreciated any input you all have if your child has experienced anything similar. Thanks, Amy

My daughter, Allison, then 4 1/2 had EBV diagnosis approx. 5 months into her battle with PANDAS. Just an important note to parents-if you suspect this, be sure you doctor orders the EBV panel bloodwork to be done. Our pediatrician suspected the EBV and ran the "quick" test once which was negative. Then the following day ordered more lab work doing both the "quick" test and the more sensitive panel (which took several days to get results) and sure enough, she had EBV. Interestingly enough, I am on the board searching if underlying EBV, which truly nevers goes away, can cause hives. My daughter has been free of her PANDAS for nearly a year but there has been a chronic strep outbreak in her classroom for the last several weeks. She's been getting some odd symptoms like random fever, large hives on her torso, face and especially extremeties, bloody noses. Wondering if this could be her body's reaction to strep or EBV, although I saw none of these symptoms before.

We had the same experience with our daughter earlier this year. I thought there must have been lab error. Our daughter had 7-8 positive rapid strep infections over a six month period. When I was finally told by Dr Swedo (I e-mailed her at NIMH regarding my daughter when I was at my wit's end) to have these lab values tested, to my surprise ASO was negative and antiDNASE was negative, not even detectable. Our neurologist retested these about 6 weeks later to find similiar results. I have no idea why but these antibodies clearly do not elevate in all kids. My daughter is experiencing a relapse of her PANDAS now (after nearly six months of being symptom free). Amy

I am very fortunate not to have needed to access this board over the last 3-4 months. My daughter Allison who is now almost five, contracted a strep infection nearly a year ago that remained chronic until march of this year. Over six months time she had 6-7 positive strep cultures and the Epstein Barr virus (Mono) as well. For over six months she demonstrated worsening symptoms of anxiety/OCD, facial tics, and emotional lability, that really peaked when she was off ABX (ammox. and augmentin). She was diagnosed with PANDAS in early April by Dr. Latimer (neuro. in DC). This was three weeks after being given Cleocin by a doctor covering for her regular pediatrician. Thank God for a new doctor just out of medical school who had actually heard of PANDAS (he's now our regular pediatrician). At the time we saw Dr. Latimer, Allison's symptoms were mild in comparison to what they had been prior to the Cleocin. By the end of April, she was symptom free of strep and PANDAS. We are very thankful that we never had to get to IVIG treatments....But, b/c Allison does have this history, I am extremely scared as she will start Kindergarten in 7 weeks that she will be exposed to strep and this ugly monster will reappear. Any ideas or info. or referrals to someone to find ways to boost her immune system to try and ward off strep/PANDAS? Thanks so much, Amy

I read this article, it was e-mailed to me by a friend a few days ago. I thought it was odd, b/c I was given a referral to a neurologist there at Boston Children's (dr. Alcie Torres) who is supposed to have an interest in PANDAS. It struck me as odd that this immunologist wrote the article, with a push toward psych. and no mention of his colleague, Dr. Torres, who is seeing and dx. PANDAS. Although at this time I've canceled my appt (We saw Dr latimer in DC), we were scheduled to see Dr. Torres in July (it was quite a wait, as I scheduled that appt. in January). Maybe it's worthwhile to ask if he's aware that there is a neurologist who's treating this at Children's there. It's such a big hospital, that he may be unaware of this doctor dx and I would hope treating PANDAS. Just a thought. Amy

I called CHOP (Children's in Philadelphia) a few weeks ago, for an appt. with Dr. Elia. She is not taking pts. at this time, only doing research. Her office indicated she might (and emphasized might) start seeing pts. again in July. Also, we saw Dr. Latimer and were really impressed. Amy

My daughter also c/o leg pains, but as with all her other symptoms, these wax and wane as well. After 5 cycles of amox. in 6 months, we had a doctor who prescribed Cleocin, which to date, has worked to clear her chronic run with strep. (research though has shown Azithromycin to be one the best choices, as others on this board will likely point out). Had I known this sooner, I would have put an end to all that Amoxicillian much sooner and asked for Azith. Allison has not had c/o leg pains since the Cleocin, as well as a significant elimination in all PANDAS symptoms. We have now gone for nearly 8 weeks without a strep diagnosis-the longest since this all began last July. I was concerned about RF as well (my sister had it as a child in the early 90s). We saw Dr. Beth Latimer (she's in Bethesda, MD). She dx. Allison with PANDAS and felt that all these chronic strep kids should see a cardiologist to ensure there hasn't been RF or scarlet fever that resulted in heart damage. She set us up with a wonderful cardiologist the next day, who fortunately didn't find heart problems that were a result of all this strep. RF does still exist. In fact, I recently read an article about a surge in it. Dr. Latimer recommended a low dose of Azithromycin prophylactically for at least 6 mos- one year. I hope you can find a good primary care who is willing to research and learn. In all of this, I learned that my "wonderful" pediatrician who everyone in my community thought was so good, really wasn't. I had to make change to someone who was willing to listen to me and help me navigate all this to heal my daughter. Let me know if I can be of more assistance, Amy

Your child's initial symptoms on Jan 19th (swollen lymph nodes, fatigue, fever, sore neck ) sound a lot like what my daughter went through around New years. Our pediatrician diagnosed it as tonsillitis and, of course, strep culture was positive. When thinks were no better with the Augmentin on New Years Day, we saw a covering physician who said Mono. and the Epstein Barr panel was positive for this virus. THe other odd similarity, my daughter ended up with the rash too-a rxn. to the augmentin (penicillin) and Epstein Barr. In fact, the doctor who saw the rash on Jan. 7th couldn't believe they hadn't stopped the penicillin type ABX and changed to a different class of drugs b/c it is a possibility for this reaction. Allison's rash was "goosebump like" all over her body, but highly concentrated on her hands, torso, legs, & feet. The rash took several weeks to completely clear. The rash never itched her, it just looked terrible. We knew this wasn't a reaction to the penicillin itself, as she had been on it many times before and has since then. Just curious if your child's rash was similiar-I've been wondering about the Epstein Barr connection to all of this? Could it be possible that this was te virus he had that went undiagnosed? My daughter was clearly Mono, as she lasi on the couch with fatigue for at least 4-5 days straight, with a huge swollen neck. She has never gotten sick with the strep (only behavioral symptoms) so it was clear we were dealing with something different. Amy

We had a wonderful experience with a covering pediatrician last Sat. Based an e-mail I received back from Dr. Swedo, she recommended we d/c the Amox. prophylaxis for three days and then culture. THis happened to fall on a Saturday, therefore, we saw this wonderful new doctor who was on call. Prior to doing the culture, I asked him what he knew about PANDAS. WHen he could rattle of some of the basics, I felt relieved. Finally a doctor in my community that knew something about it. He told me he had recently attended a seminar in Albany, NY where this was one of the topics. He indicated that what he took from it was that although they don;t really know the WHY yet, what the research shows is that for some unknown reason these kids respond to antiobiotics. The doctor who presented impressed upon him that it was important to treat these symptoms (even though Allison was negative with this culture-I knew it was too soon but wanted to follow Dr. Swedo's advice). He suggested we try Cleocin b/c it was the strongest. I told him that Dr. Swedo suggested that the next time the strep was positive, she said our pediatrician should follow the "red book" for treatment. I looked at the "red book" there were several treatment options, I'm not sure if Cleocin is one of the forms of drugs recommended for kids that are allergic to penicillian. This doctor took all the research I had with me to read over. Said he'd research the whole T & A issue (which my current pediatrician is not willing to do)but suggested we hold off with surgery to give these other ABX a try. He gave me his e-mail to keep him posted. I e-mailed him today asking him to consider taking Allison as patient (his receptionist told me they're not accepting new pts.) He's gotta take her b/c I've had it with my current pediatrician. I had been thinking it was time to switch-so finding him was an answer to a prayer! Any insight/experience with Cleocin? Thanks, Amy

My Pediatrician will continue to prescribe, as long I go through with the T & A on April 1st. I'm really feeling torn on that issue too. (I've read all the posts on here, but struggling with the fact that my daughter is a "carrier" and so will the T & A actually help (this immunologist advised strongly against it). I did not give ABX for 48+ hours at this point. I don't know if it was just my belief that all this would return soon after or if already my daughter is showing increased behaviors. I videotaped her this evening for the first time, in one of her absolute meltdowns over several trivial items. I hadn't seen one of these in weeks. Her facial tics do not look increased yet, but the babysitter did report her ritualistic/repetitive behavior of vaginal touching/itching resumed today-Could it be coincidental? (I think I know the answer to that.) We decided to stop the ABX for a few days and document daily with a journal and video camera to have "evidence" the next time we see someone. Hoping to get an appt. with Dr. Latimer in DC in the weeks to come. Thanks for all your input...It helps me to keep forging ahead with this Amy