worriedmommy

I'm wondering how they would use that to determine if she was a carrier? And, what did they decide about carrier status for her? The doctor told me that if dd was a strep carrier that she would ALWAYS come out positive on a throat culture. Since dd kept getting peri-anal strep, I kept getting strep throat and my son had just had his 3rd case of strep throat (by age 3) and twice didn't show symptoms, they figured someone in the family was a carrier. My husband, son, daughter and I were all swabbed at the time, and only dd's rapid came up positive. Then when her culture came up negative, they couldn't figure out what happened. They decided to swab both her throat and bottom again after the course of abx, and both were negative...so they told us that she was not a carrier. Recently I've seen posts saying that ASO and DNase-B tests are the best way to determine a carrier, and I'm seriously considering brining everyone in for that.

This exact same thing happened to my daughter last September. I had strep, and a week later my dd started showing signs of peri-anal strep. Her bottom was cultured and it came back positive. Before starting antibiotics they had me bring her back in to swab her throat b/c they were concerned she may be a carrier due to her recurrent peri-anal strep. They swabbed her throat with 2 swabs. Did one as a rapid, and sent the other out for culture. Unexpectedly, her rapid came up positive. This shocked all of us b/c she had no signs of strep throat. It is unclear why the other swab was sent for culture, as they don't do this when a rapid is positive, but it got sent for some reason. Two days later I got a call that the culture was negative. I asked how that could be since the rapid was positive, and the nurse could not explain it. At the time I didn't make a big deal about it since her peri-anal swab had been positive, so we had to finish the full course of antibiotics regardless of her throat. I did a little bit of researh and could not find any information on rapid false positives. I even asked another specialist, and they said the only explanation would be that they mistakenly thought they saw a line. Doesn't make sense to me. Like the others that have posted, I think it's more likely that they didn't get a good swab on the one that was sent to culture. My dd HATES throat swabs, and that particular time I had to pry her mouth open, during which time she bit me so hard that my thumb bled!!! Her peri-anal swab came bac

Unfortunately Elizabeth TePas is booking out to October right now. She only works 1 day a week. Too bad b/c we are desperately looking for an immunologist that knows about & believes in PANDAS for dd. We're in NH with Harvard Pilgrim HMO and would really like it to be covered by insurance. I've debated Dr. Fuhlbrigge, but understand he sees the need for high titers, which dd does not have.

How would I determine if dd's symptoms may actually be missed Sydenham's Chorea? Dd, age 5, had strep last September, and subsequently had presumed H1N1 at the end of October, and about 2 weeks later had an unexplained high fever for 5 days. Right after that she developed a tic cough that went away twice on abx. Then Feb 7, 2010 she had an explosion of motor & vocal tics (during a time where there were 11 cases of strep throat in her classroom --she was swabbed, but results were negative). Her tics included throat clearing, facial grimacing, neck extensions, abdominal jerks, leg movements, and small knee bends. In conjunction with the tics, she was extremely emotional, and was literally unable to sit still. We just had a doctor's appt on 4/2/10 with a GI doc, and the doctor mentioned that he could hear a murmur (which she's had for a couple of years) and an irregular heartbeat (which is a NEW development). I took her to her pediatrician last week so he could listen to her heart and he also heard the irregular beat. He wasn't overly concerned...but I'm worried. Given everything else that has gone one, could this irregular beat be a result of missed ARF, and perhaps her movements were Sydenham's Chorea? Anyone out there familiar with Sydenham's Chorea or ARF? I've seen a couple Sydenham's Chorea clips on You Tube, and dd's movements weren't so "dance-like". Hers are definitely more jerkey.

I just received a reply from Madeline Cunningham today saying that she'll send out the test kit. My question is, how long does it take to get the kit, and can you simply walk into your local lab to have the blood drawn? dd was on a 20 day course of Biaxin in March, during which she showed remarkable improvement in behaviors, anxiety and tics. She's been off for 2 weeks, and while she's not as bad as she was pre-Biaxin, she's much worse than while on the Biaxin. Dr. T had her on a motrin regemin for the last week, which didn't help much. Our next step is azith with a prednisone burst, but before we start that I want to have the Cunningham test. I don't want any abx or steroids affecting the test, so I see this as our window to do it. Can anyone tell me how long it took to receive the test? Also, was there difficulty in getting a lab to draw the blood? Finally, is there anything else that can affect the testing. Dd is having an endoscopy on the 14th, and will be under general anestesia (sp?) for it. I want to be sure that won't be an issue.

Regarding the strep in the gut- not that I know of but I figure it has GOT to be there- it is where all his pain starts and is focused- he never has a sore throat from it- do you know how they test for that? OR should they have been able to tell with the Endoscopy? Brandy Hi Brandy, Welcome to the board. My son had(has?) strep in his gut and they found it through a comprehensive GI panel. He also had elevated titers (have they run those on your son?) I would say try to keep him on antibiotics until you see the specialist. It is very important that you test the whole family to see if anyone else has it. Even on antibiotics, if they are exposed the symptons will remain. I am sorry your son is going through this, but doesn't it feel better when you know he is not doing it on purpose? I would get so frustrated with him before we figured out what was going on. It is hard still when he is having a bad day, but at least now we know. Isabel NO titers run yet and good to know about Comprehensive GI panel- God there is so much to learn my head is swimming. However my son came back from Florida- last day of his antibiotic and can I tell you how calm he is- had a great day at school!! he is just SOOOOOO much calmer- my child is back!!! let's hope it stays this way!! if that is not a sign that Strep has something to do with his behavior I don't know what does!! What is a comprehensive GI panel? My dd just saw the GI doctor for the 1st time on Friday, and she's scheduled for an endoscopy on April 14th. Is there something specific I should ask for before they do that?

Yes, my dd did show pretty substancial improvement on Biaxin...especially after day 14. Unfortunately, it was only a 20 day course, and we've seen many tics and behaviors creep back in the past week and a half since the course ended. Dr T didn't want to keep her on Biaxin long term b/c it's so powerful. (She was also getting daily headaches while taking it.) He did mention possibly putting her on a longer course of lower dose azith with a steroid burst. So, maybe I'll push for that. Her worst symptoms are tics. At her worst she was having over 10000 a day, and they were very noticable. Anxiety and subtle OCD issues were there too, but much more easily overlooked than the tics. The tics are less violent in nature now, but since ending the Biaxin they've crept back to occurring every 3-5 seconds all day long while she's awake. I'm nervous b/c we were just at a GI doctor on Friday, and he said that her heart beat changed every time she ticced. He called it an irregular heartbeat. She's never had an irregular heartbeat before all of this started. The GI doc didn't seem too concerned, but I'm not sure he understands that she is litterally ticcing every few seconds. I'm definitely concerned, and want to know if this is putting undue stress on her heart.

Are some ilads doctors NDs? I went on www.ilads.com and asked for a local recommendation. They provided a ND which is in my hometown. This is very convenient, but want opinions as to whether I'll benefit more or equally from an ND rather than an MD.

She didn't call it a lump, but has said it felt like something was stuck in there. Main difference from your dd is that my dd had no complaints while on Biaxin...only before and after the course of Biaxin.

Last fall, before we even knew what PANDAS was, my entire family was tested via throat culture to see if anyone was a strep carrier since we have had so many bouts of strep in the past few years. Everyone's 72 hour culture came back negative, so we were told that none of us were carriers. I've read a few posts saying that families all had ASO titers tested from every memeber. Is this necessary if everyone's culture was negative? Can you be a carrier and have a negative culture? I'd like to avoid a blood draw from everyone if it is not necessary, but obviously will demand it if the culture may have missed something. Please let me know.

I'm not sure why Dr. T only perscribed a 20 day course. We're still very new to all of this. After ending the Biaxin, and seeing some tics & behaviors creep back we had a follow up phone consult with him. He now has her on a week long course of just Motrin to see if it has any effect. (She's on day 5 right now, and the Motrin does not seem to be helping at all.) I'm supposed to follow up with him at the end of the week, and he had said that if there was no change with Motrin, then we'd likely move onto azith and or a steroid burst. I really don't know what the right thing to do is. Her tics & behaviors are much better since takin the Biaxin than they were prior to it. I'd say she's at about 85% right now...and so much better off than many of the other kids I've read about on this post. She can go to school and function well. Perhaps her age (turning 6 this month) helps as her friends seem to not notice her tics (that are so obvious to me). This being said, I'm not going to be satisfied until she is 100% better. I want NO tics, and for her fears and anxiety to be under control. I just don't know what will get us there. IVIg scares me, but she does have low total IgG & low IgG subclasses 1 & 4. Couple that with a history of chronic sinus, throat, ear infections, asthma, allergies, rashes, etc....perhaps something like IVIg would be really good for her. I just don't know!!

Do you have any idea what the rash is? My daughter keeps getting a rash that looks like patches of poison ivy on her knees and elbows. It is EXTREMELY itchy! It first started in Nov 2009, and has gone away and returned 4 times since then. The dermatologist originally diagnosed it as Gionotti Crosti, since it followed an illness. However, from what I've read, Gionotti Crosti is not horribly itchy, and it usually doesn't come back. Oh...I should also add, that when this rash goes away, it peels. Does this sound like your son's rash?

My dd had both IgG & IgM positive for band 41, and IgG positive on band 66. Of course, the test was not Igenex, so based on the Western blot we had done, her overall results are interpreted as negative for lyme. What bothers me is that she's testing positive for ANYTHING. Am I missing something, or should a positive result for any band warrant further investigation? How do I go about getting the Igenex test? What would I ask for? Also, how much does it cost?

She's actually on a daily course of Motrin per instruction from Dr. T. We're trying this out for a week...just started Friday. So, it's still happening even with Motrin. She's been to an ENT and a gastro doctor. She's also supposed to be getting an endoscopy later this month (waiting for a date from the doctor). So, hopefully that will uncover any possible issue related to this. What I find interesting is that she often had to spit food out as a toddler. Not all the time, but at least 4-5 times a week she'd gag on food and have to spit it out. This happened until she was 4 and had her tonsils removed. After that the gagging & spitting stopped (along with a handful of other behavioral issues). We were told that removing her tonsils allowed more passage in her throat, which was the reason her gagging stopped, and her behavioral improvement was likely a result of better sleep post tonsillectomy. She's now almost 6 and these symptoms have just returned in the past 2 months...along with the onset of multiple motor tics. Dr T had her on a 20 day course of Biaxin, and she didn't have any gagging issues during that time. She's been off Biaxin about 10 days now, and the gagging (and some tics) are back.

She is not coughing at all. It's like she starts to swallow the food, but can't get it past the back of her throat. So her gag reflex moves the food back into her mouth and she then spits it out. I asked her what it feels like, and in her words she said it feels like there is something in her throat pushing the food up when she tries to swallow it.

She doesn't seem to have any difficulty swallowing liquids. Actually, when she has had trouble with swallowing food, I've told her to sip her water or milk, and that has seemed to be easy for her and actually got rid of the feeling in her throat so she's been able to resume eating. I can't seem to find a pattern to what brings on this feeling for her. This past Saturday she started lunch with a banana, which she ate without any problem. Right after that she had an english muffin with butter, and that's when the hard swallowing started. (By "hard swallowing" I mean that it looks difficult for her to swallow...like someone with a really sore throat that has to do an exaggeratted swallow to get the food down.) The swallowing got so difficult she was chewing and then spitting the bites out. Finally, she decided she couldn't eat the english muffin, so I got her a yogurt which she was able to eat without any problems. The same thing happened last night with dinner. We had hamburgers, which is one of her favorite meals. After a few bites, the hard swallowing started...followed by the food spitting. She couldn't finish the hamburger, so she had a yogurt and a glass of milk. There are also some meals, like breakfast today, where she has no trouble at all. This morning, she had dry Raisin Bran cereal. She had a glass of water on the side, but each bite of cereal was completely dry...so one would think that would be tough to swallow. But it wasn't. Jag - what is SLP?

Just wondering if any of your PANDAS kids have difficulty swallowing. Since dd's sudden onset of what we think in PANDAS she's had numerous episodes where she simply cannot swallow. This usually happens during a meal, but has happened just with saliva. I know that some kids have a fear of choking, but this is not the case with my daughter. She just keeps having episodes of choking. She was on a 20 day course of Biaxin last month, during which she didn't have any choking episodes, and her multiple motor tics, and behavioral issues improved greatly. She's been off of the Biaxin about 10 days now and some of the tics and anxitety issues are back...and so is the choking. I plan on calling her pediatrician tomorrow b/c I'm afraid that one of these times she's not going to be able to get the bite up and be able to spit it out. Any experience anyone has with this would be greatly appreciated.

My daughter's lymphocytes were high. Range was 30-50, and her level was 59.

No, we have not done steroids. She takes a nasal spray with a steroid for seasonal allergies, but I'm told that this does not enter the blood stream like an oral one.

I'm very interested in getting the Cunningham tests for my daughter. Her titers are low, and she's been on antibiotics for over 1 month now. (Amox...followed by Biaxin). Has anyone out there had these done on a child with low titers while on antibiotics, and still have the results in the PANDAS range?

Thanks for the explanation. Our local neurologist raised an eyebrow when I tried to say that dd's sudden onset could be related to the 11 confirmed cases in her classroom. She felt that since dd swabbed negative, and had no titer response that was not possible. Luckily, I was expecting that response, had already spoken with Dr. T and am awaiting another appt in Boston tomorrow. I want multiple INFORMED doctors all agreeing on dd's diagnosis.

I'm fairly new to this forum, and to the term PANDAS. I'm one who only first heard of it last fall when Lauren Johnson was on the news with her sneezing tic. Oddly, I found her story b/c I was frantically researching to see what could have possibly caused my dd (age 5) cough tic. Aside from Lauren having a sneeze tic and my dd having a cough tic, their stories were almost exact. When I found out that Lauren's condition was liked to Group A Strep, I couldn't believe it, as strep had been a HUGE issue with dd. DD suffered from odd rashes in her diaper area starting at 17 months old. These were not your run-of-the-mill diaper rash. They were evil, red, itchy and DID NOT GO AWAY with diaper cream, anti-fungal cream, or anything the doctors would perscribe. (At around 18 months of age, dd had a DRAMATIC personality change. She went from a super happy, sweet child to a horrible, rage-filled, angry toddler within a matter of weeks. People said it was just the terrible twos setting in early...but this was EXTREME. It was beyond any bad behavior I've ever witnessed from my other child, any relatives or friends kids.) Dd continued to suffer from these off and on for 4 years...until she was officially swabbed and confirmed as having Group A peri-anal Strep this past July. It was treated, but came back...along with strep throat in Sept. She got sick with presumed H1N1 at the end of Oct, and the cough tic started in Nov. On my PANDAS hunch, I got her on Amoxicillin for 10 days in Dec, and the cough subsided. It came back as soon as Amox was done, so a month later we tried Augmentin for 10 days. Cough went away completely for 2 weeks. Then in early Feb she woke up one day with a vocal (thorat noise) tic and a handful of complex motor tics that were CONSTANT. Come to find out there were 11 cases of strep throat in her classroom. She tested negative that day and started Amox. as a preventative, but I'd say it was pretty clear the "canary" effect happened with her....although I still don't understand how that happens. We've since had a consult with Dr. T, who believes this is PANDAS or PANDAS-like. We're on day 11 of Biaxin, and the unexpected thing is that dd's mood and demeanor has improved greatly. Over the years we've grown to accept dd's "demeanor" as who she is. It's only now that she's on the Biaxin that I'm beginning to think that maybe my sweet child has just been buried under this disease for the past 4 years!!! She even said out of the blue this past weekend that her "naughty days" are over b/c she just wants to do nice things for people and feel happy all the time. When asked to explain she said she is just so happy and has never felt like this and wants to stay happy forever. Not your typical conversation with a 5 year old. We've even noticed improvement with other things we never thought might be related to PANDAS. She hasn't expressed her fear of starting 1st grade in Sept in days (she was doing this daily), she went upstairs in our house yesterday by herself, she told DH that she couldn't wait to get to school yesterday (another daily "dread" for her.) So, I'm left to wonder if these behavior changes ARE a result of the Biaxin. Her tics are still very frequent...every 3-5 seconds while she's awake...so over 10,000 per day. They are milder in severity than they were when they first started, though. I'm happy about that, but cannot get past the frequency of them. Anyone out there who's child suffered from constant tics? If she's having positive behavioral responses to Biaxin, is this a clue that tic improvement will follow? Believe me, I am happy and thankful for every baby step she's making. I just need to know that there is hope for these tics.

My dd5 has normal titers too. Tested in Feb, and her level was 13, even though she had 3 positive strep cultures in the 6 months prior to that time. Tested again 4 weeks later and level was 29. Still low...but a rise none-the-less. No idea what it means, and most doctors don't care as 29 is still very low. We've seen a local neurologist in NH who feels you must have high titers for a PANDAS dx. Ughh! Still, she doesn't feel dd has Tourette's. Had a consult with Dr. T who feels that dd does have a "PANDAS-like" illness, and put her on Biaxin. Seeing some positive effects from Biaxin...so we're encouraged. Off to a neurologist at Boston Children's Hospital tomorrow who specializes in both Tourette's & PANDAS, so I'm VERY curious what he will say. In my opinion, titers can help prove whether a child has had a recent strep infection. If you already KNOW they've had one, and titers are normal, then there's the proof that they simply don't always rise.

Just wondering if anyone knows what the abbreviation LYMP stands for on a blood test. I was reviewing my dd's blood test results from last month. I hadn't really looked at the results in detail as the nurse from the dr's office had called to say it was completely "normal". Typically they don't even send a copy of the results, but I had asked they pop it in the mail to me for my records. Anyway, in looking at everything I see that dd's levels fall in between all the stated ranges for everything EXCEPT the one labeled LYMP. It says the range is 30-50, and my dd's level is 59. It appears to be a sub-category under the CBCD heading, which I believe is Complete Blood Count Differential. I'm not positive though as it is a very user UN-friendly format. There is another one labeled TLYMPH, which I assume is T lymphocytes. Would LYMP then stand for just lymphocytes? Does the range 30-50 jive with the lymphocyte range? (I should note my daughter is 5.) If anyone knows what it stands for, please reply, as it's bothering me not knowing, and I can't call the Dr. until Monday. Also, what would a high LYMP mean? I should note that on another blood test we found that dd's total IgG level is low, and her IgG subclasses 1 & 4 are below the normal ranges. Not sure if these being low would tie into her LYMP being high? Any help is appreciated. Thanks!

Thanks for your responses. We used Motrin Tue & Wed because of the headaches, but didn't today even though she apparently had a headache this morning when she arrived at school. I'll start the day tomorrow with some Motrin to ward off the headache. Is there additional benefit from the Motrin? I've read a little about inflamation being an issue with PANDAS, but am not sure what the connection is. I will stick with the Biaxin for now. I know that time is often the best medicine... As I'm sure you can all relate...waiting just to know "IF" something is going to work is torture! One last question. We give her Culturelle probiotic, but have been giving her this at the same time as her antibiotic. I read on another posting that it should be given 2-3 hours after the antibotic. Is this true? If so, do you know why?