worriedmommy

Just recently my PANDAS dd6 has started to have urinary frequency. She is constantly telling me she has to go...even as she is pulling up her pants from her last pee. It's gotten to the point that she does not want to go. She's constantly saying "I have to go potty, but I don't want to." I've asked her why she doesn't want to, and she just says "Because!". My guess is that she's simply sick of going. I know that urinary frequency is a fairly common symptom of PANDAS, but up until now she has not had it. Does anyone know if there is an underlying reason for this. I thought maybe it was a urinary tract infection, but she's currently on both Omnicef & Azithromycin, so this is probably not the case. I want to be sure I don't write off this as a PANDAS symptom if she really has some sort infection. On the flip side, I don't feel like a million more tests and Dr. visits if this is simply a result of PANDAS.

Just as a matter of full disclosure, this is worriedmommy's dh. I don't have my own user name and have never posted as my dw will from time to time, but I saw this thread and thought it worth throwing in my two cents as I can't help but think my dd's PANDAS could have possibly been headed off or learned of much earlier. My dd had an undiagnosed perianal (i.e., anal and vaginal area) strep infection for nearly three months when she was 5. It was flaming red and she was extremely itchy for months before a nurse finally mentioned that it could be strep. After many trips to the doctors, including a vaginal dermatologist, her pediatrician went so far to tell us she was "exploring" herself. We don't see that pediatrician any longer. We were never aware of the possibility of skin strep infections until the nurse mentioned it, and our dd was finally swabbed with the culture coming back with heavy growth. It cleared up with antibiotic. Her anal and vaginal area was swabbed using the regular Q-tip type swabs used for the throat. We believe she had multiple perianal strep infections since she was a young child (and when looking back she had some serious behavioral issues for an 18 month old) and this possibility was even mentioned in her doctor notes at a very young age, but was never relayed to us and a test was never done nor recommended. We thought that we were always battling diaper rash, but none of the typical diaper rash remedies would work. Looking back, the only time it subsided or cleared up was when she was taking antibiotic for sinus or ear infections. We never put it together becuase we were always focused on the high fevers and pain associated with sinus/ear infections. FYI, I have read (can't remember where) that ASO titer will not be elevated with skin strep infections because the cholestorol in the skin absorbs it. I believe this is just one solid reason why the lack of high ASO titers can't rule out PANDAS, and our dd seems to be the poster child for such (she has also had positive throat cultures in the past, but again, without high ASO titer). This was one of the messages that we heard loud and clear at the Autismone conference in May from a few of the doctors, including Dr. Swedo. I think that more doctors who are learning about PANDAS for the first time from parents like us need to appreciate this during the diagnosis phase. Of course, we all have to keep in mind that high ASO titer does not definitely mean PANDAS.

I spoke with the director of the daycare and the teacher yesterday. Today the teacher is going to be dd's partner, which is good b/c she'll have a chance to feel dd's hand squeeze tic. Going forward, she's going to be sure to only pair dd with a few close girl friends, who are very understanding. I've asked that dd and partner always be at the front or end of the line where a teacher can be close to listen if there are comments/problems on the hand squeezing. As for the teacher not believing, it's mostly a matter that she really is very unobservant, so she says that she doesn't see or hear anything unusual from dd. Even last Feb when dd was doing kneebends across the room the teacher "didn't notice". Also, when dd's anxiety/fear was so extreme that she was afraid to go to the bathroom alone and would up wetting her pants 2 days in a row, the teacher still didn't seem to think that was overly concerning. Luckily the teacher's aid is great and she worked out a system with dd where she stood directly outside the bathroom, and kept track of the # of trips to be sure dd was going enough. Thankfully that fear has subsided and is no longer an issue. I really think nothing will convince this teacher. At this point I'm just trying to get thorugh the next 5 weeks until 1st grade. Dh and I have spoken with the new school and they are both aware of PANDAS, and are very sympathetic and understanding. They are very committed to making dd's experience in the school a happy one, and are going to work with us on a 504 plan for her. Thanks all on the other replies too. I would like to address this to dd's 1st grade class in a matter of fact way so they can look past her tics and see her for who she is.

I wondered about the milk maid grip, as I've heard this term before. Is it important to determine if it's a tic or choreiform movement? Thanks for the other advice. I plan to speak with the director of the daycare first, and will explain it as you said (without the word PANDAS). Hopefully we can agree on a solution so it's not an issue. The next trip is tomorrow!!

That's a thought. I'll run it by the teacher. It would be great if they could do something for the whole class so that dd isn't singled out for having to hold something other than a hand. (I just want her to feel "normal".)

Are "blips" from losing teeth really bad? I'm curious b/c my daughter just lost a tooth on the 3rd of July and we've definitely had a set back this month. We also switched up antibiotics, so I've been blaming it on that. We went back to the original antibiotic last Wed, but she's still not doing great. I've been wondering about the possible tooth connection since a major exacerbation in April occurred while she had a tooth dangling and then falling out. However, at the time her brother had strep, so I attributed everything to that. I guess I'm just curious about others who's kids are losing teeth. Does it often lead to an increase in symptoms?

Looking for help here. My 6 year old daughter is in daycare for the summer, and she goes on field trips twice a week. They walk to the events and she has to hold hands with a partner. The problem is that one of her main tics right now is a hand squeezing tic (she does this on both hands). It is barley noticable to others, so her teacher and friends have not yet noticed this tic. BUT...when she holds someone's hand she squeezes 5-6 times, then relaxes...only to do it again a few minutes later. She told me last week that her partner kept asking her to stop squeezing his hand, to which she replied that she couldn't help it. The boy didn't believe her, so he squeezed her back. I don't think it really got out of hand, but I have a feeling that this is going to be a problem with every trip. We only discovered that she has PANDAS recently, and have been explaining it to her in pieces on a 6 year old level. She doesn't even know the words tics or PANDAS. She only knows that strep affects her differently than others. In her words the strep "buggies" fight her brain and sometimes "flip her angry switch" and make her body do things she doesn't want or mean it to do. Any advice on how to deal with this. I plan to speak with her teacher, but am afraid it might fall on deaf ears as I honestly don't think that she believes in PANDAS.

Thanks for your replies. I agree that VOCALS are the worst. Her cough/throat clear was like nails on a chalk board to me and dh. Even now she'll do a throat clear here and there and I immediately tense up thinking that the CONSTANT vocals will be back. Thankfully, for now they're not. The motor tics for now are so mild in nature...a drastic difference from the abdominal jerks she had a few months ago that made her cry at times they hurt so bad. Poor child...it is simply not fair for any of these kids to deal with this disorder. The connection to yeast in interesting. Dd starting scratching her head and body violently a few weeks ago. Dr. B though perhaps it was yeast and she's now on Diflucan daily. We're on day 8 of diflucan and the scratching has reduced, as has the frequency of her motor tics.

Looking to hear from anyone whose main PANDAS issue is tics. My daughter's main issue is tics (although rage, mild OCD and fears are part of her PANDAS package). At her worst she had a tic-cough, throat clear/grunt every few seconds all day long while awake...so upwards of 10000 times per day. It was so easy to track her tics b/c we could hear them. A steroid burst in April brought an end to her 6 months of vocals, and she did great for a few weeks. Then slowly we started to see new tics creep in like eye rolls, and shoulder shrugs. Because these movements affected the way she looked we could still track/count them easily. This past month her tics have morphed again to mostly include hand squeezes and toe scrunches. Between these two tics she is doing one or the other at least once every 15-30 seconds...so A LOT. The tics are hard to notice if you're not looking, and can easily be thought of as normal movement or odd 6 year old behavior. Still, I know they're tics, and I know they're frequent...they just don't seem nearly as bad as when she was having the vocal tics b/c they're so quiet. My understanding, however, is that a tic, is a tic, is a tic. It's just pure luck that she's dealing with quiet ones right now, which give the overall appearance that she's much better off than 6 months ago. If the tics are caused by an assult on her brain I really need to be concerned with the amout of tics she's having rather than the annoyance factor...right? I think I'm just getting nervous b/c in our recent visit with Dr. B we started to discuss IVIG, which scares the death out of me. I'm terrified of doing something so invasive that may not even work for tics that aren't super noticable. On the other hand, I don't feel right doing nothing as there is no guarantee that the vocals won't come back at any second if the underlying cause is still there. Am I on the right track or way off base with this?

Thanks everyone for your replies. I am currently working with a Health Advocate to see if they can help with this issue with my insurance. I really like and trust Dr. B and would love to stay with him. I already sent my HMO office visit notes from my daughter's pediatrician and the Allergist/Immunologist saying that her case is not something they can handle, but my they replied saying that "services can be found in network". I'm not surprised at this response. There are hundreds of doctors in network...but unfortunately as you all know, not many who know about PANDAS. I think the insurance companies view is that ANY immunologist can help, and we should be able to find at least one. (If only it were that simple.) I'm going to see what the Health Advocate can do. It would be nice if she could win this battle for me In the mean time I will follow up with the names you all suggested. Thanks!

I'm looking to hear from anyone who has had success with PANDAS doctors in the New England area. I'm from NH and have Harvard Pilgrim HMO, and really need to find someone (preferably an Immunologist) that supports IVIG for PANDAS. My daughter is immune deficient, so we could likely make a case for IVIG without using the word PANDAS. Dd has low titers (likely b/c she is immune deficient...low IgG), but sudden onset of PANDAS following strep & H1N1, as well as a two separate major exacerbations from strep exposure. CamK II of 150 and elevated anti-lysoganglioside on the Cunningham test. Dr. T & Dr. B agree she has PANDAS...so we're past the diagnosis part. She had a fantastic reaction to a steroid burst in April, and is currently backsliding while on high-dose Azith. We've seen Dr. Torres at Boston Children's Hospital, but as some others have posted he does not treat with abx or IVIG. Therapy and ignoring was his main advice for dd's tics. We've also seen a pediatric neurologist with the Dartmouth Hitchcock Medical Center (DHMC) in Manchester, NH...and struck out there too. The Allergy Immunology doctors with DHMC Manchester told us point blank that dd's "case" was beyond their expertise. (I appreciate their honesty.) This has left us feeling a bit helpless. Dr. T is awesome. He got us started on the PANDAS path, but when dd showed immune deficiencies, he suggested we see an immunologist. This led us to Dr. B, who is also fantastic. We've seen him twice, and have begun to discuss IVIG. I would love to stick with him, but my insurance has declined any coverage for services by Dr. B as he is "out of network" for my HMO. I tried getting into see Dr. Elizabeth TePas, but was told that it's a 4-6 month wait as she only works part time. I debated Dr. Fuhlbrigge in Boston, but had heard that he's not very aggressive with treatment and that without high titers he may not be any help to us. Other names I've heard mentioned are Dr. Catherine Lockwood in ME, Dr. Louise Kiessling in RI, Dr. Raif Geha in MA, and Dr. Francisco Bonilla in MA. If anyone has seen them, can you please share your experience? I will go to anyone, but am tired of wasting time and energy with doctors that know less about PANDAS than me. Suggestions??

We did a 5 day burst in April, and saw improvement on day 8...and it was dramatic improvement! To date, her tics have not returned how bad they were pre-burst, although they have started to increase a bit over the past few weeks. Not sure if the increase is simply the burst finally wearing off, or something else.

I've read a lot of posts saying that Magnesium Taurate is more effective for tics than Kids Calm. My dd (6) has been taking Kids Calm since Feb, and honestly I didn't think it was doing any good. I stopped it about a week ago, and since then I've noticed a definite increase in irritability and tics. So, I am putting her back on it. My question is whether it would be better to have her on Magnesium Taurate? If so, does anyone have any advice on what brand & dosage? She is 6, weighs 49 lbs and does not swallow pills.

Yes, I will definitely post what I find out from Dr. B. I would also be interested to know if others on this forum are getting high or normal results.

Dr. B ordered a bunch of blood work for dd (6), one of which was a C3D Complement test. We got the results back from the lab late yesterday and her C3D was 57, with the normal range listed as 0-8. I googled this test and see a lot mentioned about autoimmune disorders and inflammation...but I'll be honest that the articles are WAY above my head. Just curious if any of you are familiar with this test and are able to explaing the significance of having a high level? (I know that I'll get my answers next week when I call Dr. B...but the suspense is killing me.)

Can anyone tell me how long it takes to start to see a decline in ASO titers? My non-PANDAS son's ASO was 369 & Anti-DNase B was 346 on 5/5/10. He had a 5 day course of Zithromax and a 10 day course of Cephalexin in May. We just got the results of a follow up blood draw and his ASO is 302 & Anti-DNase B is 353. The pediatrician doesn't really know what to make of these titer numbers. My son started complaining of a sore throat last night and today has red spots on his throat. I'm taking him in for a culture tonight. I'm wondering if I should push for abx even if his rapid is negative? Do titers take a long time to fall, or is treatment needed until they're low? (I should mention that we saw Dr. B earlier this month for my PANDAS daughter, and he stressed the importance of clearing all family memebers of strep, which is why I'm so focused on my son's titers. I'm going to call Dr. B on Monday, but would like to start abx ASAP with my son if needed.)

Does your son have a diagnosed allergy to the cat? Do you use antihistimines? How was he at his friend's house - before he came home? I am curious because I have a very allergic son. We've not done IVIG yet, and I know IVIG is supposed to "reset" allergies a bit... but I am curious as to how much change there is after. I hope I'm not mis-quoting here. We just saw Dr. B yesterday. My PANDAS child has severe seasonal allergies, which do seem to exacerbate her tics. I specifically asked if IVIG could reduce her allergies, and he said that since allergies are IgE related, that IVIG would have no effect on them.

So happy the day finally arrived. I hope IVIG is the answer for your son!!

Which Igenex test did you do? I went on their website but was confused at which test would be best. My daughter had a Western Blot by Quest Diagnostics and came up IgG & IgM positive for band 41 and IgG positive for band 66.

No, dh and I realized about 20 minutes into the visit that we had "lost" this neurologist. So frustrating. This was our 2nd visit with this one. The first was so promising since the neuro said she'd treated PANDAS kids, and said that she definitely didn't think dd, who was presenting with constant tics, had Tourette's. This visit, however, was terrible. Even with dd's history of 2 major exacerbations in the past 2 months, both when exposed to strep, and both showed improvement within days of starting abx, she wasn't "believing". We showed her dd's Cunningham score of 150, and found that she had never heard of the Cunningham test. She also wanted to know why dd had done a steroid burst, as she's never heard of doing that. She ended the appointment telling us that while she believes dd's onset was triggered by infection, that once this happens to some kids, they simply go on to "develop" Tourette's. Since dd is doing quite well now (on day 24 of azith, and day 17 post start of steroid burst) that we should "take a break from all medicine & doctor's appts and let dd be a kid for a while." -- Apparently, she doesn't know that "being a kid" is much easier when you're not having 10,000 tics a day!!

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep. It is possible that the 'mounting a response' is actually a good thing, it means his immune system overcame the exposure and he himself 'didn't' get the infection..... maybe that is all the titers really are.....the soldiers mounting a response......just speculating. I have questioned the experts too, and Dr. L. said that if someone else is sick, it shouldn't be a problem unless the child actually gets it and his immune system is compromised. I know some believe that if someone else is sick, it is possible for their child to react, but if they don't get the actual infection, I'm not sure I understand that. I think you just have to keep close look, and if you really beleive your child is reacting to others, then go by your instincts, but I am not positive this is the issue for everyone. The fact that the titers don't really tell the whole story is a little confusing. no one here really knows.. I've been thinking about this whole "mounting a response" to strep theory non-stop since yesterday. I find it interesting that the neurologist told me with absolute certainty that my ds (non-PANDAS) high titers don't necessarily mean he had strep. The said he may have had it, but he also may have just been exposed to strep and his body "mounted a response" to the bacteria by creating antibodies which then fought it off before he could actually get strep. OK...I get this. What I don't get is that the same neurologist, during the same appointment, found it hard to believe that dd's major PANDAS exacerbation, that occurred when there were 11 confirmed cases of strep throat in her classroom, could not have been a result of "exposure". Wouldn't the same theory apply?? Couldn't her body come in contact with strep, and her body "mounted a response" by creating antibodies, which fought off the strep (so she didn't get it), but then went on to continue to attack her brain. It seems to me that this neurologist explained the "canary in a coal mine" theory regarding ds's high titers, but she doesn't want the same to apply when it comes to a PANDAS exacerbation. Am I missing something?

My daughter has had has had peri-anal strep numerous times. On her it is bright red & very itchy. It is not moist, as I often see it described. A simple swab to her rectum showed heavy Group A Strep growth with the 72 hour culture. She was mis-diagnosed with yeast numerous times, and showed no improvement with anti-fungal cream. Once strep was confirmed and she started abx, the redness & itch went away very quick.

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep.

We did switch the Rx to Zithromax. He started it tonight. it is only a 5 day course.

I posted earlier today that we just got ds4 titer levels. His ASO is 369, with the normal range for his age being 0-70. His AntiDNase is 346, with the normal range for his age being 0-256. This is my non-PANDAS child (who we are questioning may have PANDAS). I suspected strep on 4/12/10, but his rapid & 72 hour came back negative. At this point, I'm curious what these titer levels mean. Does he have strep, or are these from a past infection? To determine this do we have to retest to see if they're going up or down? We started him on a 5 day course of Zithromax tonight. Thoughts?