HT's Mom

As many of you predicted, our conference with Dr. K has basically led us to commit to our first IVIG, hopefully next month. My DH is on the bandwagon 100% after hearing Dr. K call it a potential "cure", and I admit I am hopeful, but I would appreciate some input from members here. I'm a little afraid to ask and get discouraged, and recognize that those who are "cured" may not be on the forum as much, so those of you reading this may mostly be still struggling with symptoms, so perhaps answers will be biased in that direction. But, still, what are your stories? A search of the forum on IVIG is just too broad, as you can imagine. Dr. K seems convinced that none of these kids get back to 100% with antibiotics alone. He says he has had an 85% success rate with IVIG, in terms of total disappearance of symptoms. He also says that he prescribes one year of abx afterward - I'm not clear on the science of how long kids are susceptible to reinfection causing PANDAS symptoms again - forever, or is it just a precaution? My son is 16 - has anyone here had success at this age and older? If IVIG is as effective as Dr. K claims, why are more parents not going that route (aside from the huge cost issue.)? Sometimes I wonder if DS is maybe doing ok, and whether we need to go this far. But when I told him about it and we talked about scheduling, he wanted the earliest possible date, even though it interferes with some significant things like soccer games, tryouts, etc that he would ordinarily never agree to miss. This tells me how much he wants help, so I hope we are on the right track. Any input and/or links to threads about the procedure is welcome!! Thank you.

Hi everyone, Here is where we are at this time - would love some input. I started on here in January with my twin DS 15 exhibiting tic and OCD behaviors, four years after originally diagnosed PANDAS blowup and four years of only minor eye blinking type tic, nothing major. So far we have had 21 days of Augmentin (symptoms got worse), and now 21 of 30 day course of Penicillin, which we are trying because it worked the first time (four years ago, high strep ASO titers). DS seems slightly better to me and Dad, but when he is willing to talk about it, DS says no. Still having obsessive thoughts at school, on the soccer field, with friends. Tics are mostly facial/eye/head turning, and pretty regular. I and DS have noticed some days are better than others. Stress seems to affect it, but I wonder about diet and environmental things that TS forum discusses as exacerbating tics. Any thoughts on that anyone? Overall though, little or no improvement so far and I want to help him so badly. The whole thing is really interfering with his life and grades. Tests: strep cultures, ASO and Dnase are not showing anything positive, Lyme antibodies tests were negative, but the Mycoplasma test results for both boys were as follows: "PANDAS" DS IgG 2.14 , range is , .90 is negative, >1.1 is positive, IgM 571, range is <770 is negative. Twin Brother IgG 2.662, IgM 148. So, apparently this means they both have had a mycoplasma infection but not currently, correct? Does the 571 vs 148 indicate anything - in other words, even though it's in the negative range, it's so much higher than brother's. My plan is to ask the Doctor to go to zithromax after the penicillin, since it hits mycoplasma. Does this make sense? We have sent blood off to Dr. Cunningham. Their lab is slammed so we won't get anything back for at least six weeks. I'm not sure what we expect to get from the testing. Will this give us clear data that points to PANDAS? Lastly, I'm scheduled for a conference with Dr. K on April 1. "Funny doctor story" - I remember the thread of all the crazy things parents had heard from doctors in their search for answers. Well, I just got copies of DS's medical records from the former pediatrician. The letter the neurologist sent to him at that time, during DS's horrible PANDAs episode at age 11 was in the file. Neurologist says"Some consideration has been given to the possibility that this may be related to PANDAS. I understand a strep titer was performed which was positive. However strep titers are positive in a high % of children..... (later in letter), Parents exhibit mild features of obsessive compulsive behavior." Goes on to recommend therapy and Clonidine. WHAT? WE are OCD because we were in his office freaking out about our kid?????? Lots of children have high strep titers so don't treat this one??????? Anyway, that pissed me off. Then I just had to laugh. But lord knows, I'd like to write him now and tell him that the kid got back to 95% with ABX, which we started a week after the date of that letter.

Norcalmom and others: I'm interested in the yogurt you buy. I got freaked out at the grocery store realizing that the s. in s. thermopile stood for streptococcus. I read up on it and it seems to be an important probiotic for digestion, etc. but is it dangerous for PANDAs kids? Or completely unrelated? My ds was eating 2 activia's a day until I stopped it with this latest episode of tic flare ups. Thank you.

I was feeling so hopeful about helping DS with what I think was a Pandas episode - new OCD thoughts and tics after almost four years of just minor eye tics following treatment of huge, debilitating PANDAS episode four years ago. We convinced pediatrician to prescribe 30 days Augmentin, 875 mg 2x/day, for our 15 yr old son. You may remember my posting about his being a twin and his brother not seeming to be a Panda's kid (although it's possible - testing him next week). Anyway, ds's symptoms just seem much worse after 25 days abx. His eye squinting and head turning are almost constant. He gets very upset if I try to discuss it with him to see how he is feeing (thoughts, etc.), and blames me for bringing it up and reminding him of the whole thing and therefore making him tic worse. Maybe the stress makes it worse but it can't explain everything, right? I'm due to talk to the doctor, but not sure what to say or ask for. Do we switch to Zithromax? He was treated with penicillin originally four years ago, and that seemed to do the trick back then. I'm not clear on why penicillin is not the abx of choice from what I've read here. I'm worried that maybe it's just TS. He's always ticked, as has his brother, although bro has virtually nothing compared to this poor boy. But something must be causing the recent flareup - I thought I had pinned it to PANDAS based on a lot of what you all responded to me previously - wisdom teeth out in December, exposure to strep at the holidays. But the cultures were negative, and the ASO's were 153 and 165 respectively, two weeks apart. Does that minor rise indicate anything? The TS forums indicate a lot of diet sensitivity can be the cause, but I don't think we've changed anything food wise that would explain a flare up. Some TS posters say adding fish oil made symptoms worse - and I did do that recently. Has anyone here had that experience? Should I try food eliminations? Difficult to do for active high schoolers but I would try if it would help. Lastly, if anyone has the patience to explain to me what testing I'm supposed to ask for for the other potential streps that are not strep A, thank you. DH, both ds's and me going in next week. Total confusion and worry here - so any advice or comments are much appreciated!

I thought of Pandas watching Justin on American Idol the other night as well, and I have often worried about whether all the parents and kids posting on the Tourettes and OCD forums here know to test or treat for it. I remember when I first thought my DS had TS/OCD, four years ago, and i knew nothing about PANDAS, I spent SOOOO much time on all the TS forums, freaking out, looking for guidance from other parents. When I did hear about PANDAS and asked about it, it was outright dismissed by one of the TS forum hosts. I don't remember which site that was. Two months later we finally tested for strep titers and got our answer. Treated ds and saw immediate and almost total improvement. So, do you think they all know? Do you ever feel tempted to go on those forums and shout PANDAS?

Hi HT's Mom, we personally have looked into PANDAS but our son does not fit the criteria and we do have a family history of Tic Disorder. My husband and his uncle both had undiagnosed Tourettes or Chronic Tic Disorder. My son did have strep many years back but his tics were present prior to the strep and my girls have not yet had strep at all. For us it seems to be a hereditary thing, what pulled the trigger I can't say...our son is doing well on dietary changes and a good multi and Natural Calm, may be time to look for food issues with the girls next. Our first clue that something wasn't right was his reactions to antibiotics and any and all over the counter meds. eg. Baby Motrin etc. and his reactions when immunized, he had some form of reaction every time, his baby sister seems to be similar and she is the one who seems to be developing some form of transient tic. For now we have to just wait and see. Megan Hi Megan, Thanks. It is very interesting how closely all these disorders are either connected or look alike. I wish you great luck - I know how frustrating and painful it can be. Interestingly, we had some minor tics in my dad's side of the family - many family members- so I thought that TS was the answer at first. Then one aunt with Tourettes told us she had rheumatic fever as a kid, which started my on the whole strep path. Do you feel that other TS/OCD parents on your forum generally know to check for Strep or try ABX? So many doctors don't know to run the basic tests. I know it is not the answer for all or even most, but I would hate to think there are kids that could be helped with this that haven't had PANDAS ruled out. Good luck, HT's Mom

I'm just curious - I have a child with PANDAS, who originally started with Tics, diagnosed as Tourettes, of course, then OCD. Turned out to be an undiagnosed strep infection and PANDAS - treated with antibiotics and virtually all tics and 100% of OCD behaviors went away. I just happened to look at this forum and started wondering if you parents with children starting Tics check strep and rule that out?

OMG!!!!!!!!!! How do these doctors live with themselves letting their egos get in the way of helping/educating themselves/treating suffering patients and their parents with respect?? It's truly inexcusable.

We've been up all night - Both of my twin boys had some sort of stomach virus attack last night, but PANDAS DS (still calling him that, even though my other son may in fact be a pandas kid too, per many members' suggestions) ended up in the ER at 4 am after vomiting about ten times, plus diarrhea. We were concerned about dehydration, and also about the fact that he had started the Augmentin and Prednisone 24 hours before. The hospital put him on an IV and antinausea. I would have been concerned that it was reaction to the abx but non- Pandas twin was also nauseous and sick, although he threw up only once and then slept all night. Any thoughts on DS's greater reaction as related to the drugs? The virus is apparently going around the school. Immune system already weakened from prednisone maybe? The ER doctors said it was okay to continue the abx, but DH wants to stop the prednisone after three doses. He has been prescribed a five day burst, not tapering. What do you think? Lastly, ER nurse mentioned watching his fever for Meningitis, possibly because she thought of that when DS was describing his OCD thoughts. She didn't know anything about PANDAS. Does this ring any bells for anyone? Thank you, HT's MOm

Do you know about this? Could be helpful for newbies especially: Dr. Swedo at the NIH is doing a showl on PANDAS this coming Wednesday. Here is the link to the site: It is at 9 pm Eastern on Wednesday 2/9/2011. You can set a reminder for yourself if you go there. http://www.blogtalkradio.com/the-coffee-klatch/2011/02/10/dr-susan-swedo--nimh

I just want to say you are all my heroes for having a sense of humor after all of this!

This might be my favorite!

Thank you! So many coincidences (see Colleen's reply to me, above), AND it turnout I have neighbor with a PANDAS son. She recommended Dr. Latimer to me as well. I also got an email back from Dr.K, offering to do a phone consult. I sent an email to Dr. Cunningham as well. They are both snowed in, I think, at the moment. UPDATE to all: Pediatrician prescribed 30 days of Augmentin, 875 mg, 2x per day. Also Prednisone 5 days. Doing probiotic also, mid day, after school. (BTW, many probiotics and yogurts have strep bacteria listed! WTF??) So, we are doing something, now wait and see, Meanwhile, trying to convince Doctor, including my Infectious Disease MD friend, that other infections are possible and trying to schedule testing for whole family. Thank you to everyone!

[Thank you for the advice, momlove, peglem and others. I have actually, coincidentally read Saving Sammy, about six months ago, thinking, naively, wow, I'm so glad that we are past that terrible time. Also, I happen to have a friend who is a pediatric infectious disease md, so I have emailed her and will schedule all of the tests that have been mentioned, for both boys. I am waiting on a call from pediatrician to get augmentin prescribed, and will ask for other tests for all of us. One more little tidbit I just thought of after coming across a couple posts about children having new episodes following root canals or other dental work - Both boys had their wisdom teeth out just before Christmas. The non-pandas kid was put on an antibiotic because his teeth had hardened due to prophylactic tetracycline abx for acne, ,but not my DS with pandas issues. Does this seem like another clue to our current situation?

[Thank you for responding, elizabeth. However, I have no familiarity with any of what you have referenced. I think Mycoplasma is walking pneumonia? And why Lyme disease? And what is the C3D circulating immune complex? Lastly, we have only ever had the ASO test - until reading this forum the Anti-Dnase was not something I was familiar with nor has any doctor mentioned it. Thanks.

Hi Everyone, I am new here, although not new to PANDAS. We have identical twin sons, now 15, almost 16. Tall, healthy, athletic happy kids....except for what appears to be a new episode of PANDAS, 4 years after the major ###### you are all familiar with struck one child at age 11. Brief history: both kids always had minor tics as small children, although one, DS in question, a little worse. Lots of ear and sinus infections. Brief weird period around age 5/6 of what I now think was a PANDAS episode - repeated verbal and movement tics/OCD. Went away when I quit work to be with them, so I thought it was some sort of separation anxiety problem (yes, working mom guilt trip), but was probably resolved with antibiotics for other stuff. Both boys diagnosed with ADD around second grade. Fast forward to age 11, major episode of tics/verbal repetition/OCD rituals that increased in severity over four or five months, during which we were told it was TS/OCD. Kept looking for right answer because identical twin was showing nothing. Finally found PANDAS and got positive strep/rising titers tests for otherwise asymptomatic DS. Treated with penicillin for 21 days, and virtually all symptoms disappeared except for minor eye blinking and rolling that has continued since then. We have just assumed that he would always have these. I am now having major guilt and worry that I have not kept up on the understanding and information about PANDAS since then, as now I wonder if maybe we didn't really kill the infection or something - could his minor symptoms still be PANDAS? He was not put on a prophylactic course or any other antibiotic. Pediatrician knew nothing- just did what we asked. Over the years we have had his titers checked and cultures taken anytime we think he has been exposed to strep, but no positives. Titers generally around 150, which doctor always says in normal range. Reading Buster's info on ASO titer UPLs, I'm not really sure about this. Fast forward again - two weeks ago. Now DS starts with more severe eye rolling, head turning. Begins to tell us that he can't control certain thoughts - has to repeat thoughts in his head before kicking soccer ball, answering a question in class, etc. Alarm bells going off in my head of course. The problem is that a month ago we started him on a stimulant medication to help with the ADD and high school demands. He has been off ever since the first PANDAS episode. We took him in for a titer test - again 156. Symptoms worsening over the last two weeks, but not as severe as the first episode four years ago.. Stopped the stimulant last week. DS is worried - what if this is just me, Mom, and not PANDAS? Breaks my heart. So, took him back again yesterday. Rapid test negative, waiting on long and ASO levels. DS was possibly exposed to strep over Christmas as my sister had it over the holidays and was around us quite a bit, although she tried to "stay away" from DS. Meanwhile I started researching again, and found this forum and the pandasnetwork.org. Wow - so much more info now than a few years ago. But here are my questions for anyone who might have thoughts: 1) I understand that is it is possible if not likely that the stimulant exacerbated underlying tics. But does it sound like more to it, ie PANDAS problems given the severity of OCD issues and the exposure to strep a month ago? 2) Is it OK to start a Prednisone pack immediately/before antibiotic to help relieve symptoms? 2) If the strep culture adn/or titer tests are negative (not rising), should we insist on a course of antibiotics anyway? i.e. what's the harm? 3) We have no real baseline for "normal" titer levels other than the above. It doesn't seem that 156 is high, but how do you know what is high for your kid? Would an identical twin's brother's levels prove anything ? That child has never had a PANDAS episode. We do plan to have him tested for strep and ourselves, just to be sure it's not in the house. Any thoughts or suggestions would be appreciated. Bless you all who have much worse cases with your children - it is wonderful to see so much support and information out there. Thank you, HT's Mom.