browneyesmom

Good question, Kara. Strep is our battle, so I was really more interested in looking at that; however, I do want to know if docs are tending toward abx for this overall condition (PITAND/PANS). Thanks for the input, everyone! We have a doc appt this week and I want to be well prepared. I'm also pulling research on this topic.

Question: 1. Is your child taking long term daily abx for PANDAS and if so, 2. which abx and what dose and 3. what is your child's age, weight and 4. number of severe PANDAS exacerbations - AND, 5. current status of remission at this point? Thanks!

Reading my mind... soooo tempting at times! The wicked side of me thinks it might be fun to arrive in his office, new paper in hand, choosing the tests I want him to run and asking him for his 'interpretation' of why my child's titers never rise in the midst of a flaming strep infection... maybe his brief Immunoglobulin G test will answer that question for him... sigh. I'll pass on the psych meds though; they seem to exacerbate the situation. We happened to be in our Peds office yesterday & briefly discussed the article. Her closing comment on the topic as she reached for a rapid & culture for my daughter was, "Well, they can refute it all they want; reasonable people will still disagree." Thankfully, medicine has moved more into meta-analysis of literature and this is not even a study, but more of an opinion/position paper. Let's hope the rest of the medical world is more adept at locating the rest of the research and making their own interpretations.

Where to begin? I am all for the expanded workup; however, leaving out strep tests (and neglecting to mention that not all kids are able to mount an immune response that shows as elevated titers), as well as Quantitative Immunoglobulins (with subclasses, preferred) seems ... well, irresponsible medicine to me. As for the name they are proposing - CANS - Childhood Acute Neuropsychiatric Symptoms... (symptoms?!) is something I find downright patronizing and offensive. In the medical community, a "sign" is something that is considered objective data and can be observed by others, whereas a "symptom" is subjective and only the patient can attest to it. While some of what they wrote could potentially be construed as an olive branch to NIMH and as much as I would LOVE to see agreement on this issue (namely, Kurlan and Singer getting on board with basing their literature on scientific fact rather than pride, career goals and what they want to "believe"), I don't know that I can jump on board supporting this document.

I just looked for some videos on ballism, ballismus, ballism chorea, etc... there were only one or two that looked a little like what she had last winter. Hers was much more extreme, intense and lasted for 20-30 minutes following rages that were up to three hours long. Then, she'd just go limp. Scary, just to remember it. Even though these were observed in two emergency rooms and an inpatient Children's hospital room more than once, no one ever mentioned this term to me, nor have I seen it in her notes. During that hospitalization, a Pediatric Neuro was her attending... not a PANDAS specialist, but I'm just really surprised as severe as hers was, that I only recently heard the term in my own searching. Thanks for the responses & input. I am so thankful for how much progress she has made since that time. I honestly did not know if we'd be able to get her back from that point. She does not remember these episodes; I hope she never does.

Very interesting that others are seeing this also, nut endoscopy shows nothing. Thx for the input! She has had non-specific *lower* GI complaints with exacerbations for ages... I usually assume it is yeast and increase Mgmt of that. I'll have to think on this more after some sleep.

Did any docs ever call it ballism for your kids who have had this? I think either I wasn't clear or some of you missed it... she has not had these in months. They subsided as the rages did with IVIG and time last winter. I'm just reflecting back on what that was in case I ever see it again.

Yes, mine did. We have tested multiple times - always negative. Either way, I would encourage you to be hopeful. If it is positive, you will treat and things will improve. Hang in there.

Her GI is thinking about a variety of things. One is Eosinophilic Esophagitis, one is H. Pylori and the other is that she has GERD. She has nausea pretty much constantly, acidic breath (this one has improved since we switched her from Prevacid to Protonix) difficulty swallowing, feels like something is stuck in her throat. Why did your son have one done? What were the results if you don't mind me asking?

Oh phooey... is it? I'll go have a look and remove some. Thanks! You can also email me here: PANDAS-Awareness@cox.net

Honestly, Laura... if I could get ex on board, I would try anything under the sun to help her heal! But, you probably know that already by now. No worries, you didn't offend. I'm just so frustrated that he wants to stop an antibiotic that could very well prevent another extreme exacerbation and I can't for the life of me get my head around his rationale for doing so. I guess he missed the caveat that in some cases, the benefit outweighs the risk. Sigh.... Truly, this is the exact reason that we need more medical research. The funny thing was that giving them meds would be more "lab rat"; whereas doing a simple endoscopy would provide answers. He wants to look like he is her protector and seems to think he has to protect her from her mother and the doctors. Don't even get me started on why the opposite is actually true. Yeah... it took all I had to "respectfully" disagree yesterday morning.

Thanks for your input, WD... that is what I was wondering.... what did the docs call that? In my dd's case, the link of communication was broken during that time. She was unable to communicate with us and did not seem aware of us talking to her. She does not, fortunately, remember. It was indeed terrifying. She has been improving, but as you know, it is a slow process. Unfortunately, she just tested positive for strep throat again yesterday after being strep free for 3 months after a 15 month fight. We live in an area where docs are having trouble eradicating it. Let's hope this time we can stop it faster. I haven't been keeping up here but remember you from her first severe exacerbation three winters ago. I hope your son is doing well now.

Thanks Laura & Mati's Mom. She has been tested several times for Lyme & related infections (and we just sent one more recently) umpteen times... always negative across the board. In the area we live, apparently, they are finding it more resistant to antibiotics, which is why the heavier ones are being used for her. Honestly, given the severity of what she endured in her first two severe exacerbations, with last winter being the absolute worst (intense episodes lasting up to four hours and I had to call 911 for help five times in two weeks), I'm feeling uneasy about this new positive strep test when her brain is not completely healed from the last exacerbation. Further... my ex showed up at the Pediatrician appt yesterday. I live with her, am her mother and an RN and have been observing the following symptoms in her, so made appt to get to the bottom of why she is suddenly having suicidal thoughts again that we have not seen in months... perhaps there is an infection on board? Child has headache, sore throat, nausea, red throat, looks "pasty" (docs words, not mine - but I agree) and has been having increase in symptoms: increased OCD, separation anxiety, and suicidal thoughts... rapid strep test is faint positive, but positive. Doc says it's like a faint positive pregnancy test - can't be a little bit pregnant, you either are or are not. Likewise, you either have strep or do not. Doc says she has strep throat. Ex says... let's run a culture and if that is negative, we can stop the antibiotics. ??!!! I don't suppose I need to tell you that did not go over well. I pulled him out in the hallway to discuss and suggested we let the doctor decide what she has and what she needs since neither of us has a medical license. He ultimately wound up apologizing to doctor, insisting he only wants to take care of "his daughter". I guess he read something on antibiotic resistance at some point and has now decided that she has taken too many abx in her young life and had too many tests (he also made an issue at the GI's office with that doc this week that he "does not want her to be a lab rat" and that we not do what doc said would be a 5 min endoscopy (10 min total sleep time), but try a round of Zantac, then wean her off... doc did not say wean her off - he said keep her on it if it helps; otherwise, we need to re-discuss endoscopy - I let that one go as it's only two more weeks to try the new med). While I have physical custody (he has visitation), we share legal custody, so this is a rough journey in that regard in trying to advocate for what she needs. There is more, but this isn't the place to discuss. Diplomatic Pediatrician tries to discuss, then gives up and says, 'ok, we can run a strep culture'... I start asking if the rapid is positive and culture winds up negative, surely, we are not going to pull her off abx?!! His clear impression is that she has strep... said it explains the increase in symptoms, she presents clinically with it and in his mind, she has strep. But also comments that let's wait and see what the culture shows. I assume he's buying time to get my ex out of the room. Thanks for letting me vent.

When my daughter was in the midst of her most severe PANDAS exacerbation last winter, she would have episodes of rage lasting up to about 3 hours, followed by severe thrashing of extremities for up to about 30 minutes, followed by limp... just nothing... laid there motionless (one time, with tears running down her face) for up to 30 minutes. Thank the Lord, she no longer has these horrifically intense episodes following months of IVIG and we did finally eradicate the strep after fighting it for 15 months (except she just tested positive again yesterday after being strep free for 3 months), so I'm gearing up for battle to help her again. although we've still not seen anything at this level of intensity this time. What I'm wondering about is that thrashing piece. I do realize that she has a severe case of PANDAS, having all the symptoms I've ever seen reported, so perhaps this is more rare, but has anyone else observed a similar thrashing in their PANDAS child? If so, have any of your docs commented on this?

Many of you old-timers will remember my daughter's case from last winter, especially. We fought strep for 15 months and could not eradicate it... we tried it all, even IV antibiotics via a PICC - nothing was working. She continued to decline, having rages lasting 3 hours, followed by severe Sydenham's chorea - bilaterally lasting up to 30 min, followed by unconscious for another period of time.... usually 20-30 minutes. I had to call 911 for help five times in two weeks last December. She was eventually hospitalized, many tests run and received her first of several high dose IVIG infusions in the Children's hospital at Christmas. We saw a dramatic change... the entire episodes dropped to about 20-30 minutes total. They still followed that same pattern, but less intense and a lot shorter. She was on homebound the rest of the school year. We did FINALLY eradicate the strep in early summer with 2 weeks Clindamycin followed by 2 weeks Rifampin for 2 weeks, carefully monitoring liver function the entire time. This fall, we are trying to send her back to school on a modified schedule with a late start... we all know what the obvious worry is here. She's been having an increase in symptoms, including severe separation anxiety, emotional lability and suicidal ideations... this nightmare never seems to end for any length of time. Brought her to the Ped this am... She tested positive for strep this morning. She's back on the Clindamycin for 2 weeks... oh, how I hope this will get it the first time!! Do kids with this sort of pattern ever really get past this? Do they ever really stop getting strep so often or at least not reacting to it with such a severe response? I wish we knew more about the prognosis for our children... we need so much more research!

Hi Jodine, good to see you over here. That positive strep test explains so much of what they've been experiencing lately. Unfortunately, IVIG will not prevent our kids from getting another infection, including strep. I wish there were easier answers to this thing... this is why we need research for PANDAS so much! My own dd12 had strep for 15 months (last winter was the absolute worst of it - psychotic for hours with rages, biballism (bilateral severe Sydenham's chorea), and unresponsive periods... it was scary. We did start the high dose IVIG infusions for her (she had to have several) while she still had strep. Eventually, we did eradicate the strep in early summer (it took Clindamycin for 2 weeks, followed by Rifampin for 2 more weeks... carefully monitoring liver function the entire time) and she was strep free for 3 months.... yeah, "was" ... tested positive again this morning. It's a tough battle, my very best wishes to all of you... I know she has a lot on her in this situation... keep working with the PANDAS doc; sometimes, it just takes time. What does he say about this? Will he need another IVIG or will getting the strep get it? What abx did they put him on? I forgot to look at that... he was on Augmentin 1000 mg already, right?

Thank you for the input, Kim. You outlined some great points and I appreciate that! Obviously, the goal is to keep her in school... safely. It is exhausting when this manifests. We met with her counselor today and will see Ped in the morning. I will likely have to call the school to schedule a meeting with the 504 chair... again.

I haven't posted here in a while. My dd12 is recovering from her most recent and definitely most severe PANDAS exacerbation last winter. She has made great improvement; however, she still has a long way to go. She is back in school this fall (modified schedule, late start and we're working on 504 accommodations) after being on homebound most of last year. Here's my concern. She has suicidal ideations now and then. With her being back in school, we have to manage this (and she changes classes all day) so she remains safe and hopefully, in class as much as possible. I've worked with her counselor and we are developing a folder for her to keep at school that she can refer to to try to re-direct herself. It includes: Positive affirmations Encouraging statments Truths (positive) Pics Scents (hand sanitizer and lip gloss) Faculty are all aware of this and will allow her to leave classroom when needed for this and/or urgent bathroom runs. Guidance counselor is going to place a permanent pass in her planner so she won't have trouble being stopped in the hall if a teacher doesn't have time to sign before she runs out of the room. Her teachers are all very supportive, view her as a responsible student and I know they are looking out for her. However, I'm still concerned that we need to close some loops. My remaining concern involves the few short minutes between classes and if she does not report to class, how that would be handled as well as if she does leave the classroom and does not return fairly quickly. How would someone know if she did not go to the guidance office for help, for example? Also, whatever we decide, how would this information be communicated to a substitute? Has anyone dealt with this issue and if so, how did you successfully manage it? Thank you!!

Great news! I'm very interested in this (and if someone has a sample letter) as my daughter is in middle school now and changing classes constantly. This is after her second and by far, most severe exacerbation. So far, I am communicating with the nurse and asking if she is seeing strep. It seems extremely complex to have parents notify teachers ... I guess we'd have to do it for the entire 7th grade.

Messaged you... check your inbox... hope that helps.

Wendy, I'm so sorry to read this post from you and I am dealing with some things here so don't have time to read all the responses (sorry), but I wanted to respond... I have felt your frustration as this drags on for your family. I wish there were more I could do or that something would break for you guys on this! In the meantime, you know where to find me if you need to vent. Sending lots of hugs!! ♥

We started on the ones for kids, but then she refused taking those no matter what I did, so I had to switch her to the capsules. My dd is 12 and has been on heavy dosages of abx this past year as we were unable to clear the strep for so long. We have her on both Culterelle & Florastor twice daily. I'm pretty sure the Culterelle indicates it can be given at the same time as abx... check the package. We did try to give them 2 hours later when we could though as we didn't want the abx to kill the beneficial yeasts & bacteria.

lol - LOVE it! Wishing you all the best with the IVIG... keep us posted as you can!

Our Ped likes Culterelle, Dr. L likes Florastor - we use both, twice daily when she is on antibiotics. We're a little less rigid about the frequency when she is off abx. Honestly though, what finally cleared up the thrush in her mouth (and I strongly suspect she had it in her gut too) was making Kefir at home with grains. All I have to do is pour milk over the grains, let it sit on the counter for about a day, then strain it, pop it in the fridge and start over. Some have indicated that probiotics in dairy products seem to set off their kids - possibly due to the fact that they contain strep thermophilus, which in some children, may cause an immune response. It will not cause them to 'catch strep' that we worry about - the GABHS, which is actually strep pyogenes. We don't seem to have an issue with it, so it's important to know your own child's situation.