AmySLP

Listen to the podcast that dr. t just did. He stated that for those with high titers, doing pex to cleanse the blood followed by IVIG within a few weeks may be the best option for some.

We use Bactrim with good results

Just had a similiar post you may want to look at responses for...search IVIG for kids who respond to abx.

Some pandas kids with extensive strep histories do not have a rise in titers. My daughter had strep for nearly 6 months and had 2 titer tests during that time. Numbers were not reflective of the strep that was positive on rapid and cultures for those months. She also had Epstein Barr which came simultaneously with the strep and started the tics. it can be many other infections. It's clinical presentation of symtoms and your daughter sounds like she may have it. It's too little abx. Ask your pediatriician for a higher dose, and do not go off until she sees dr. L. Definitely the schedule of 5 days off is not recommended during abx. Trial.

Antibiotic trial would be my recommendation to see if it eliminates Or reduces symtoms. You can give ibuprofen as well and see if the anti inflammatory has an effect. It's been so long since we've tried a new abx or dosage that I'd ask the question on the forum for what to ask his pediatrician for. Also recommend an appt. with a PANDAs doc.

I will call his office and ask on Monday about insurance approval and payment. I am curious too. We have paid so much out of pocket and then waited months for reimbursement that I just can't do that with something this costly.

Just ask for Liver enzyme testing. Dr. B ordered it once for us and then I asked for a repeat again on next visit and he thought once a year was sufficient. I had our ped. Order them the last time. Every 6 months seems to give me more piece if mind.

Heading to cape cod tomorrow and hoping the beach air will fix things! Just kidding, but don't I wish it could be simple. Called ped. To get another abx on board, so we can try to improve things before school starts. Thanks for all your opinions and info. They are all so valuable!

I guess to clarify...we have been at this for four years....seemed to have exhausted all others possibilities of infection and treated those suspected with dr. B over a 2 year period. Have been on a combo on abx, high doses of zith, augmentin and clindamycin. Certainly tried lots of things and did much testing. Currently using Bactrim which is what we used as prophylaxis, albeit not typical, it's worked. I'm going to call for a zith prescription to use the 2 in combination for a few weeks. Think I can get a T & A, but do not think my ped would know the first thing about what to order For IVIG. My daughter has always had tics and chorea movements primary, but OCD and irrational fears that seem to pile up with each exacerbation. Please keep your opinions coming. It helps out so much to hear what's worked for others. Can't believe that I'm still here asking for help four years later, but glad there is a place to come.

After 3 years of antibiotics (4 years since onset) for long stretches, with any attempts to come off, my daughters PANDAS symptoms return, usually with the oldest first and then a new issue or two following. We are in full exacerbation again, after I was told to trial her off the abx .for the summer. We had 5 weeks of maintaining symtom free status. I did find a patch of impetigo on her thigh and thinking this was the cause, although I started with a sore throat myself yesterday. My pediatrician, a huge PANDAS believer and will support anything I ask for, feels very strongly that we should pursue IVIG to see if we could clear this. Asking me to go back to Dr. B or another PANDAS doc. And ask for IVIG. I call my daughter's case mild, because I have read of much worse from your stories. He disagrees, feeling that it's well controlled because it has been caught and treated aggressively with abx. We have not seen a pandas doc since last fall, as when on the abx. She's been fine. Am I right to tell him that staying the course on the long term abx. Is the only real option? Or should I be seeking to trial IVIG....he seems to think we could cure this because she has been so responsive to abx...kind of a one and done principle. I think I know better from being on the forum and reading everyone's stories. To clarify...my ped. Is not afraid of long term abx...will prescribe all we need and feels that they are needed for PANDAS. he just feels that we should try this treatment. I have asked his question of dr. B and more recently Dr. Elia at ChOP only to be told that if she responds to abx., IVIG is not warranted. My ped thinks I should try Dr. T. Or should we go back to dr. L who diagnosed her in the beginning? Feeling though like I'm shopping around to get a treatment that may not be warranted. Please tell me honestly what I should do or what you would do. I have to go back to the ped. For a physical with her in a month and i know he will expect that I have an appt with someone. Also the question of the tonsils keeps coming up...take them out or not? No traditional strep throat with her and in the past ENT said they looked normal. However, dr. Elia (saw her in December) thought we should consider it and the ped. Keeps bringing that up. I had my tonsils out at 13, but still have gotten strep and had some higher titers when tested before. As always I am greatful for your advice, Thanks in advance, Amy

Worst part of the summer...waiting for the teacher assignment. Asked to avoid a particular teacher who is a yeller and anxious herself per reports. Apparently does timed test all year to get ready of the third grade standardized exams.....clearly not a match for my PANDAS daughter. One more week to see if I'll be calling administration if my request was not honored.

2 for 2 here, although the younger milder, probably because we were all over it with first impetigo. She didn't have strep for 6 months like my oldest dughter that we couldn't get rid of. Family history ...myself , my sisters and my dad. Reason why we never had a third child.

Hopefully hospital based ENT and SLP work closely...not always, not at every hospital. I would start by asking for a clinical swallowing evaluation by SLP and let she or he guide you to next step. Good luck !

Just wanted to chime in that a speech-language pathologist in a hospital setting would be the person to seek out if swallowing problems are suspected or to determine if a physiological problem exists. A clinical evaluation, sometimes supplemented by a modified barium swallow study/videofluoroscopy, would be done. I cannot stress enough to be sure an SLP is present. Interpretation goes much beyond if someone aspirates or not (which is often what radiology reports simply state). ENT and GI do not typically evaluate pharyngeal swallowing in this way. This is a non-invasive X-ray test, where the person eats small amounts of food and liquid that is mixed with barium. This test is typically done by SLP with radiology and can be ordered by primary care provider. I hope that referral to SLP was done in aforementioned case where pulmonary indicated illness was likely related to aspiration, if it was suspected to be chronic. To clarify, there is a difference in an isolated incident of aspiration pneumonitis from aspiration of emesis and chronic aspiration and this could have been isolated, thus SLP referral not appropriate. I read that note from the conference and remember it mentioning swallowing issues as a result of involuntary movements. To me this means that the involuntary movements or chorea may impede normal swallow physiology. We see this in Parkinson's And Parkinson's like diseases involving the basal ganglia. Very intriguing to me as an SLP who treats swallowing and a PANDAS mom.

Sounds like it could be a conductive hearing loss...get him to an ENT or audiologist .

2 daughters with PANDAS, myself with dx. Of pediatric fibromyalgia from CHoP as a 13 yr old after years of strep and resulting joint pain, had tonsils removed less than one year later...resolved symptoms. No fibromyalgia symptoms now. lots of strep as a kid and teenager until tonsils out, although still getting strep. My dad ....lots of sore throats as a kid, my grnadma describes him as a sick kid (only child) couldn't step on cracks of sidewalk...had to walk entire length again. Has OCD for as long as I have memories. My paternal grandma....OCD which continues to this day at age 86 My sisters....one had some repetitive behaviors (blowing on hand, eye blinking tics) the other with joint pain and inability to walk t age 7 or 8 and continues to have some minimal facial and vocal throat clear tics.....both sisters like me with chronic strep. Most definely its genetic.....dr.B told us at least 40% of siblings have it

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My daughter too had to get labs about every 6 to 8 weeks...my ped. Thought it was overboard. I told him to start writing the abx. Prescriptions and he did and has been continuing to do so for about a year. Haven't seen dr. B since the fall and thus a break from lab draws!

My daughter too had to get labs about every 6 to 8 weeks...my ped. Thought it was overboard. I told him to start writing the abx. Prescriptions and he did and has been continuing to do so for about a year. Haven't seen dr. B since the fall and thus a break from lab draws!

My youngest is allergic to penicillin and gets a rash like you describe. Just tried it again recently after years without using it, with same result.

My daughter with PANDAS danced competitively too this year. Impossible feat yeat prior due to attention problems and involuntary movements in upper extremity. I was so happy that her dance teacher had the faith in us that she was doing well and was not nervous to bring her on board to competitive team, considering that an exacerbation could throw her back into these problems. She is good dancer and I'm so glad she had that opportunity, after years of being plagued by PANDAS symptoms! She has so much confidence on stage! I will tell you that I do see her perfectionist prior self come out in dance, but at least it's directed appropriately. This can, at times, push her OCD where she will practice a dance over and over, restarting it if she makes an error. She can also be a bit obsessive about getting down a dance step or into a split etc. I do not worry about it though, because it seems to be a passion for her! Its great that your daughter has something that comes easy to her to succeed in...it's not easy to live with PANDAS symptoms, and I believe even less so due to confidence issues-dance will give her that! Welcome to the dance mom's club!....something I never saw in my future! Amy

My first thought was utilize this opportunity to ensure he qualifies for an IEP....I'd go for it now!

How do u find the private fB pages for pandas for the kids. My nearly 8 year old wants to know if anyone else has PANDAS...I think this would bE great for her