thereishope

I know your question was about switching antibiotics, but you could try keeping what you're giving but changing your routine. I also give my son a chewable refridgerated probiotic, but it's not nearly as potent as what some on here list. I don't know how potent yours is, but if it weaker and that's the only one he's willing to take, how about trying two chewables for a while? Also, I've seen it said on here that probiotics are better before bed. Is it at all possible to give antibiotics in the am and probiotics at night? It could take a couple days to make that switch but it is something to try. In regards to the Azith, some have said their kids did not do well on it. Hopefully they will chime in.

Being that he's on two antibiotics, what kind of probiotics are you giving?

Yeah...I know...it's the mom in me:)

Sending prayers your way, Peg! You've overcome this before and you will be able to do it again. Be strong.

I think it's just because the child will have a higher likelyhood of being allergic or developing an allergy. It sounds like the kids will be put on a prophylactic antibiotic post IVIG (says child must be able to tolerate proph antibiotics). That antibiotic may be penicillin or from the penicillin family.

I've had that before and that bad too. Those white spots should start to go away by day 3 of an antibiotic. If they don't start to fade by then, call the doctor back and tell her. Also, don't forget to change your toothbrush after a couple days of abs.

I think I know what it looks like. Try to gargle with some salt water too. It'll help the white go away faster.

Ugh! All those times and you more than likely had it. For God sake those other doctors are able to make a clinical dx of strep even if a test is negative. So, when was the last time you were on antibiotics? Hopefully this script will erradicate it and help out other symptoms. Get yourself back for a follow up 3 weeks after finsihing the antibiotic if the doctor won't give you a refill. So, what does the back of your mouth/throat look like? Small red spots, white spots? I'm actually curious since my kids are asymptomatic.

I recently posted this http://www.latitudes.org/forums/index.php?showtopic=11905&st=0&p=99635&fromsearch=1entry99635 And here's another one http://www.latitudes.org/forums/index.php?showtopic=6925&st=0&p=55334&hl=wireless&fromsearch=1entry55334 I don't think you're crazy. There can definitely be a connection.

I agree, look online...and buy a few to have on hand. Over time, hopefully you'll see this pass. If you do notice one day she isn't wearing the white shirt underneath, I may not draw attention to it. In time, when you notice some other symptoms fading, you can always have the white shirt ready to go, but not in her dresser or wherever else she leaves it and see if she requests it or what she says if you say you think it may not be ready. I often "tested" my son like this with his clothing issues. But I did make sure I also had at least one of his "go" shirts clean and ready just in case.

This was the listed Bench to Bedside award. Cunningham is listed.... Institute(s)/Institution Antibody Identification and IVIG Treatment of PANDAS NIMH: S. Swedo Yale University: J. Leckman Oklahoma University Health Sciences Center: M. Cunningham

The IVIG study is listed! http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_11-M-0058.html@pandas

Am I reading this right.....So if someone had a documented strep infection, they didn't get antibiotics if their primary didn't request results? And those that did get antibiotics, what antibiotic were they given?

I'd like to know where their getting these kids from for these studies? Parents would need to know if their children are involved in a study and if the joint names of certain docs are part of it, I'm a little surprised diagnosed PANDAS parents would allow their children to participate.

Do you still feel it was the combo of meds (including ketoconazole...one listed on the web md link) that did this for your child? When your child had steroids the first time (without psychosis) was it a 5 day or month long? In that first link, it seems that child was on a lot of different steroids? And I think it was prophylactic (longer term) steroids?

Welcome! Like others, THANK YOU for caring so much about your student! I don't have time to read other reponses so sorry for any duplication. Can you allow the parent to scribe for your student for the time being, allow assignments to be typed on the computer and printed, or record a narration on a device? Is this student able to verbally tell you what he would like to convey? Does this student have a 504 or IEP? If not, would you feel comfortable approaching the parents on the possibility of this? Some parents may know this is an option.

The small world of PANDAS, doctors, and understanding is expanding and getting bigger...finally. Thank you for sharing!

Oh, I totally agree! For us, if a meltdown occurs, we run for a strep test. A tell tale meltdown is our indicator.

I wanted to extend an official welcome to our PANDAS PITAND family! Yes, it's hard to chime in and post about what your child is going through sometimes, but in the long run it will help.

Jill, I'm not sure if you read my post right (maybe I didn't write it right). My son is doing very well in speech As for homework, the Early Childhood SLP was awesome with communication and homework. And, yes, we faithfully did it. His speech was very bad (severe phonological disorder). I could not sit there and not do his homework. The homework only took about 5 minutes a night and we continued with the homework sheets throughout the summer break. The SLP in elementary is dfferent. I have requested homework and progress reports from her. Even with that request, she only occassionally gives homework or a report on what they worked on. I am not as strict with hounding her for homework or write ups because my son is doing well with speech and, like you said,I realize the SLP is busy too. My son continues to progress with his speech and continues to make his goals in a very timely manner. If another child who is struggling has the same SLP my son has, I could there being issues though. I have also heard from other parents on speech forums about their SLP at school and some seem like a nightmare. Luckily our school district, for the most part, is okay with services. Not the best, not the worst. Yes, I agree that it a collaborative effort between therapist and parent. To add, my son's progress did hault when he was in exacerbation.

In your specific case, because your PANDAS son is reacting to something, I think it's worth taking the non-PANDAS child in to rule out strep. Me and my kids... I have 3 kids, bad insurance (over $100 to go in for a strep test). So, it depends on what the other symptoms are for me to take them for a strep test. Side note: my kids have been asymptomatic when they have strep. If the kids has just a sore throat, I'll monitor it. My kids get sore throats for nasal drainage due to allergies, sleeping with their mouth open, etc. If they have a fever, white spots, or a few days of it, yes I take them. If I see any other red flags of even remotely having strep, I take them. If the school calls and says strep is the room, I take them. If one has strep, we ALL get tested. So, no, I don't take for every sore throat. fyi...they do sell rapid tests online you can buy and have on hand as well.

Everyone wants to do what's best for their kids and you never know if something will work unless you try. You're a great Mom and your kids are lucky to have you! Maybe down the road,as they get older and things stay calmer longer (and it will get calmer...believe that), you can always revisit a natural approach. Timing plays a big role in all of this. What worked, or didn't work, one time can be a very different response later on.

It was put on there last year. I believe it was an undertaking of many on here. It's a great way for parents who are navigating the IOCDF site to learn about the possibility of PANDAS. It's also good to have a respected org header on a print out. If possible, the Fact Sheet on latitudes is still more complete:)

This popped up on my fb today. I know it's been discussed here before, but not in quite awhile so I thought I'd reopen the discussion for those that weren't on here the first time around.I have not watched the videos. Overall, things like wireless routers, cordless phones, cell phones, etc do run a chance in causing issues like rages and worsening tics. It doesn't hurt to do a "test" and unplug things that may be transmitting electromagnetic waves and radiation and see if it helps your child. The Health Effects of Electromagnetic Fields http://electromagnetichealth.org/electromagnetic-health-blog/cc-video/

I'm sorry your kids have the flu! It really is across the board how PANDAS kids react to the flu. Some have no reaction, to minor, to bad. My PANDAS son had H1N1 before. I did see some PANDAS come a few days post fever but it was rather short lived. I'd suggest if they can take it, to give Ibuprofen right now and even a couple days post fever.