thereishope

Not sure what to take from this. I am fully aware you are just relaying what you were told and it's not the actual white paper. re:long term antibiotics....I wonder if he means low dose, full strength, etc. I wonder when steroids would be introduced. Hopefully, before being debilitated. I know he claims it's just another diagnostic tool, but there are parents on here (including me) who know it is part of treatment and helped their child overall. As for a watch and wait plan, yes, one can do that, but even if you play that game, catching super fast doesn't mean it shortens/weakens an exacerbation.This part sickens my stomach since this is what we did with my son and some of exacerbations were really bad even though they were catch within a day. Perhaps there needs to be a rule put into place where the child remains on abs for a year to try to ward off another exacerbation and give the body and brain time to heal. But, for goodness sake, after a very bad exacerbation or multiple exacerbations, I think at least a low dose proph antibiotic is justified. What I find interesting is from following so many parents who have seen Dr K, I know if my son had saw him, I would have been told he needed IVIG. My son ended up recovering without. Does that mean kids will be referred to IVIG even though they not need it? I wonder what timeline they will follow. Oh my....it is still a long road ahead of us for everyone, including doctors, to figure out what is the right plan to put into place for local docs to follow. We all know not every child is the same. I pray for divine intervention that the right protocal comes of this. Something else I've worried about is, as Dr K menitoned, many of his patients are long term sufferers. Has this panel talked to enough parents who have lived the opposite? Who have caught it early and gotten better before....and followed their long term outcome? They could learn from them.

So many of us have hit road blocks with doctors preaching to us about what they think they know about PANDAS, antibiotics, and treatment whne they have no real idea what it is. Luckily, your appt with Dr B is coming up soon. As for SSRI's, one has to be careful when giving them to a PANDAS (or even possible PANDAS) child. From Buster's Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 This caution with SSRI's is even stated by the IOCDF http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf If you want to continue to search out a local doctor, don't let this one run you down. What kind of doctor was this one? Even a pediatrician can prescribe long term antibiotics. Many have found that when they compare PANDAS to RF (Rheumatic Fever) of the brain, doctors may "get" it better. Prophylactic antibiotics are commonly used when someone is dx with RF.

JAG, my husband kept saying..."Don't post it until the end of December. What if something else comes out." Then my computer almost crashed the other day and I thought I lost the video. So, I told him I'll post it and if more comes out, we'll make a "special edition" one to replace this one:)

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Motrin is one of those things that if it helps, it indicates possible inflammation. If it does not help, it does NOT rule out PANDAS. With my son, it did not help when he was in a full exacerbation, but it did help when he had setbacks with viruses and allergies. Tried motrin and it did not help. Would that mean it is not PANDAS?

Yes, I did. When I found out my computer could make slide shows and movies, I ran with it.

This is a video recapping PANDAS Awareness in 2010… PANDAS 2010: The Year of Hope

I'm bumping this up since in various threads, probiotic suggestions were requested:) If anyone has more, feel free to add!

The red ones are the similarities to my son. As for the wet vagina, have you ever had her swabbed down there for vaginal strep when that happens?

Aw! That's precious. Maybe Santa will bring her an ornament with the word "Hope" ?

Hopefully, the change will help. I know the right antibiotics varies with each child. As for the school, even if there are no cases on file, it doesn't mean there aren't any. So often parents don't give the reason for absence. I have it file to get a call when strep is called in for my 2 boys' classes. I have yet to get a call. Yet, I would be surprised if no one at all in either classroom hasn't had strep yet this year. Does Ibuprofen help at all when he gets bad?

I am so happy to hear things are still going well! Wouldn't it be lovely when we don't have to walk into a doctor's office ready for a fight or defend ourselves? Personally, I would give a probiotic. Not only will it help with yeast overgrowth but it also helps with the immune system.

I'm old school and do detailed journals, but many find Buster's charting system extremely helpful... Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

I'd suggest messaging pixiesmommy. She suspect her dd had it since shortly after birth. And, yes, a sinus infection can be the culprit.

Yes, you did!

look at the bottom of of the original post. Hit "edit", then edit the post and click save changes.

Not sure if you realized that your child's first and last name attached. You may want to edit....

Unfortunately, yours isn't the only one It could be he had asymptomatic strep and that vaccine set his immune system over the top. Not saying that is the case, but it is a possibility.

You can play a role in increasing the chance of no return. Make sure no one in the house has strep, if anyone has strep, do a follow up 3 weeks after finishing all antibiotics. When you go to popular kid places like McDonald's playland or Chuck E Cheese, bring some hand wipes to use after leaving the establishment and wash hands before eating if the kids' play before getting their food or don't let your kids play there (McDonald's playland rarely gets cleaned). Even though over time you may feel you are in the clear, keep watchful. Respect his body by keeping up with vitamins, perhaps Omega 3's, and if continue with vaccinations (not starting a debate about this) only do so when the child is completely healthy and space them out. If you choose not to vaccinate, that is up to you too. I'll give my opinion on this, if asked. If you haven't done so already, adjust his diet to eliminate things like dyes, chemicals, etc.I also suggest keeping up on here now and then so you stay in the swing of things. It's harder to play catch up if things should go wrong again. Let's hope and pray he never gets sick again!

When it comes to the school and things like IEP and 504 Plan, I would take any accomodation you can regardless of what dx it falls under. Does your child also fall under the guidelines for OCD? If so, you could ask that OCD be tagged on as another dx. Collectively, with the ADHD and OCD dx, you cold get a lot that a PANDAS chils would get. I think you can get more with adding the OCD dx onto it. That dx would get you things like multiple absences,tardies, unrestricted bathroom visits, etc. With the school, you can go onto to tell them your child has PANDAS and that can even be included uner medical history without having it written down by the doctor. My son has an IEP for speech, but I do have PANDAS listed under med history. I didn't have to provide anything to back that up since he isn't getting accomodations for it. But, for me, I wanted it listed since I ask that I get notified for strep in the classroom and if he should ever have another exacerbation. I don't want the school to say, 'Why didn't you tell us he had that?".

Thanks for posting!

UHC has many different plans so be sure to look up your individual one. My UHC deductible for an individual in network is $3000. I'm glad UHC is supportive of PANDAS since I don't care for them for anything else:)

Welcome to the latitudes family! Have you considered trying Zithromax or Omnicef? You also want to rule out strep in all family members even if they do not have symptoms.Could anything else be interfering like allergies or any other possible co-infection? Not sure if you have stumbled on these links, but they are very useful... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

From what I gather, tics are the hardest symptoms to get rid of. Luckily, my son did not have tics. Also, I believe it has been mentioned on here before that PEX may be better for stubborn tics? Someone correct me on this if I'm remembering wrong. As for the IVIG's, were they with a doctor that follows the PANDAS protcoal of high dose IVIG? Have you ruled out a family member being a possible trigger through exposure? Some have found that they have a hidden carrier or someone has a hidden active infection through bloodwork of family members. Something to think about doing, if not done yet.

Glad to hear that what did creep up wasn't that bad and short lived. I say that's a definite sign of healing!