Kiera

It is my understanding, especially with the liquid forms, that as the days go on it gradually looses a bit of potency each day. This may be why it's becoming less effective. Ask your pharmacist about this. Also, my pandas Dr said the pill form of augmentin is much better if you can get your child to take it, I know it's big but it's crushable and can be put in pudding etc. Also, highly advise consult with pandas expert, in person or by phone and just cut to the chase. Wish I hadda done this 2 1/2yrs ago, but finally on the right track now!

What timing! Beth maloney just sent out an e-mail blast including celebrating the first overseas pandas support group! Contact Suzanne Ayres, facilitator, Oxford, England, suzanne.ayres@yahoo.co.uk.

Sent you a pm. Look for message in top right hand cornor!

According to Dr K bump up antibiotics a few days pre and post. All the other advice here seems helpful too!

I think I've read it's something to do with the part of the basal ganglion inflammed that controls the internal sphincter for urination, therefore signals get eratic. I could be wrong though, maybe someone else will chime in.

Very disturbing! And here I thought we'd made such progress lately!!! When are the mainstream Drs going to be enlightened?? If I were you I'd be making alternate arrangements now!

Worried dad, a question for you! So how do you know if you've found the right antibiotic at the right dose - relief from symptoms? In which case ivig may not be necessary?! We're persuing ivig because the antibiotics are not working. I'm hoping we've eliminated the source of infection after removing infected Ts & As and now the ivig will take care of the circulating antibiodies that resulted from that. For future flare-ups I'd imagine a broad spectrum antibiotic is best (which augmentin is) to cover for a many infections as possible and treat immediately upon exposure, am I right??

Ask for mycoplasma IGg and IGm, also add on DNase aswell as ASO for the strep titers. Do throat rapid and send in. This is just a start! Print off new PANS white paper (on pandasnetwork.org) give to ped, tell him to look up newly updated NIMH website, ask for long course antibiotic and get app. with the neurologist of your other kid ASAP. Don't waste time with non believers especially when outcomes are better when nipped in the bud! Pandas in siblings is common. Good luck.

FYI- promethazine is also used as a sleep aid so may be contributing to fatigue.

Just from what I've read, you can't see Pandas inflammation on MRI, need more specific Spect scans or maybe pet scan?? But Drs order MRI to rule out other causes of symptoms.

P.S. Also, FYI, my ds's tonsils and adenoids were infected upon culture post T & A even though looked small and normal prior! Another hidden source of infection.

Agree with Nancy. Think you're finally getting on the right track. My ds has gone through the list of diagnosis since childhood when a pronounced increase in severity post a strep throat clued us in to the pandas diagnosis and on the road to recovery. Remember only about 50% of kids even mount a response to strep (elevated titers) or the titers may have already dropped by the time tested, or there could be a completely different trigger - mycoplasma, mono, etc. Well worth forking over $$$s now to see a pandas expert, even if you have to travel, as you'll end up paying anyway with years of trying other stuff, not to mention the human toll on child and family!

Yes, yes, yes! So worth it and get on right treatment path ASAP. Print out the new white paper released by Dr Susan Swedo from NIMH last month on PANS/PANDAS to give to local Drs. (find it at pandasnetwork.org) Research is based on part on Dr K's stats and his name is mentioned in it so his opinion should carry weight with your local drs. Also print out newly updated NIMH website on PANDAS to bring to Drs.

Agree with patric! Cut to the chase and go straight to the expert and save yourself a lot of angst! We did in person consult in march, flying for first ivig next week. He's seen so many pandas kids, he knows what he's doing. Still $500/1hr consult and worth it! Call his secretary Diane on a Mon/Tues/Wed AMs only to set up consult and go from there. Good luck!

Awesome!

Chebe bread mixes are yeast free and yumee!

PANDAS just sucks on sooo many levels!! Road blocks at every step of the way! Finding the right Dr, travelling to the right Dr, paying OOP for services, fighting insurance for coverage and then fighting the school for services to boot, all on top of dealing with a dysfunctional child!! We can just hope and pray that in a few years down the road all our efforts haved paved the way for future kids to get treated properly and promptly! But I agree with Iowadawn, you need to circumvent this horrible principal who is neglectful at best, more like intentionally obstructive!

Yeah, I too was a little perturbed by the "thanks to the mom's unhealthy lifestyle"!!! I get what he means by the whole unhealthy western diet/toxins etc and all, but he could've worded it better!! Or are we to blame our unhealthy bodies on our Moms??

You can have the Dr request it be processed expedited. Do you have an ins. that provides ivig for pandas or do you expect to have to appeal for it?

Most definitely do it! My ds's tonsils looked normal, pulled Ts&As purely for pandas, cultured pos for pseudomonas in t&a and were scarred from chronic infection so you never know! Be sure to up antibiotics 10days pre and post and iv antibiotics during procedure and ask dr to culture everything (they usually don't). We wouldn't have known about pseudomonas otherwise and did 10day course of cipro for that. it didn't improve pandas symptoms but may have been responsible for autoimmune reaction trigger, now awaiting ivig to clear rougue antibiodies. If I had've done ivig first it may not work due to chronic hidden infection!

PM ed you, look in top right hand cornor

PMed you. Look in top right hand cornor.

FYI, you might want to check with whomever is ordering allergy testing about the H2 blockers. I was told to keep ds off all antihistamines for 2wks prior to any allergy testing, not sure if this includes H2 but probably.

When you're begging your ped, or whomever, for antibiotics, do you have a copy of the new white paper from dr Swedo in hand to give them?? Also print off the newly updated NIMH page and bring that also. Did your child have sudden onset? If so, stress this. It could also be PANS, if strep neg. Most Drs are kust uninformed on the issue and especially on all the new stuff out of the NIMH. Go to pandasfoundation.org and click on providers, maybe someone listed is closer and beg for quick app, explain your situation, or maybe they could recommend a Dr to get in sooner to get treatment started.

You'll find Dr K's info at www.webpediatrics.com