bigmighty

Gosh. I am so sorry. No idea. At that weight, the 250 mg dose of keflex seems good. I'd think about doubling it, but not without checking with the doc. DS was on keflex 250 about 2 yrs ago at 77 pounds, and they doubled it when he got strep, then just decided to keep him at the 500 mg level. DS's problems went away when they switched him to Augmentin. Have y'all already gone that route? Again, so sorry he is dealing w/strep again, but very glad you caught it so quickly. Hugs.

http://www.npr.org/blogs/health/2013/08/07/209794356/what-makes-good-bacteria-go-bad-its-not-them-its-you?ft=1&f=1001

The empirical product is supposed to get nearly all of the product absorbed with very little waste. That's what appealed to us. DS is 15 and weighs 115. He just started three weeks ago and takes 4 drops per day at present. I tried 5 drops a couple of times without telling him and he became savant-like, but oddly inconsistent. Wanted to tell me every weekly spelling word from 4th grade in order from memory, but could not add 8+ 3 without a calculator (he will take calculus honors in the fall). Needless to say, we are back to 4 drops. But it is very obvious that a small amount is all that is needed.

http://www.empirical-labs.com/product_p/liposomalmethyl.htm Does anybody else take the liposomal methyl b12 w/methylfolate from empirical labs? It's a liquid so very easy to figure out a good dose. Do a few drops a day for a week, then try to add an additional drop the following week and see what happens.

DS went to Dr. B. to get advice as to treatment protocol. After seeing Dr. B in person, we did a few follow up phone calls. Once DS got to a good place, we switched to a local internist familiar with PANDAS. She agreed to prescribe ongoing antibiotics based on Dr. B's advice/thoughts. DS's internist runs quarterly labs and prescribes antibiotics. She has indicated that she would be willing to prescribe steroids if they should be needed again. DS still goes to the regular pediatrician for an annual physical and shares copies of labs as an FYI. The internist is out of network, so it's cheaper to do the physicals with the ped. But the ped does not prescribe.

If there is a trader joe's near you, they have an odorless omega 3 supplement that is also completely flavorless.

Thank you so much. I appreciate the info.

We are going out of town later this summer and the A/C not be on the usual setting while we are away. I don't want the remaining Augmentin 500 pills to be left in the heat. But I can't seem to find out if it's okay to refrigerate them. Anyone know the answer? Many thanks - Suzanne

Praying for the smoothest possible transition to wellness. Hugs.

Thanks.

We did get some before and after labs from NIH. But we were told that they were run at NIH and that other vials were headed to Cunningham. Yes, we were told if we had been in the placebo group or not when we came back for the 2nd week.

Yes. They did before and after. I emailed Dr. Cunningham and she said they took the child's name off of the NIH labs and sent them in with a numeric coding that does not remain on the child's file. So I will not be able to get them from NIH.

Hi LauraMary. Hope things keep heading back in the right direction. DS is nearly back to normal about 10 days out from the one-day reduced dose.

So, we can repeat the Cunningham labs? Sorry, if I am confused. DS's labs were submitted to Cunningham via NIH. We never saw results. Wondering if we can see original labs and have redone. How would that work? Thanks.

DS has been in remission for over one year. But when we, just recently, attempted to reduce prophylactic antibiotics, the symptoms came racing back rather quickly. We have ramped back up the antibiotics, and he is stabilizing. But, so far DS is 2.5 years on antibiotics and no end in sight.

I'd love to get that info also, if possible. Thanks so much.

Oh my gosh. Don't do anything without another opinion. Hoping someone on this board can steer you toward the best place to inquire. So sorry. Sending virtual hugs.

http://medicalxpress.com/news/2013-05-immune.html I wonder if all of the antibiotics my kid is taking kills the bacteriophage though.....

So - are there things other than, or possibly preferable to, Augmentin that modulate glutamate?

Thanks - can you steer me towards that paper?

Thanks, Nancy. I guess I really thought that the inflammation would have gone by now. So it surprised us how fast things returned. Going back to the 500 until school is out. Then thinking of switching to 500 in the daytime and 250 at bedtime to see what happens. Also thinking of talking to the doc about another steroid taper to see if we can get rid of the inflammation once and for all. We'll see what she says. Hoping not to go backwards at this point.

DS has been in a full remission for over a year. Zero symptoms. No recollection of ever having been sick. He has continued to take prophylactic Augmentin to keep from getting strep - first Aug 875 twice daily, then cut down to Aug 500 twice daily. He has been on Aug 500 for the past five months. Today, he switched to Aug 250 and it was immediately apparent that all symptoms were returning. Quickly increased the dose and hoping to stabilize things ASAP. Guess we didn't realize just how important the anti-inflammatory properties of Augmentin were in DS's "remission." Are there folks out there who just continue with antibiotics indefinitely? We had anticipated him going off entirely this summer, but that seems to be out of the question. Perhaps, this summer, he can try Aug 500 in the daytime and Aug 250 at night? Any BTDT wisdom out there? WWYD? Thanks.

DS has been in a full remission for over a year. Zero symptoms. No recollection of having been sick. He has continued to take prophylactic Augmentin to keep from getting strep - first Aug 875 twice daily, then cut down to Aug 500 twice daily. He has been on Aug 500 for the past five months. Today, he switched to Aug 250 and it was immediately apparent that all symptoms were returning. Quickly increased the dose and hoping to stabilize things ASAP. Guess we didn't realize just how important the anti-inflammatory properties of Augmentin were in DS's remission. Are there folks out there who just continue with antibiotics indefinitely? We had anticipated him going off entirely this summer, but that seems to be out of the question. Perhaps, this summer, he can try Aug 500 in the daytime and Aug 250 at night? Any BTDT wisdom out there? Thanks.

http://venturebeat.com/2013/04/16/yc-startup-bets-crowdsourcing-can-diagnose-diseases-better-than-doctors/

Peds might want to run extensive labs. Many PANS/PANDAS kids also have CVIDs. DS has low overall IgG. Something like that often requires IVIG treatment and, if sufficiently low, insurance will pay.