mom24

Holy Cow. Dr B recommended VSL 3 powder packets and I had to dig a little, but I discovered that they DO have strep in them. I do remember Dr T telling us to stay away from yogurt and other things with strep in them. Thanks SOOOO much for posting. Nickelmama-thanks for the alternative, I intend to order to ASAP.

Great news! He had a bath again in the epsom salt and no diarrhea tonight! He liked it to...found it very relaxing!

Has anyone heard of/used this as a detox for Lyme? I gave my DS a bath and he developed diarrhea this evening. I am not sure if it is just a coincidence (his brother just had a short bout of it). I'm also always on the lookout for C-Diff. He is on so many antibiotics that this is always never far from my thoughts even though he takes massive pro-biotics. Fingers crossed that he is better tomorrow!

Thank you! Still waiting to hear from LLMD. The LLMD NEVER has discussed detox with us.

Not sure. I don't think there are any co-inifections other than the usual suspects for us--Myco plasma and strep. He is on: Clindamycin, augmentin,minocycline, lamicil and a pro-biotic. Very high ASO for him 800. I think his symptoms are more Limey though.. Dr was reluctant to add another antibiotic understandably .

Not sure of the answer, but I will tell you that one of my DS has Lyme and Bartonella and was getting all kids of funky rashes before and during treatment (about 7 months). He is still being treated, but he does not get rashes anymore! Everything has improved all around! Take a look on Dr Jone's web site, it may have the answer :-)

Hi all- So frustrated with meds here. DS has tried so many different things since he also has PANDAS--frequent strep and myco plasma infections. A new band recently showed up on th WB and he has been taking minocycline for about 10 months. One MD suggested tindamax, another suggested plaquinil. Anyone have experience with either of these? I am inclined to go with the plaquinil since I don't like what a trusted MD told me about tindamax. Any help will be much appreciated!

This is kind of random, but I agree with people who have mentioned that having a "celebrity" involved might help. Has anyone read Jenny McCarthys' book? I wonder if she knows anything about PANDAS. I am also very frustrated with the insurance companies. I am not in the DC area----NYC suburbs.

Until recentlly I thought that IGG (meant gone) and that we only had to worry about IGM, but Dr B clarified this for me the other day. My DS 1 and DS2 both have VERY high IGG's and one had a creeping up to close to + number again( we have a chronic problem here). We are currently using antibiotics like augmentin 875 (for the big one) and minocycline... recently added clindamycin for strep (clinda and bactrum for the little guy)--- but it seems to really depend because some of them are 1st line vs second line chioces for MP and or strep. It is very confusing and seems to be highly individual. We are also treating Lyme too and the Dr just recommended a "cyst buster" --tindamax for my older son. Please post if you get any more info about xrays and myco plasma. We see an LLMD too if you want to PM me. It may help a lot since lyme and MP seem to frequently exist in tandem. Checking out the tindamax with the LLMD.

we have over 5.0 IGG MP here which is VERY high in our labs reference range. Still playing antibiotic roulette. Our Dr's office mentioned a physician who specialized in drug resistant MP anyone know who that is? I have always wondered about the long term effects of having a high IGG for MP. No doctor has ever suggested x-rays to us for MP, my kids are asymptomatic. ASH_- are your kids asymptomatic?

I hope it doesn't get to this. Fingers crossed that something will work. I hope that the treatment helped your child.

Thanks. We have four under our belt and have seen tremendous improvement from a cognitive, attention, fine/gross motor and impulsivity. I know a MD who has a child w PANDAS and he said that he believes that there is not a cure but we just need to limit the distance between the peaks and valleys. I know that he is better that he was @ baseline 1 year ago. DH co switched insurance so we went from going every 6 weeks to 0. They have hired a medical reconnaissance person for us to try to find a way to get approval. If that doesn't work the next step is to appeal to the State of CA. DS has tested Igenix + again for the second time on 2 bands of the WB. He also gets strep and MP frequently. Dr J and Dr B will adjust meds when they talk next week. It is tough since his sibling has MP all of the time and they pass it back and forth. We need to work on approval for him at some point too. I was trying to explain this to a pediatrician in our group recently when I insisted on a swab. I have RA and when I get sick, my joints hurt. With my kids, it doesn't effect their joints when they get sick, it effects them behaviorally and cognitively. Still seems hard for this ped to get it. Anyway, thanks for the feedback!

I have to blow off a little bit of steam here. I posted this topic a while ago and over 200+ people have read it and yet not a single response. There have been no thoughts or support- zero.( I have noticed that people have responded to other people that have posted similar topics regarding approval and IVIG). We had to suddenly switch insurance carriers and were well into IVIG treatments and were abruptly cut off by our new carrier. It has felt like our world has been falling apart seeing our child deteriorate without his treatment. We also had to cancel all of our child's scheduled appointments---which were difficult to obtain in the first place . I know we are not the only people with Aetna on here.......Again would have appreciated pointers from people who have been in our shoes.

Please pm me. Thanks so much