minimaxwell

Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs <br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">My daughter has PANS ,fatigue is a big part of it(along w/ocd,anxiety and panic.) She got 70% better with lVlG and currently takes augmentin 500BID.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">Negative western blot with Quest. So we did basic Igenex.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">lGG **41 kDa + lGM ** 31 IND **41 IND 45 kDa +,<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">so the only one that really worried me was band 31. Did an additional band 31 epitope that is 95% accurate. It was NEGATIVE.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">So my question is..can I relax now and say she does not have Lyme? Also,never really herxed from abx (aug and doxy) or lVlG.<br style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; text-align: left; ">THANKS!

Saw your post while I was emailing with Dr T. He sent me back this reply. "I don't know who this is... But I will see her this week, maybe even tomorrow. Tell her to send email" His email is trifmd@gmail.com Good luck!

Can anyone please share their notes, thoughts, observations,learnings..? Thanks!

You may want to contact Dr T and see if he can get pre approval for you. He is now set up to do it in NJ

Gammunex, especally if low lgA

OK, just saw you have United. You will have a much easier time getting lVlG at MGH. call me when you can,I can help you.

sending you a pm

Dr Jenike does not see kids. dr Geller at Mass General will treat for PANDAS but you will wait to get in. Call and tell them you need to be seen ASAP, feel free to use my name (Tiffani Maxwell) I would also make an appt w/ dr Mark Pasternack ,also at MGH. What insurance do you have? For fastest treatment use Dr T. He is now sharing many patients with the PANDAS docs at MGH. I would try and get Dr t covered in network with GAP coverage. You will still pay out of pcket but you will probably save $$. Feel free to call me 508-667-0574. You are in Metrowest right??

Dr Keamy at Mass Eye and Ear is very PANDAS friendly.

I do not think Aigmentin will clear it. Dr t thinks MycoP is my dd's trigger. I remember he added Doxy to the Augmentin. Yesterday we were at the ped b/c DD has fever and cough,I am testing her for MycoP (along w/many other things per dr T) Ped wanted to add Azith but her tummy can't handle it. He gave her 100mg Doxy BlD

Sorry lack of sleep for this PANDAS Mom. : Hello, Not sure if you have seen this post: FYI from the IOCDF..."Research into the cause and effects of PANDAS and PANS is still in the infancy stages. Many parents have ideas about what is working for their children. As IOCDF works towards fundraising for research into PANDAS and PANS, we are interested in hearing thoughts from parents about what questions they feel are unanswered. These ideas may be used in future research funding, or may simply be suggested to researchers independently. This brainstorming session is organized and moderated by Dr. Michael Jenike, and will be attended by another IOCDF member as well. It is for parents only. Parents who are unable to attend, may also submit thoughts or concerns to Susanb4312@gmail.com in advance of the conference, and they will be included. This session is not intended to answer parent questions about specific cases, but rather to begin the process of gathering observations from those who are closest to the illness. This session will be held Saturday at 9:45 - 11 am in the Old Town Room, on the 2nd floor of the Marriott. For information about the IOCDF Conference in Chicago, please check http://www.ocfoundation.org/conference/" Cathy Witkos, Lisa Hart and I thought we could have our own brainstorming session. I will then present it to Dr Jenike and Susan Daily from the IOCDF. Lisa has generously agreed to host at Woodland - http://www.woodlandgolfclub.com/Club/Scripts/Home/home.aspTuesday 7/31 at 6:30PM. Please let me know if you can make it. Hope to see you for some drinks,appetizers and what is sure to be meaningful conversation. The room Lisa has reserved for us holds 14 people so please let me know ASAP. Yours in Health, Tiffani

Some probiotics have Streptococcus Thermophilus (S. Thermophilus). Avoid these.

Hello, Not sure if you have seen this post: FYI from the IOCDF..."Research into the cause and effects of PANDAS and PANS is still in the infancy stages. Many parents have ideas about what is working for their children. As IOCDF works towards fundraising for research into PANDAS and PANS, we are interested in hearing thoughts from parents about what questions they feel are unanswered. These ideas may be used in future research funding, or may simply be suggested to researchers independently. This brainstorming session is organized and moderated by Dr. Michael Jenike, and will be attended by another IOCDF member as well. It is for parents only. Parents who are unable to attend, may also submit thoughts or concerns to Susanb4312@gmail.com in advance of the conference, and they will be included. This session is not intended to answer parent questions about specific cases, but rather to begin the process of gathering observations from those who are closest to the illness. This session will be held Saturday at 9:45 - 11 am in the Old Town Room, on the 2nd floor of the Marriott. For information about the IOCDF Conference in Chicago, please check http://www.ocfoundat...org/conference/" Cathy Witkos, Lisa Hart and I thought we could have our own brainstorming session. I will then present it to Dr Jenike and Susan Daily from the IOCDF. Lisa has generously agreed to host at Woodland - http://www.woodlandg...home.aspTuesday 7/31 at 6:30PM. Please let me know if you can make it. Hope to see you for some drinks,appetizers and what is sure to be meaningful conversation. The room Lisa has reserved for us holds 14 people so please let me know ASAP. Yours in Health, Tiffani

Don't have an answer regarding the test, sorry. But I was wondering if you could get Dr. M covered in network for you using GAP coverage.

Forgot an important part--I said she was 6 weeks post lVlG and doing great, 70% better, BUT if she got sick again...

Forgot an important part--I said she was 6 weeks post lVlG and doing great, 70% better, BUT if she got sick again...

YES! I was so surprised when she said this. I stayed after and spoke with her . I said my daughter is 6 weeks post lVlG but if she gets sick again are you saying I should be doing PEX? she smiled and said "yes, but she will get better with lVlG too'

perhaps email Beth Maloney

Luckily for us we got it covered b/c we have United and they cover lVlG for PANDAS. I have 2 close friends that have BCBS MA , both paid out of pocket with dr k but got reimbursed. It seems like many get it covered as post infectious encephalitis.

I had heard from another Mom who had Cigna that they cover PEX for PANDAS but not lVlG. if that is true I would try getting PEX seeing as it is Dr. Swedo's first choice for treatment of PANDAS/PANS. I heard her present this at the PAS Conference in Boston this past April. Dr. Latimer does PEX.

My vote is for Dr. T. When I began on this journey I spoke with Dianna Pohlman, founder of PANDAS Network. I was on the fence as well. She convinced me to see Dr. T and it was the BEST decision I have ever made. He leaves no stone unturned and does not stop thinking of these kids. He sends me emails at all hours of the night forwarding me information. Dr. Jenike and Dr. Geller highly respect him and he consults on some of their patients. He is the most caring doctor I have ever met. Feel free to tell him I sent you. I will be spending the next 2 days with him, let me know if you want me to give him a heads up about your situation.-Tiffani

http://pandasnetwork.org/wp-content/uploads/2012/07/3048_001.pdf Sorry, can't figure how to copy and paste. perhaps someone more computer literate will help.

It took us about 10 days to get Igenex results back. We had them drawn right before her 2nd lVlG and 3.5 months after the first. Now we had to add another test $100 for more accurate results on band 31. We also met with Dr. greenblatt for Methalation issues since we also tested positive for MTHFR. Dr. G is expensive and testing he does is also $$$. We are having genetics team at MGH run the tests (organic acids) instead. Perhaps not as sensitive as Great Plains Lab that Dr. G likes but can't justify spendind an extra $600 now. Waiting is indeed the hardest part. We are starting B12 injections..will not know which is helping but at this point I just want her back to baseline. Anything that can help..bring it! Who is your PANDAS Dr?

My DD has peeling skin on her hands, kind of bubbles then peels. Not painful or itchy. Didn't give it much thought until the other day. Dt T sent me an article this week about Coxsakie, some of his patients are turning up with it. My DD has had 2 episodes of Pancreatitis and this article made a link to coxsakie so he wanted her tested. Results will be in Monday.

When my DD stopped going to school to be in her "resource room" the school started sending home a tutor. we had a dr note so it made it easier. it became less stressful for everyone. when they are in a flare do what ever makes life easy. Perhaps you can post what part of the country you are in, someone may have a dr suggestion.