minimaxwell

I have put out some feelers along these lines as well. Norcalmom , I am the one who sat with you at lunch during the conference. There is a Mom on the Private Pandas FB page that wants to help. How can I put you in touch with her? Is Beth willing to take this on?- tiffani

So frustrating!! We have had 2 covered by UHC, now what? Are they going to deny them going forward after we can prove so much progress has been made?

Running out to work but wanted to Quickly comment. My child only attended 31 full days of school last year. After 2 lVlG's she is 70-80 % better. We will see our immunlogist on thursday to discuss this and report back. She is at MGH and has only done lVlG for 3 pandas kids so far, my dd was one of them. The other specialists may be more knowledgeable on how to take this on. Has anyone called UHC yet to find out how they went from proven to unproven?? Thenmamama, i love your post!

Dr T has spoken to us about coxsacie as well. We are considering trying Acyclovir (zovirax) similair to Valtrex. I have heard a few say they have had good results with this.

We have united and had lvlg at Mass General Boston on 6/26. When did this go into effect??

My DD did the program when she was 16,let me know if I can help in any way.

Dr Jenike told me about me about this App "Live OCD Free" for kids. It has a butterfly icon. I know one child age 11 that has been using it and enjoying it. It is a little costly $79. Let me know if anyone else is using it, I'd love to give him feedback on it (btw it is NOT his app) My DD is too old for it, turning 18 in 2 weeks.

Dr Jenike told me about me about this App "Live OCD Free" for kids. It has a butterfly icon. I know one child age 11 that has been using it and enjoying it. It is a little costly $79. Let me know if anyone else is using it, I'd love to give him feedback on it (btw it is NOT his app) My DDis too old for it, turning 18 in 2 weeks.

Just wondered if you have ruled out PANDAS?

Another Dr taught me this trick to "re set the internal clock" We gave benedryl for 3 nights in a row. Beware -a few kids can get hyper on Benedryl

you might enjoy reading from Dr Goodman http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

Oh yes the dreaded school approaching. this kicks up anxiety every year. FYI there is a private FB page for kids to vent about this, it is seen by all the parents but parents stay silent. Here is an example of a recent exchange: A Hi everyone! I am going back to school this year for the first time since I've been diagnosed with PANDAS. I am really nervous. Is school hard for you guys? How do you explain everything to your friends? Do you guys miss a lot of school? I love this group, you are all so supportive! Thanks! Like · · Follow Post · 9 hours ago Seen by 8 [/url] hi alissa, i think everyone starts to feel nervous this time of year. school can be hard, but i like to look at it as a challenge when my friends ask, i tell them about pandas, sometimes ill email them some reading material to help them understand. if you dont feel comfortable explaining it, you could always make a joke, i used to tell people aliens were taking over me but they will return to their home planet soon. (nobody asked questions after that one) who knows maybe if you spread the word about pandas you could help someone who is undiagnosed! last year, i was only in school for 30 full days, this year im going to try my best to not let my ocd and anxiety get the best of me. best of luck · Like · thanks drew! I was just diagnosed about 2 months ago but have been really sick and undiagnosed since last August so I only did 4 full days of school last year. I have been having awful mood swings and have a hard time explaining to my friends why. I might actually use that alien joke if thats ok pandas is a challenge and I really hope everyone can spread the word so its not so unknown. Thanks for the advice. How long have you had pandas? · Like Hi Alissa, I am very nervous for school this year. I haven't gone to school since April 2011. I have 3 friends that know I have PANDAS and they get it. I just explain the truth! This year I am starting a Montisorri school and they understand PANDAS Have a great day! via · Like [*] <br class="Apple-interchange-newline">

I would go for the lVlG. Both Swedo and dr K have told me they think abx is just a band aid. Yes, I do recognize that abx alone have help some (Sammy Malone) but if you could get the lVlg covered I would do it in a heartbeat. It has helped my DD tremendously. BTW, Dr T is now set up to do this in his new office.

lol, LLM you are never a wet blanket. It is always important to share both sides of the coin. I did ask about the C Diff, he was not concerned as long as we kept up high dose of probiotics. Also asked him about rotating, he said find one that works and stick with it. Not sure how I feel about that.I have been rotating a little. So, are you suggesting taking the Pepsid away from abx or just things like Tums away from abx? Also, we are starting Clindamycin today(she was on Aug and just finished 10 days of doxy) Wondering if I need to give Zinc away from this abx? I have asked a few pharmasists and keep getting different answers.

She is taking 40 mg in AM AND 40mg PM.

Dr Trifiletti does HD in his new office in Ramsey,NJ.

Swedo has told me her first choice to treat PANDAS is PEX. I would go for that.

Ditto on the MycoP testing.

My DD had both lVlG's at the age of 17. Onset was around age 6. They helped her very much. however any time she gets sick/exposed symptoms come back a little. Not sure I buy into the whole puberty thing. Dr Jenike recently told me of several adult patients with sudden onset of OCD. One in particular started abx and symptoms went away completely.

No, we did not discuss H1. My dd used to get spontaneous hives all the time,especially if she was anxious or having a panic attack. She rarely gets them now after lVlG. We used to give her claritin daily but I never noticed it really did anything for her.

Just wanted to post about a recent appt. with Dr Tim Buie (GI) from MGH Boston. He sees PANDAS kids and is VERY active in the world of Autism. He put my DD on a high dose of PEPSID not for any gi issues but for PANDAS. He wants her taking 40 mg BlD(twice a day), she is 100 lbs. He gave me an RX but turns out is what cheaper to buy it off the shelf at the drug store.

Just wanted to chime in about a recent appt. with Dr Tim Buie (GI) from MGH Boston. He sees PANDAS kids and is VERY active in the world of Autism. He put my DD on a high dose of PEPSID not for any gi issues but for PANDAS. He wants her taking 40 mg BlD(twice a day), she is 100 lbs. He gave me an RX but turns out is what cheaper to buy it off the shelf at the drug store.

Dr T told me the other day that he is using acyclovir (sp) on some kids and having success. So glad he is helping you.

Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs <br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">My daughter has PANS,fatigue is a big part of it (along w/ OCD,anxiety and panic). She got 70% better with lVlGn and currently takes Augmentin 500 BlD<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">Negative Western Blot with Quest so we did basic Igenix 4 months post lvlG<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">lGG<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**23-25<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**31<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**34<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**39<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**41 kDa +<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**83-93<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">lGM<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**23-25<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**31 kDa IND<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**34 <br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**39<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**41 kDa IND<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">**83-93<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">So the only one that really worried me was band 31.<br style="color: rgb(28, 40, 55); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">We did an additional band 31 epitope that is 95% accurate. It was NEGATIVE. So my Question is-- can I relax now and say she doesn't have Lyme. Also never herxed from abx (aug. & doxy) or lVlG. Never got worse with prednisone. Thanks!

Not sure why when I copied and Pasted it showed up all garbled.I'll try agin, here goes: Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs My daughter has PANS,fatigue is a big part of it (along w/ OCD,anxiety and panic). She got 70% better with lVlGn and currently takes Augmentin 500 BlD Negative Western Blot with Quest so we did basic Igenix 4 months post lvlG lGG **23-25 **31 **34 **39 **41 kDa + **83-93 lGM **23-25 **31 kDa IND **34 **39 **41 kDa IND **83-93 So the only one that really worried me was band 31. We did an additional band 31 epitope that is 95% accurate. It was NEGATIVE. So my Question is-- can I relax now and say she doesn't have Lyme. Also never herxed from abx (aug. & doxy) or lVlG. Never got worse with prednisone. Thanks!