KaraM

Thanks, Everyone!

I'm posting this for someone in our support group. She's having trouble getting on the board. Her son is 17 and has been suffering since he was very young. Within the last year or two, diagnosed with PANDAS, LYme and Bartonella. He has had at least two IVIGs. He has made some progress, but not enough. He sleeps about 18 hours a day....I'm not sure what abx he is on, but know he is on some. Here is her question... Dr B has just recommended we add 600mg of ibuprofin 2x daily to DS's drug cocktail and I was wondering if anyone out there had any experience with this approach. We are in battle with CIGNA trying to get more IVIG covered and carrying on with a ton of antibx in the mean time. On ray of hope is that H's bartonella rash is disappearing! Thanks.

There are some herbs. My LLMD put me on Banderol and Samento once she felt my symptoms were under control. Last week, however, I found an embedded tick on myself, so I just started with abx again....She said the herbs would not be enough to prevent reinfeciton. So maybe it depends on how far along you've come in your treatment.

Hi Tiffany, Thanks to you and Drew for being such trail blazers here in Boston. Good luck to Drew. I'll be thinking of her and you. Kara

Bumping as a reminder...just two days away!

One last bump...meeting is today. I know a few who wanted to come can't now. I'll post the next meeting data a.s.a.p.

Barbara Devine, the other moderator of our support group here in Salem is a CBT/ERP therapist and a PANDAS mom. There are two other therapists in her practice that also use CBT/ERP... Front Street Psychological Associates: Barbara Devine, Renee Sacks and Michelle Friedman. We used Renee for our daughter. So that's north shore...Wenham is not far from Salem... I'm not up on whether pscyiatric nurse practitioners do CBT/ERP, but Peggy Chapman in Hingham has been on the iist of PANDAS friendly providers for a while... Kara

So I can't respond from personal experience, but rather second hand stories. So take this for what it's worth. Children's does not have the greatest rep in the PANDAS community.... not very "open minded." However, MGH seems to be stepping up to the plate a little bit more. In particular, I have been in communication with a couple of people who have had good things to say about Dr. Pasternack at MGH. Supposedly 1/3 of his practice is now PANDAS. He is a pediatric I.D. specialist. I can try to put you in touch with a the people that have seen him if you'd like. I don't know if they are on this board or not. http://www.massgeneral.org/doctors/doctor.aspx?id=18707 Is MGH part of you insurance plan's network? Kara

Bumping as a reminder...

Bumping as a reminder....

Another vote for Biaxin...

I guess it would depend on what the underlyiing infection is....just strep, or is there MycoP or anything else involved. Have you tested for anything beyond strep (sorry not that familiar with your story....been away from the board for a while). My dd and ds are both allergic to Amox/Augmenting. They are both on two antibiotic...both are on Zithromax. My dd is also on Bactrim and my ds is also on Biaxin. However, they are being treated for Lyme and Bartonella as well....my son also had MycoP.... Others have had some success with Omnicef....that didn't help us much.

We've been using this on both of our children for the last year and a half. We open the capsule and mix it in a half a cup of apple cider. It takes a little while to dissolve all the way just using a spoon to mix. We use a little, $3 mini blender fom Ikea and that seems to get most of it. The really great thing about it is that it can be given at the same time as the antibiotics, unlike most other probiotics. So they use it to wash down the disgusting medicine. We order it online, typically through AllStartHealth.com Kara

Ok - sounds like a plan....

I'll get back to you on this...my dh used to live there and may be able to suggest a good spot. We've been two ships passing in the night the last few days, though...and our weekend is chock full, so I may not post anything until Monday or Tuesday.

Although I will miss her terribly, I am happy to say that my daughter will be in the Grand Canyon with my parents! I am so grateful she is healthy enough to take this long anticipated 10 year birthday gift. She would never have bee able to do this trip if she were in the same place she was two or even one year ago. I may bring my ds12...he will be on vacation from school that week.

I don't have experience on those, but I my LLMD recently felt my symptoms were mild enough to take me off Metronidazol and put me on Banderol and Samento, two herbal tinctures. I have been taking them for several weeks. I have had no adverse reactions at all. Here's a link to one article about it...http://www.townsendletter.com/July2010/sapi0710.html

Actually, I think I may be able to make it after all! We should try to coordinate a place to meet. Kara

I Received the below email from the OCD Foundation. Passsing the word. I don't think I can make it, but my DH is going to try. Hello, The International OCD Foundation would like to invite you and your organization's constituents to a rally in Downtown Boston at Christopher Columbus Waterfont Park on Thursday, June 7th from 11:30 AM - 12:30 PM. We need your help to welcome Denis Asselin as he completes a 525-mile walking journey from his home in Pennsylvania to Boston in honor of his son Nathaniel. Nathaniel took his life last year after suffering from OCD/BDD for 13 years. Denis is walking to raise awareness about OCD/BDD and to raise much needed funds to help the IOCDF. Read more about Denis' journey here: www.walkingwithnathaniel.org Help us increase visibility and awareness for OCD, related disorders, and suicide prevention by attending the rally and circulating the attached flyer to your members and constituents. Only you can help us achieve our goal of 300 strong! RSVP here: https://www.facebook.com/events/189221064532048/ Speakers include Boston City Counselor Sal Lamattina and OCD expert, Dr. Michael Jenike. Rally emcee is WCVB News Reporter David Brown. If you would like more information on this event or would like to partner with us on a larger scale, please contact Mike Spigler at: mspigler@ocfoundation.org or 617-973-5801. Sincerely, Michael Spigler, MCHES Program Director International OCD Foundation mspigler@ocfoundation.org p: 617-973-5801 f: 617-973-5803

Yes, we are having a meeting on Saturday, June 2 at 1:30. It is right in downtown Salem, a 5- 10 minute walk from train and bus stations. The train ride is about 1/2 hour from North Station. Let me know if you want more details on the address and how to get there. Kara Where do you live? There is another member here who has a support group in Salem... I'm in Concord.

Well, I can say I stopped to give him a break, but I was getting advice fromdifferent docs (pediatrician/ENT) and it was prior to seeing an LLMD. My son was on for about 4 months and seemed like he was better. So, at the advice of those two docs, I stopped his treatment in June 2011. We saw Dr. J a month later. He tested him through IgeneX. All came back negative, so we did not restart. Fast forward to December/January...he starts getting major mood swings, sore throats, etc. Tests positive for strep, MycoP and Lyme. He's been back on abx since February/March. How long of a break were you thinking of giving? A day or two or weeks/months. We have given my daughter breaks from the Tindamax. We only give it to her on weekends, anyway. But when she starts getting really edgy, we'll skip a weekend and things seem to calm down. Kara

Hi, We will be having another support group PANDAS/PITAND/PANS (you get the picture) support group meeting on SAturday, June 2 from 1:30 - 3:00. PM or me if you need location info. Thanks, Kara

Hi, We will be meeting from 1:30 - 3:00. PM or email me if you need the location info. Kara

Our stories are similar in many ways. My dd has/had Major PANDAS symptoms. But my ds only some minor things...never officially diagnosed with PANDAS..no OCD or tics...just emotional lability. But last winter we thought he may be causing a strep exposure exacerbation in my dd. He was constantly getting sick, always congested, sore throats, etc. So we brought him to Dr. B., too. He diagnosed him with sinus infection and put on Biaxin and steroid burst. (My ds had been Zithromax shortly before for the strep, but Dr. B. thought that the strep was in his sinuses and the Zith was not reaching it). My son had a very intense reaction after a couple of days on the medication. We got scared that it was result of the steroid but I now think it may have a been a herxheimer reaction. We discontinued the steroid, but continued the abx until we saw DR. B a month later. By that point ds was doing much better, but dd was not. So Dr. B. ordered testing for LYme and co-infections. Both were positive for Bartonella and ds (not PANDAS dd) was very suspicious for Lyme (and just this past January was actually positive for Lyme). So I have two possible theories...it could be, like LLM said, that a different antibiotic is needed. Or it could be a possible herx related to Lyme or other infection die off. I tried to look back at some of your posts to see whether you had done Lyme/coinfection testing (I believe you Lyme yourself, isthat right?). I don't want to harp on it if you feel you've thoroughly explored. Kara

Do you know if the same is true for DAN! docs? I looked around online a few weeks ago to try to find a DAN! doc list, but couldn't find one. I'm wondering if they face similar scrutiny.