KaraM

Well....I mentioned I was on an Online PANDAS support group and asked if I could add her name to the list. She said yes, to that. I'm going to edit the post and confirm with her though. Anyone who reads this and needs her info, pm me. Kara

Massachusetts: Watertown Dr. Jeanne Hubbuch124 Watertown St., Suite 2F Watertown, MA 02472 email: drhubbuch@aol.com phone: 617-744-0401 Fax: 617-744-5346 She is a holistic, family practitioner and uses a combination of western medicine, herbs and homeopathy. She is not a PANDAS/PANS expert (yet), but is willing to run tests, etc. She is a DAN! doctor as well.

I had an appointment with my LLMD today. While I was there I told her how difficult it is for many people to find a doctor that is at least open minded with regard to PANDAS/PANS and asked if I could add her name to our list of PANS friendly doctors. She said yes!! She would not order IVIG..., I don't think this is because she doesn't believe in it, but because it's not her area of expertise. I think if she thought that was necessary, she would refer to someone like Dr. B. At a minimum, she would see patients on an initial basis, to run bloodwork and other tests she deems appropriate. It's a start!!! Maybe as she gets more PANS kids, she'll become more expert in it. She is a holistic, family practitioner and uses a combination of western medicine, herbs and homeopathy. PM or email me if you want her contact info. She is located in right outside of Boston, a few blocks off the Mass Pike. I will add her to the master list. Kara

Mostly I now give my 10 year old Sacchoromyces Boulardii +MOS instead of Culturelle because you don't have to wait a couple of hours after the antiobitics to give it. So I put a capsule in juice at the same time as her medicine. The Jarrow brand I use has 5 billion cells of SB. When the timing looks like it will work out, I will give Culturelle instead of one of the SB doses. I give an adult capsule (mixed in juice). Those capsules contain 10 billion cells. When I used to give Culturelle (when she was 8), I actually gave her an adult capsule a couple of hours away from her medicine (so twice a day). You may want to consider mixing it up a bit, one Culturelle and one Sacchoromyces a day. Kara

Great idea! Count me in! I sent you an email. Kara

Have you given your doctor a copy of the white paper that was released or the NIMH website info on PANS? Maybe that will help convince that antibiotics can be given longer. You can access both through at www.PANDASnetwork.org I remember those days very well...not wanting to go home, be home, be with my daughter. It is heartbreaking. Hang in there. You are on the right path. Things can and will get better. Kara

Welcome. And it looks like you did get to a good PANDAS doc, with Dr. B. So you are on the right path. When did you see him? HOw long has your son been on the Augmenting and Prednisone now? Have you seen any improvement with those two medications? Is he on any of the psycy meds still or did you take him off of all of them? Kara

I can totally understand how lost you are feeling right now given all you and your children are going through. So many things at play. So many directions you could take. I've seen a few people mention the Singulair...that drug is one that I think can be a life saver for some in terms of their asthma/allergies but wreak havoc for others from a neuro/psych perspective. The list of side effects often mirrors PANDAS symptoms (i.e. I know aggression/rages/depression are some of the possible side effects and someone above mentioned tics). We stopped it in January as an experiment to see whether that what was causing my son's emotional lability. The jury is out as to whether it made a difference. Now that spring is upon us, I may have to put him back on it. That might help us decide. Anyway, I guess I'd echo the recommendation to consider removing the Singulair...but only under the guidance of a doctor and close monitoring of the symptoms Singulair is supposed to relieve. Are you seeing an LLMD? What does s/he think? I think someone else also asked if it could be herx. When we added Bactrim to our Zithromax mix, that's when we started seeing both herxes and subsequent improvement. You just added it a week or two ago, right? So I think this could be a possibility as well. What are you doing for detox? Lyme is a long haul for sure, with many spikes along the way. Kara

Hi, We will probably meet in another 6 - 8 weeks, but don't have a date set yet. There is a group that meets in Hanover....I think MADBAY coorinates it. Here is a link to her post (scroll to the bottom) that tells you when and where. If they are sticking to that schedule, then there may be a meeting coming up Monday.... http://www.latitudes.org/forums/index.php?showtopic=16438 Here is a link to PANDAS Resource Network's support group page. It looks like there is also a group in Framingham. If you contact PRN, I'm sure they can get you connected with the organizers. http://pandasresourc...ort-groups.html I hope this helps. ara

I really need to dig through some mounds of paperwork to find out for sure, but I when my dd tested positive for Ehrlichiosis in August, she was already on Zithromax and Bactrim for Bartonella. We stopped one of them (i think it was the Zithromax), stayed on the Bactrim and added Minocycline (I think) for two weeks. Then we resumed the Zitrhromax/Bactrim combo that we are still on to this day. (In November, we added Tindamax on weekends for Lyme). I'm hoping we are getting to the the point where we can say she's better, so we can start the 2 months count down to stop antibiotics. She achieved a huge OCD milestone today, overcoming a fear that she has had for almost two years! (Not trying to hijack the thread...just fresh from victory and hopeful for her and everyone else). . I will double checkmy records to confirm if my memory is correct...I just don't know when I'll get the chance to do that. I"m pretty sure this is what we did, though. .

I've been thinking the same thing...

Thanks Nancy and Rowingmom. The doctor said she thought it was a herx, since it didn't seem to be constant. She told me to stay on the doxy until our next appointment in a few weeks (unless it becomes constant).

Ok...I started Doxycyline about 5 or 6 weeks ago. Since then, my body has had some odd things happen...nothing extreme or majorly uncomfortable, but noticeable and some weird. When I look some of them up online, they appear as both Lyme symptoms and as side effects to Doxycyline. The one I am most concerned with is skin tingling. It started with my face a couple of weeks ago. That comes and goes when I am outside,depending on the weather I think. Just yesterday, my hands started getting numb and tingly...the tips of my fingers, between my knuckles and the backs. Has anyone else experienced this? Do you think it's a herx type reaction or a side effect of Doxy? I have an email into my doc....but just thought I'd throw it out here for some opinions. Thanks, Kara

You are doing the best you can. I agree. Do not beat yourself up. There is a lot of pressure by regular docs to get vaccines. They just seem to assume that everyone would want them...they don't even think to ask if there would be a reason not too. And there isn't any "official" info to say PANDAS kids should avoid. Keep the faith. Your son will get better. You are a great Mom!

Stephanie, It is strangely relieving to get that positive test - especially when there are no "typical strep" symtpoms. However, I have to prepare you that 10 days of Omnicef may (will probably not) be enough. You may want to arm yourself with the latest information on PANDAS. The White Paper recently published and a printout of the most recent NIMH website. You can get both of those at PANDASnetwork.org. You may need these to convince your pediatrician to prescribe a longer dose or a different antibiotic. In the meantime, you may also want to make an appointment with a doctor who is well versed in PANDAS/PANS. Even if you have to travel, you will save yourself a lot of trouble and frustration and help your child more quickly and thoroughly if you go with someone who has a lot of experience with PANDAS kids. What part of the country do you live in? Most of the PANDAS experts are on the east coast. There is one in Chicago as well. Best wishes, Good luck! Kara

Hi Colleen, Between my two kids, I've had similar experiences (different experience with each child). With regard to stopping meds and reintroducing: last year, after starting my son on prednisone and Biaxin (and I think Zithromax) for a sinus infection, he started having major pain under his arms, in his lower torso and lower back area. We were afraid it was a negative reaction to the meds. As he did with your child, Dr. B. had my son stop all meds. Then, once symptoms subsided, add them back one at a time. The symptoms subsided within a day. We ended up adding the antibiotics back, but not the steroid. I was afraid at the time the steroid was causing the problem. Looking back now, though, I wonder whether it was a Lyme herx (since we have since found out he has Lyme). My daughter was also on a steroid last year as we tried to calm her immune system down after what we thought was an exposure exacerbation. During that time, she got sick as a dog with the stomach bug...like nothing I have ever seen. She is normally very healthy, physically. I wonder whether the steroids made the stomach bug easier to manifest in her system. What was interesting, though, is that during that time with the stomach bug, her OCD was far less than what one would have expected. After, it went through the roof again. Anyway, I don't know that any of this helps you at all, except to know that you are not alone. I think the advice to try one med at a time is good. I also agree getting into the LLMD asap would be wise. Maybe this will add some urgency to the matter so that they will squeeze you in. Sorry we didn't get to see you at the meeting Saturday....maybe next time. Kara

Thanks, Tampicc! Kara

Hi, I remember a year or so ago someone mentioned a company that had facilities across the country that do IVIG. I searched, but can't find the post. Does anyone remember the name of the company? Thanks, Kara

Hi, My dd tested clearly positive for Bartonella as well through IgeneX in March of last year(ordered by Dr. B. She had already been on Zithromax for close to a year for PANDAS. We added Bactrim to the mix. We then saw Dr. J. in July. He re-tested her for everything. That time the Bartonella came back negative. He did not stop the treatment though. We are still treating her to this day. His philosophy is to treat for 2 months after all symptoms have cleared. When she tested negative, she was still exhibiting symptoms. It's been a slow but relatively steady climb. She would herx along the way but would usually come out stronger on the other end of the herx. I believe we are getting close to the point where we may be able to start our two month count down. My dd's primary symptoms were OCD, rages/depression/emotonal lability, ADHD like behavior, some academic deterioriation. What were your daughter's Lyme and other co-infection results? My dd's IgeneX results for Lyme were negative. However, this past November, when we looked back at some records from a few years ago, when Dr. B first ran a Lyme test through a regular lab, one specific Band did show up (making the test look negative to most doctors, but indicating to Dr. J. that there had been exposure to the Borrelia bacteria that causes Lyme). At that point, Dr. J. added Tindamax on the weekends in addition to her Zithromax/Bactrim mix. The theory is that the Lyme was in Cyst form due to the antibiotics she had been on. The Tindamax breaks open the cysts so the Zithromax and Bactrim can reach the bacteria. He thought that this might be the treatment that would get her to the finish line. Kara

I just found this explanation of interpreting wb. It shows a picture of how bands show up on the test. http://www.lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html

Reinfection sounds possible to me. Have you read "Cure Unknown" by Pamela Weintraub? She talks about this happening with her family members... I highly recommend the book. Among other things, It will help you understand all the controversy around the different criteria for positive test results.

Three of us have LYme. I don't recall any of us getting a tick bite...never an EM rash. My daughters were all neuro-psych. She is/has been as healthy as a horse from a physical standpoint. She also has Bartonella.

Bumping one last time. If you asked for location and I didn't reply, please let me know. Thanks, Kara

Bumping one last time. If you asked for location and I didn't respond, please let me know. I think I responded to all, but am not sure.

Our dd's issues became obvious over a period of a few months. It started at the ed of the summer with questioning about the Swine Flu...progressed to some hand washing...then more handwashing...then clothing getting contaminated...till one day, she couldn't get dressed. IT was not sudden, extreme, overnight onset. But it was pretty clear to us that she was not the same child she was 6 months before. Ater a few more months, we got a PANDAS diagnosis. We treated with abx successfully for about six months, then she declined. We eventually found Lyme and Bartonella. I sometimes wonder whether maybe PANDAS (where strep is the culprit) may cause more of the overnight, sudden onset, and something like Lyme or Bartonella builds and festers more slowly. This is just me wondering... I don't think anyone can say for sure whether the OCD, etc. that results from Lyme is due to the infection being in the brain versus the antibodies attacking the brain (the theory being PANDAS).