Teri

Does that sound crazy? Just thinking .... DD6 has been seemingly flaring since late December. She lost her first tooth on 1/2. We did a steroid taper the second half of January. She just lost her 2nd tooth this morning . She has been struggling again since the first week of February again with tics and new OCD behaviors. That is when the 2nd tooth really became loose. Just makes me wonder .... Had blood work done today so I guess we will find out something.

So frustrated, confused, and sad for my DD6 (PANDAS,Lyme, Bartonella). She has been doing quite well ....started school (Kindergarten) and was doing well. In late December although she was doing relatively well we started to see her tics creep back in. We saw Dr.B and he looked at her bloodwork. There was a slight elevation in her Anti-DNase. He seemed to think that she may have a sinus infection. He put her on a 13 day steroid taper. Initially we saw her tics explode - new loud and frequent throat clearing tics came out during days 4-7 but eventually went away. During the 2nd week of the steroids she was the best we have ever seen her. The next couple weeks were really good for her - no medication arguments, no stalling with daily routines - getting to school was easy. Shortly after finishing the steroid we started to see tics creep back and OCD behaviors increase. She is also far less verbal when she is not feeling right. I emailed Dr.B and her medication was changed from Cipro to Omnicef. She is also taking Azithromycin and Lamisil daily. We are on Day 5 of Omnicef. We saw a difference immediately on Day 1. However she is really struggling with tics and OCD behaviors which include touching things,chewing and twirling her hair, licking her fingers, and then rubbing her face. On Sunday she had rubbed her face in different spots so much that she had red chapped marks all over her face. She is fully aware of her challenges and is frustrated with herself. She is actively trying to fight the urges but it is hard for her. Her teacher is also reporting that she is seeing more frequency and a greater volume of her tics ( eye blinking, hair twirling, and head nodding). I am going to email Dr. B. Could this be herxing from a new abx? We first saw OCD behaviors in the summer when we believe she started to struggle with Lyme / Bartonella. We have an appt. with Dr. J in mid March. Any words of wisdom for us?? Teri

Are you using cefdinir as not to use Rifampin for Bart due to your DD's age? I think all of these suspension meds have nutrasweet in them which IMO is a terrible sweetner and gave me horrendous migraines. I hope this time is the charm. Maybe you had a herx rxn before? DD is allergic to many antibiotics. She was on Cipro and today is day 1 of Omnicef. Not sure where Rifampin falls in the antibiotic categories.

About to start an Azithromycin / Omnicef combo with DD 6 (Dx PANDAS,LYME, & Bart). She has been on an Azithromycin/Cipro combo since 8/12. We have had some behavioral reactions to Omnicef 2-3 years ago and could not complete the prescription. At the time we wondered if it was a reaction to the dyes or artificial flavoring.?? That was a while ago and we are hoping to have a different experience now. It does make me wonder what the cause of that reaction was .... Crossing my fingers this is a good combo for her!

Good luck - will be thinking of you tomorrow . We have an appt next month - a five month wait. I read a response to expect lots of bloodwork. Does anyone know if its through IGenex? Want to be prepared - financially that is. We were shocked by $900 worth of bloodwork we needed to do back in August @ Dr.B's. wondering if we should expect that again?

Dd is still on daily antibiotics - Azithromycin & Cipro. We have been doing that combo since August so that is not new. The steroid was new and the bad breath issue has cropped up since completing the steroid taper. Dd has never cultured positive for strep, had a sore throat, and was asymptomatic when her initial ASO titres came up sky high. Dr. B suspects her strep hides in her sinuses or adenoids. She was last seen by ENT in October and he is able to see her adenoids . At that time they were 2x the normal size but it wasnt cause for concern - typical for her age. To put things on perspective - at 7 months she had a 90% blockage of her airway from swollen T&A so we know it is an ongoing issue. (She spent the first 6 months of her life in an orphanage). With all that swelling - she was not sick & didn't run a fever until sometime after 18 months of age. ENT felt that the swelling was from an immune response to being exposed to infection after infection. My gut is telling me that the "poop" breath is a sign of something for sure. I think I will email Dr. B.

Thx for your reply. She has long had issues with swollen adenoids & sinus infections. Less than 3 weeks ago she saw Dr.B & he thought there was a sinus infection brewing. He put her on a 13 day steroid taper which according to our local allergist opened up her sinuses. She has been off steroids for 10 days now. She had elevated titres and we were seeing symptoms begin to resurface. So surprising though bc she is on two fairly strong abx. .. Not sure what I should do .? Any words of wisdom for me?

Hi folks Just recently I have noticed that my daughter's breath is smelling bad. This is a relatively new development for her. She finished a steroid taper about 10 days ago. She takes Azithromycin , Cipro, & generic Lamisil daily. We added in some Motrin a few days ago as she was flaring. I am a little worried as to what this could indicate. She has no cavities/fillings or signs of tooth decay. She is about to lose her 2nd tooth. Anyone else's child experience this ? Any advice ? Thanks, Teri

Hi Lisa Welcome! Another Jersey Mom here -we are in Central NJ - not far from you. Dd is 6 and diagnosed with PANDAS, LYME, & Bartonella. We have been officially on this roller coaster for over a year now but we/Ped. Suspect she has had it longer.? It's not easy journey but it will get better! It is also stunning to us that very few people are aware of PANDAS. We have tried to explain it to family, teachers, and friends. It's exhausting because so many people just don't get it. Our DD is a perfectionist and works very hard to hold it all together at school - which she is able to do pretty well. It all comes out when she gets home. Right now she is just coming off a steroid taper and doing pretty well. She currently takes Azithromycin & Cipro daily. Someone gave us some good advice - choose faith not fear! Have faith she will get better! You're on the right track now! Peace, Teri

I feel very confused! I don't really want to jump on the band wagon but we see Dr. B also for the past 11 months. Due to go back on 3/4 so this really perks my curiosity and sends me into a bit of a panic. Can someone shine some light on this situation?? Teri

That is really hopeful. We have seen some amazing results so far. Crossing our fingers that the tics subside!

Hi I've been following your post and hoping to learn a little something. I had wanted to post on a similiar topic but never got around to it. DD 6 is dx w/ PANDAS , LYME, & Bartonella. She has been on Azithromycin daily since 3/12 and Cipro daily since 8/12. A facial, head, & neck tic started it all for us back in Oct. 2011 (among other PANDAS symptoms) but she improved when she was on Azithromycin. Suspected Lyme & Bartonella gave us new symptoms last summer but adding Cipro in August seemed to really help her healing. We started to see the hint of the tic coming back in late December but overall she was doing very well. Dr. B put her on a 13 day steroid taper to address a suspected sinus infection / inflammation. We were apprehensive to use steroids bc we had read that it can make things worse. On day 4 of steroid taper we saw an explosion of tics - old ones and new ones (very loud & frequent throat clearing). Tics stayed the same pretty much day 4-7. We kept her home from school because the tics were very pronounced and we knew she would be embarrassed. On the first day of tapering down the loud tics only occurred right before bed when she was really tired. The frequency of the tic has decreased but we are still seeing tics. She completed 13 day taper 3 days ago. Amazing results in terms of behavior - so cooperative, no medicine battles, and is doing some great academic work. Every transition is a battle when she is not well. It has been so long since we have seen this healthy side of her that we nearly forgot what she was really like. . We are praying the tics subside. On the way to school she tics like crazy and told me she is trying to get them all out before school because she holds them in at school. Hoping you get the results you are praying for !! Anyone have any advice on what can help tics.? Supplements etc... Wishing you the best Croatian Mum - Teri

Congratulations!! Thanks so much for this post - it is really encouraging to read! We are one year in and finally starting to make some progress. We also see Dr.B and have an appt with Dr.J in March. We see some good signs of healing in our DD6 but are still in the "two steps forward & one step back" stage. Dd (PANDAS/LYME/Bartonella) is on Cipro/Zithromax combo but we are hoping to come off Cipro and start Tindamax in January as per Dr.B.

Just to chime in with medication info. We are exactly one year into this PANDAS battle. DD 6 was on Azithromycin on and off for about 4 months (prescribed by Pediatrician). Two months into the battle we saw symptoms creep back as soon as she was off RX. Pediatrician was treating conservatively - was dosing Azithromycin 5 days on - 5 days off. Dd is allergic to amoxicillin & omnicef. We sought a specialist because we thought we needed a more aggressive treatment plan. DD has now been on Azithromycin 200mg daily for 9 months. She is also on Cipro 100mg 2x per day for the past 3 months to treat Lyme/Bartonella . She has also been on Diflucan or Lamisil to treat yeast infections during this time. Teri

I did get to listen to NPR's program - really intriguing! What does this mean for our kids? Definitely related !

For adults or pediatric? There is a pediatric LLMD (Dr. C) in Chester County, PA. I don't have any personal experience with her though. I can pm you some names in NJ for adults (again, no experience). Looking for an LLMD for an adult - me. Found one in Jackson, NJ but haven't called yet.

Hi - can anyone recommend an LLMD in the Central NJ or Bucks County , Pa area?

Proud to say that our Pediatrician's letter to the Editor is first on the list. We are so lucky to have a Pediatrician that is open minded and knowledgable! She has supported us every step of the way in this challenging journey and we are so grateful to her! Teri

I'll copy here, in case the link isn't available later: PARENTS AND DOCTORS REACT As a pediatrician and a mom, I just want to thank Neil Swidey for his article on PANS/PANDAS (“The Children Who Change Overnight,” October 28). Too often medical professionals are unwilling to acknowledge what we do not know or what does not easily fit into a diagnosis that we have been taught. I have many PANDAS patients in my practice in the Philadelphia suburbs, and I admit to each one of them that I am learning right along with them, being open-minded, as pediatricians need to be. Thank you to Swidey for continuing to spread the word. Dr. Heather Orman-Lubell / Yardley, Pennsylvania I am a physician whose oldest son was diagnosed with PANDAS in January 2009. His case was severe. Thankfully, as a physician, when I would walk in and tell his story, my colleagues would listen. He is now 11 and thriving. Two years ago my second son started showing symptoms and has required both antibiotics and IVIG (intravenous immunoglobulin) to heal. My daughter, age 6, woke up one Saturday six weeks ago with severe anxiety, a tic, and OCD. I took her to the pediatrician, and sure enough she was strep positive. Three for three now. I can’t thank Swidey enough for his interest and thoroughness. This discussion needs to be brought to the attention of all parents and pediatricians. I am convinced, though, that PANDAS is not rare, just rarely diagnosed. Dr. Claire Bowles / Charlotte, North Carolina My daughter was an athletic, smart, well-liked, beautiful 10-year-old who turned overnight. She could not sit down even at school or in the car, would not eat, and was obsessed with exercising. We were told by Children’s Medical Center in Dallas that she was an anorexic and needed inpatient treatment. They would not even entertain any idea that it could be caused by an infection. We did not send her to their inpatient program but spent a year with counselors, doctors, antidepressants. We even took her to a one-week out-of-state eating disorders program. We had heard of PANDAS from her nutritionist and felt sure she had it because she had high blood strep levels, but needed the counseling to help until she was better. Twelve months later, for no apparent reason, our daughter came back. She returned to her friends, her sports, and her life, eating normally, like an 11-year-old should. I took her in for blood work, and her strep levels had returned to normal. She is now a well-adjusted 14-year-old. She will not talk about that year, but I will never forget it. I wish I could do more to get these doctors to believe that this is a real condition. Karen Nichols / Longview, Texas As the mom of a PANDAS kid going on four years, I know what a difficult battle it is. Every doctor who agrees to see you and with the diagnosis is a godsend. Getting this information out to a broader public is essential to prevent misdiagnosis and incorrect treatment, but simply having the public more aware helps all of us living with this health challenge. Deborah C. Penney / Memphis I am a PANDAS mom in Sweden, and Swidey’s article is so well written and informative that I am spreading it to everyone I know. Being a professional in the autism field, I can also say that this PANDAS battleground has many traits in common with the situation regarding autism 30 years ago. It is just that the world wasn’t so connected at that time, so the battles weren’t going on in the open. The professionals were thinking that autism was caused by bad parenting, and for years and years mental health professionals could not see outside this paradigm. At least not until parents pushed and pushed for change, and got some professionals on their side, did we eventually get a new paradigm. That is where PANDAS stands today. With time, more open-minded scientists are moving toward the new paradigm, while others continue to cling to the old. It is a difficult situation for scientists to stand between paradigms. But eventually a scientific revolution takes place and the paradigm shifts. We have seen this happen over and over in science. What is really helpful is that articles such as Swidey’s can make the paradigm shift sooner rather than later. Gunilla Gerland / Stockholm Thank you for your thoughtful article on PANDAS. My 9-year-old son is now doing well as a patient of Dr. Denis Bouboulis after a harrowing ordeal of sudden onset, confused doctors, misdiagnoses, treatments being stopped because they worked (incredible as that may seem), and a year of missed school. We were fortunate enough to find Dr. Bouboulis, and the antibiotic treatment has my son back to about 75-80 percent. IVIG may be next for him; we’ll see at our next visit. I hope that balanced reporting like Swidey’s will help sensible doctors to consider the patient first, not the “controversy’’ that seems too often to get in the way of helping our kids when they need it most. John Egan / Warwick, Rhode Island

Hi folks, My DD6 is dx with PANDAS and this summer tested positive for Lyme & Bartonella. I pulled a tick off of her abdomen - it had been there maybe 12 hours & was not yet engorged. She did not develop a bulls eye rash but got sick about 3 weeks later with a long lasting low grade fever and stomach cramping, loss of appetite. Five days before I pulled the tick off of my daughter I found a tick on my inner thigh - fully engorged. It had been there probably 48 hours or more. I had bruising from the bite - about a half dollar size circular bruise around the bite. I called my Dr. and the office said to watch for flu like symptoms and bulls eye rash. Six weeks later I had periods of night sweats and would wake up dizzy & my balance was off. I thought perhaps that maybe it was hormones. I also developed some rashes on the front/ back of my neck, inside of elbows, and behind knees which I thought was perhaps prickly heat or eczema - things I haven't experienced since childhood. Those symptoms were all in the summer. The dizziness & night sweats resolved but he rashes are still with me and have actually spread to my inner thighs. I now know its not prickly heat as its not hot here in NJ. Rashes are worse at night ! I am wondering if these are signs of a tick borne illness?? Any advice or experience with similar symptoms? Itchy and wondering in NJ - Teri

Good to hear - we have a medication issue as well.

Thanks for your feedback. With regards to the medications that my daughter is on ....back in May when she was bit by the the tic she was on Azithromycin already. In August Dr. B added Cipro 2x. a day. So she has been on both Azithromycin & Cipro for almost 8 weeks now. Dr. B consulted with Dr.J and he agreed that this combo would target all three: PANDAS, Lyme!, & Bartonella. We cannot use Bactrim, Amoxicillin, or Omnicef as DD is allergic to them. Dr. J feels it will take a while for her to heal ... So we will stay the course for now.

As per Dr. B's recommendation our DD 6 (PANDAS/Lyme/Bartonella). Will not get the flu shot this year. We believe that the immunizations she received last fall ( DPT booster & combination flu shot) was the tipping point that triggered her PANDAS. My question is .... Should other family members get the flu shot or is there a risk of exposing her?

No - not in her belly button. It was actually on her side on her rib cage. She is very sensitive to bug bites so I noticed the red bite mark. Initially thought it was a mosquito bite with a small scab on it. As I looked closer I could see it was a tick attached to her. I actually had pulled an engorged tick off my inner thigh several days before that so in a way I was kind of "on alert". My own Dr. Only wanted to test for Lyme if I had any of the classic symptoms (bullseye rash, flu like symptoms). I have had none of these although I have had some unexplained rashes since July.?