Teri

We are heading to New Haven on Monday for a follow up appointment with Dr.Jones. First just wondering what to expect at the follow up.? Dd7 has only had IGenex labs run once at Dr.B's and that was almost 1.5 years ago. She has had nearly monthly labs for Dr.B in the last 8 months or so but no specific Lyme testing. She was positive for Bartonella and Lyme not CDC standards but according to Dr.s B & J. She did have a deer tic bite 3 months prior to IGenex testing and had already been on abx for PANDAS for months prior to the bite. Following the Igenex testing she was put on a combo of abx which is where we have been since 10/12. Trying to mentally (and financially) prepare for the appointment. We generally run labs down here close to home to ahead of Dr. B's appointments because it causes a lot of anxiety for Dd. Also can anyone recommend a place to stay and any kid friendly activities in the New Haven area? TIA Teri

He may need a stronger abx than amoxicillin .?? Have you tried dosing him with Motrin? My dd is 7 and we have been dealing with this for 2+ years now. She has been on abx the entire time - currently a combo of three different ones as she tested positive for Lyme & Bartonella too. In the beginning when this all started dd began with tics following what we thought was a viral illness and her 5 year vaccinations & flu shot. Ped. was open enough to test her for strep and suspected PANDAS but fairly conservative in putting her on abx. Dd is allergic to amoxicillin so she put her on a Azithromycin - dosing 5 days on / 5 days off for 30 days. As soon as we finished with abx symptoms would return. We also saw an ENT, Child Psychiatrist , and Ped. neurologist in the beginning. Once she had the diagnosis we saw a specialist. He has been managing her care ever since. Stay strong!

Thanks for the responses. We started the Biaxin on Saturday - 1 1/4 tsp 2x per day. After the second dose on Sunday night dd couldn't eat dinner and complained of a stomach ache. She didn't sleep well last night and was up 2 hours earlier than normal this morning.:-0. She said she was hungry which made sense but soon complained of a stomach ache after breakfast. Dr. originally prescribed Azithromycin but insurance would only cover 12 days. I hate that the Insurance company gets to decide which meds you can have! We have BC/BS - pretty good insurance overall. Dd7 is 44 lbs and is also taking 300 mg Cefdinir, 150 mg Rifampin, Nystatin, and we give Florastor as well. Stomach ache could be Bart. herxing. Dr. told us to back off to once a day if she got worse or suspected a herxing reaction. Stomach aches are a Bartonella symptom if I am not mistaken. So I didn't give dd the morning dose before school. Hoping she can tolerate this abx. I think I am going to ask the Dr. to change the Biaxin to the pill form. We can split it if it is in tablet form. When I asked the pharmacist if it came in another form - she said it would be too hard on her stomach. Now I am hearing that some of you folks do split the tablets - wondering why we can't do the same. We are past liquids thank god .... Getting her to take the liquid just adds another layer to getting her to take the meds!

Meant to comment on this post earlier .... We are right there with you. Dd7 is in the midst of losing all kind of teeth - three in the last few months. Another one is loose now. Well she has been flaring since mid November. :-0. She is on a combo of 3 abx (she is Lyme/Bart also) and we were convinced she had picked up some kind of infection. All her lab numbers have been going down since September which is great! Trying to figure out also if the teeth are generating this flare.

Hi all, I am wondering if anyone else's child is taking Biaxin? If so, what is the dosage and what form ? My dd7 just had a med change : she is also on Omnicef, Rifampin, and Nystatin. After 2 years of being on daily abx, she is doing only pills. The most recent med change to Biaxin came in a liquid form which she has to take 2x per day (125 mg). She hates it and puts up a big fight. A pill would be so much easier. The pharmacist said it only comes in a 250 mg pill - not sure if that is capsule or tablet. Dr. originally wanted her on Azithromycin 250 mg 1x per day but insurance wouldn't cover 30 days of this abx. If your child is on Biaxin, what is the dosage and what form is it in? Dd is 44 lbs. any input would help! TIA Teri

Hello friend , Just wanted to chime in. Those are two strong antibiotics so it could be either one of them! Definitely need a good probiotic! My dd7 takes Florastor and it can be taken anytime. I personally cannot take Augmentin as it really bothers my stomach! Good luck! Teri

So sorry for the wasted time, $, and disappointment. Not that surprised but the CHOPS Dr. Is narrow minded. If I were you I would see a Dr. that can at least get you moving towards healing. See you're previous post about your son's bloodwork .... And the responses that follow. There is a local Pediatrician out of Yardley Ped. that may be able to help get you started on some abx. She is my Dd's Pediatrician. Bring lab work. If you rally feel like its PANDAS that you are dealing with .... I would also schedule an appointment with a PANDAS specialist ASAP (Dr.T in North NJ or Dr. B in Conn.). Dr.B manages my dd PANDAS. Most of us that have been in this boat have had similar experiences. Ours happened to be with a Pediatric Neurologist at St. Christopher's who we saw to rule out any neurological causes for Dd's sudden onset of tics at 5 yrs old. She brilliantly told us "Some kids have tics, some kids don't." Thanks Doc! Don't give up! Teri

Hi Janny Just want to chime in here. Not sure what your child's symptoms are ..... But the numbers in his blood work are a big red flag. With reference to Dr. Orman-Lubell .... She is my daughters Pediatrician. She works at Yardley Pediatrics and she has always been our Pediatrician. She is awesome!! She is NOT a PANDAS specialist but she is open minded. We are still grateful to her everyday for assisting us in an early diagnosis for our dd. Within one month of symptom onset, she ran labs, cultured for strep, and referred us to a Ped. neurologist to rule things out. To confirm diagnosis, we also saw Dr.Elia who was then at CHOPS. My daughter didn't have any "typical" symptoms of strep. She's a great Pediatrician - loving, compassionate, and respects parental input! To manage Dd's PANDAS we see Dr.B in Darien, Ct. We keep her updated on Dd's condition. If you are looking for a new Ped. , she's great. As far as personal experience with PANDAS I don't know about that. If she suspects PANDAS in your child, she will likely refer you to see a specialist. She is open to learning but not too proud to defer to Dr.s that have more experience and PANDAS specific knowledge. Good luck .... I am close by just over the bridge in NJ. We've been on this roller coaster ride for 2 years now. I wish I could say it gets easier. Would be glad to offer you any advice that might be helpful. Hang in there .... Teri

I am floored that you are already ready for IVIG. We are two plus years with non-stop abx - combo abx, two steroid tapers, endless Motrin , and we are again in a flair. I have to admit .... I'm jealous. Praying it works out for you!

My dd7 always gives us a hard time taking meds when she is feeling bad & needs it most! Currently she takes 8-10 pills a day plus probiotics, Motrin, & vitamins when she is feeling pretty good. She would become convinced that she "can't swallow them ... They will get stuck." When she was on liquid it was that it taste bad and I can't do it. When it's bad .... We have to set a timer for a certain amount of time or no media (tv, computer, iPad or electronics). My advice is to get Motrin into him ahead of the abx. Don't reward him for taking meds ... Require him to take meds to access whatever his currency is .... Which sounds like video games. It's critical to his healing that he takes his meds.! We tell our daughter that she needs to talk back to her PANDAS. Its playing a brain trick on her by telling her she can't do it. I know it's easier said then done. Hang in there and good luck!

Good morning all, Just wondering if anyone can shed some light on our current situation. Dd7 has PANDAS/Bart/LYME/ Myco - dx with PANDAS 2 years ago with the Lyme & Bart dx coming about 8 months later. Still trying to get her back to baseline. Our latest flare I think was caused by a stomach virus. We saw tics and behaviors come before the bug. She then had a strep exposure at school. We are on Day 11 of a steroid taper. She is currently on a combo of Rifampin, Cefdinir, & Cipro plus Nystatin, Florastor. She had daily dosing of Motrin during the flare plus Benadryl at night. By day 7 of the prednisone taper we had to start giving Motrin again. My labs have repeatedly come up with high ASO & rising myco despite the following abx - 30 days Keflex, 60 days Cipro, and most recently 30 days of Doxycycline & Rifampin combo. I think my strep titres dropped from 574.5 to 557 after the combo abx.?? Myco went from 368 to 610.??? Now doing another 30 days of the same combo. Thinking Dd has high Myco again despite all the abx?? How can that be? She has been on abx for 2 years daily - and a combo for about 16 months. Also anyone know why I can't bring down my strep and/or Myco numbers. Wondering where we go from here?????????? Any thoughts appreciated! Teri

I have to chime in here. We see Dr.B and he is an amazing Dr.! He is brilliant, compassionate, and professional. We have been traveling to Ct. Since March of 2012. Dd 7's onset was 9/11. I believe the issue with the secretaries is that the practice has grown tremendously. Half of his practice is dedicated to Allergy patients and he also sees a large number of PANDAS patients (I have heard in the neighborhood of 1,000). I don't think they can handle the demands. So it's not just you - I have been on the other end and felt the frustration. Insurance coverage was one of the first questions we asked as we made our appt. We waited 3-4 months for our initial appt with Dr.B. and he is well worth the wait.

Welcome to the forum ....looks like you are in the right place! Our story is similiar to yours - asthma, allergies, SPD, and the tipping point for us was illness, strep exposure, followed by 5 yr vacc. Including the combo flu vac. Within days we had tics - two years later we are still battling to get our DD7 healthy. We see Dr. B in Conn. And we waited 4 months for the appt. it was well worth it! I would get on the cancellation list ASAP. Peace, Teri

My advice also is to keep your focus on how PANDAS impacts your son specifically and what he needs to be successful. We just had our 504 meeting last Friday. Dd7 is in 1st grade and doing well at school. We wanted the 504 in place as more of a proactive step for her. It is a daily struggle to keep her healthy! In our meeting we brought the School Nurse article, PANDAS fact sheet, and a PANDAS fact sheet from OCD foundation website. We wrote a brief, bulleted synopsis of Dd issues and what PANDAS looks like for her. We included information like the specific symptoms that would indicate that a flare up has been triggered. We made sure to explain that Dd does not get physical symptoms of illness right now (fever, sore throat, etc..) but rather neuro reactions - tics, compulsions. That was all new for them. We wrote out specific accommodation requests for her - all were reasonable & would not cost district any $$. School was very cooperative and literally incorporated all accommodation suggestions. So go into the meeting prepared. Know what you are asking for your child and provide school with brief info & access to resources. Good luck! Teri

Augmenting is tough on the tummy for sure - I cannot handle that one. Make sure you are giving her a high quality probiotic!

Thanks folks for all the input ! Our primary reason for implementing the 504 is that I want something formal that documents & validates the condition. We openly shared our situation with the Principal and she was very responsive to our concerns. She assisted us with appropriate class placement for Kindergarten and also personally placed her with the current 1st grade teacher. We really feel like the school knew our kid. They cheered her on when she was finally able to muster up the courage to ride the bus and order lunch for the first time ( she also has nut allergies). However, the Principal has just retired and the Vice Principal leaves 10/1 for a new job in another district. The school counselor is good but very young and only I. Her second year. With all the change we felt it wise to have something formal in writing should the need arise. As for modifications, Dd is very bright and able to hold her own! She is however, a perfectionist and very aware of when she is not perfect. When she is in a flair .... And it will happen ... I want her to also be able to take a break. The pressure and anxiety of holding in tics will make a school day very difficult for her. Sanitizing desk and hand washing frequently is a must. She already tells me they have to go from recess to lunch - no time to wash hands. Stamina is also an ongoing issue - she is always exhausted. As homework increases, it may be difficult for her. The water bottle issue - I have already told her that she is not allowed to drink from water fountains. She brings one every day and appears to have access to it. Educating the teacher and counselor seems like a daunting task and I am going to take your advice on this one. That will not be my focus because it's not my job to to do that. It's only my job to increase your awareness ... and to discuss with you how that impacts my kid in school. Last year she had a big flair in the Spring - we saw a huge increase in tics / compulsions. When I emailed the teacher to tell her what we were seeing at home and inquire did she see anything at school - she said "Oh yeah we are seeing some of that too." I volunteered at the school Field Day shortly after and was so upset by what I saw. My Dd's new tic or compulsion was to do like a half squat with her legs. I watched her and she literally did it every few seconds. Yeah - I want to know if you see something odd that she is doing before it snow balls. I don't think she will need many modifications unless she is in a flare. Just to clarify - dd 7 is on daily doses of multiple (3) antibiotics. Still feel like we are constantly beating back some kind of "trigger". We are treating for PANS/LYME/Bartonella . Thanks, Teri

Good morning friends, On Friday we will be meeting with the School Counselor & Teacher to begin the 504 Process. Dd- now 7 is in 1st grade. She is PANS w/ LYME & Bartonella. When healthy she is fine and does well. When in a flare we see tics, hyper activity, extreme mood changes,anxiety, regression, medicine battles, and OCD etc..- you guys know the drill. Dd is a big rule follower and works very hard to be perfect at school. In school they have really only seen assorted tics & compulsions which they usually tell me that she's ok bc no one really notices them. However, dd notices them and spends an enormous amount of energy trying to hide them. We thought it wise to be proactive and have a 504 in place so that she has support if she needs it. School has been very supportive thus far but I am not really sure they "get" PANDAS. To be honest I am not even really sure what to ask for. Any advice is welcomed! TY in advance! Teri

Dd6 is dx with PANDAS/Bartonella/Lyme. Around The beginning of April we started to see a real backslide - new tics/ compulsions cropped up along with the the all familiar PANDAS symptoms including not eating. We had just started to treat the Bartonella by adding Rifampin so we initially thought perhaps it was herxing. It continued to escalate and was quite bad by the end of May. Her labs in mid-late May showed a dramatic rise in Mycoplasma numbers. At the time dd was on a combo of Azithromycin, Cefnidir, & Rifampin. We contacted Dr.B because symptoms were the worst we had seen since the onset nearly 2 years ago. He switched her meds to Cipro,Cefnidir, & Rifampin to address the elevated mycoplasma. He felt the Azithromycin wasn't working anymore - she had been on Azithromycin daily since her onset. We saw an improvement in the first two weeks - the squatting tic that had developed and occurred every few seconds stopped. However the improvement seems to have stalled already. . Her head nodding/shaking tic remains. She has verbalized that her PANDAS is still bothering her. A new tic has cropped up and it sounds like she is gasping / struggling for air. She has asthma and I have repeatedly asked her if she is tight - do you need a treatment? She tells me me no - and it's from her PANDAS that's why she is doing it. It's like my jumpies (how she refers to her tics). Has anyone else's child had this breathing/ wheezing type tic or behavior? We are concerned that maybe the stall in her improvement /response to medication means that she may need a higher dose.? What do you guys think?

Hello friend, I don't know of any study ... Just speaking from our own experiences here. When our Dd then 5 had her initial onset of PANDAS symptoms our awesome Pediatrician immediately suspected PANDAS. She ran bloodwork and despite negative swabs Dd's strep titers wer sky high. She initially prescribed Azithromycin for 30 days with a schedule of on 5 days/ off 5 days bc the Azithromycin stays in your system during the off days. Dd is allergic to penicillin. We saw improvement immediately - tics went away. However as soon as the 30 days was up we saw symptoms come rushing back. We begged for renewals on the Azithromycin which she reluctantly gave us. Dd began to show symptoms during the off days. We started to give Dd abx everyday to see if it mad a difference. It did! Within 2 months of starting the abx we knew we needed to seek out a specialist and needed more aggressive treatment. Within 6 months of onset we traveled to see Dr. B. he put Dd on Azithromycin 200 mg daily which she stayed on for 14 months. He told us it was not good have her on and off as the infection rages back when they are off. She is now on a combo of Cefnidir / Cipro/Rifampin daily as we are also dealing with mycoplasma,Lyme, & Bartonella infections in addition to strep. So I guess what I am saying is be aware that most Pediatricians are going to treat cautiously and may not have the expertise to address PANDAS. Hope this information is helpful! Good luck! Teri

Saying some prayers for you and your son! Hope all goes smoothly!,,

My Dd6 is on - Cipro -250mg 2x day, Cefnidir -250mg-1x per day , Rifampin 150mg -1x per day, & Lamisil -125mg. We give her 1 packet of kids Florastor -and add another if her stomach hurts. Dd was on Azithromycin 200mg daily since onset in Sept. 2011. She has recently had a big flair and her Myco Igg #s jumped up 400+ - so Dr. B had us add back in Cipro & drop Azithromycin. We are treating for Bart/Lyme/Pandas. Dr.J originally prescribed Rifampin 150mg 2x per day for Dd who is a petite 6 .5 year old at 40lbs. She couldn't tolerate that dosage - and she typically has an iron gut. She had immediate diarrhea after 1st day on 2 x Rifampin. As per Dr. J we went down to 1 dose and changed our Probiotic from Kids Primadopholous chewables to Florastor. That helped and she can tolerate the Rifampin @ 150 mg .... But she is complaining of stomach aches a lot - not sure what exactly is causing that. My advice ... Make sure you some good quality Probiotics! Good luck!

Thx for your reply Mommybee! Dr.B is great we have been seeing him since March 2012. My Dd's blood work was run down here in PA - we live in NJ but our closest Labcorp is in PA. We have run her labs down here because it is easier as she is having them done every 4-6 weeks so Dr.B can keep an eye on her liver function. She has not been sick lately - some recent asthma & allergy flares but not sick. Her strep titres are still slowly coming down from her initial onset in Sept. of 2011. In April her myco Igg was slightly elevated but it has jumped 400 + points in the last 5 weeks.? As for the treatment plan Dd is allergic to amoxicillin and Bactrim. She was on a combo of Azithromycin & Cipro for about 7 months. Dr. B switched the Cipro to Cefnidir and Dr.J added Rifampin in March. With regards to my treatment, I tested positive to Strep (800) and my Myco was also above normal. I also tested positive a year ago for strep (400) and took 21 days of Amoxicillin. PA at Dr. B's office said that I needed something stronger than Amoxicillin and to take it for longer - 30 days. They mail me the bloodwork results and then I have to take it my PCP and convince them to treat. My PCP selected Keflex because it is stronger than Amoxicillin. Dd has never had her Vit. D levels checked so that is new for me. We live in central NJ and have not experienced the snowy weather this winter. I think Dd only donned her snow suit once this year . Glad to hear the supplement is easy to get into her! I will check that out. I did wonder if The low Vit. D level is related to Lyme.? What have you been prescribed for high titres? Last year I couldn't tolerate Augmenting which is why the Dr. switched to Amoxicillin. Thanks again for your feed back and good thoughts!

Thx for your reply pr40! I realize that Igg means past infection but I am wondering why It would jump so drastically since last month - over 400+. Not sure about methylation .... As far as sensitivities go - Dd is adopted but she already has food allergies (tree nut , peanut among other things). Not sure what is going on but waiting until 6/12 is going to be tough!

So far we have paid OOP fo Dr.J -$900, Dr.Elia - $700+, and IGenex labs-$900+. Our PANDAS Dr. Is covered by insurance thus far. We had some reimbursement for the IGenex labs . If we need to go the IVig route - praying we can it covered if needed. Otherwise we can't afford it!

Hello folks, Dd 6 has really been struggling the past 8 weeks or so. We have been running labs every 4-6 weeks. She has PANDAS/LYME/Bartonella and takes : Azithromycin, Cefnidir, Rifampin, and generic Lamisil daily along with Florastor. Over the past 8 weeks we have seen tics return, hyperactivity return in the evenings, OCD has returned. Over the past week she has begun to not eat and is able to tell us that her Pandas is bothering her. She says "her jumpies are back (tics) and her brain is telling her "don't eat". She is also now tapping herself and is just so restless - cannot be still. I would say this almost the worst it has been since her initial onset. Her labs just came back and her Myco Igg has gone from 138 to 598. AntiDnase B strep is elevated -89 and ASO titres are finally normal - 96.6. Candida #s are all normal but Vitamin D levels are low. My ASO and Myco titres came up high. So I am just starting 30 days of Keflex. We thought she was flaring because of my strep numbers or perhaps a big yeast issue! Neither of these seem to be the issue. My question is how could her Myco Igg number elevat so much??? What does low Vitamin D levels indicate? I have not been giving Vitamins because frankly it is all we can do to get her to take her meds! We don't see Dr. B until June 12th and things seem to be going downhill fast? HELP! Thought getting on Abx for myself would help things but now I don't know!? So frustrated ..... We've been at this for 20 months now and thought we would see more forward progress. Seems like we are just trying to hold back the tide. Any feedback would be appreciated! Teri