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It sounds like you are on the right track in seeking out more information for him. You are his best advocate and should follow your gut instinct. Has he been tested for Lyme? Our daughter had many similar things going on and then was ill with "flu" in June 09...never really the same since. We have been treating her for Lyme for 4 months and her overall health is much better and she is functioning well less "sensory" stuff, less anxiety and range, and no more verbal tics. Now, when exposed to strep, her symptoms are less and shorter in duration. I believe that she was intially exposed to Lyme years ago and the illness that June was the last straw on her immune system. In our case, she had 2 negative Western Blots but positive when tested by IGenex lab. I am not sure if Sick Children's Hospital will send out the blood for you but wouldn't hurt to ask. Good luck!

You could start with the IgM and IgG Western Blot (box 188 and 189 on page 2 of the form) for $200. However, if this comes back showing exposure, further testing for co infections would be indicated and interpetation from a Lyme literate doctor very important. Good luck!

Recently, my husband had his blood drawn at Clinical Lab Parteners in CT and they sent it out to Igenex with a referral from his GP. He only had the Western Blot ($200) and our insurance covered 80%. When his testing came back positive for Lyme, he then consulted with a Lyme Literate MD who is further testing him for co infections. It is great that you are getting the Igenex testing! Good Luck! Joanne

My daughter was not on abx for the first test; on Augmentin 2 months at the time of the second test; and on Augmentin 6 months at the time of the third test thru IGENEX. So, you can test while on abx. I think it is most important that all bands are properly evaluated and that suspected co infections are ruled in or out. If you are thinking that a tick born bacteria is at work here in addition to strep, perhaps seeing a Lyme literate doctor will help to direct how to further test and treat. Good Luck. Joanne

Hi, my daughter had band 41 on standard Western Blot on 2 different tests but was considered negative for Lyme according to CDC guidelines. We were not seeing improvement in her symptoms on Augmentin so we consulted with a LLMD. My Lyme doctor felt in isolation, band 41 is not of huge concern if all other bands have been properly tested and that coinfections have been ruled out. In our case, that was not done until we saw him. He has years of pediatic lyme care experience and feels that the co infection Bartonella can be the cause of neuropsychiatric symptoms. The diagnosis of Lyme is a clinical one and treatment is chosen based on the individual need and response. So, I am not sure if there is a "best" antibiotic. We were told treatment will be for at least 4 months and should continue for 2 months beyond symptom resolution to ensure the bacteria has been treated beyond it's life cycle. Our daughter has been on zythromax, bactrim, and tindamax for 3 months with good results. I was told that her program addresses active Lyme, Bartonella, and any bacteria that has developed a biofilm or changed into a dormant cyst form. The goal is to treat long enought to get to all the bacteria and minimize the risk of relapse once treatment is completed. Hope this info helps. Joanne So are you actually going after band 41......Scott doesn't seem to think it is of concern either...but maybe it is a marker for some other bacteria,,,i guess as dr T indicated???? is the zith, bactrim and tindamax for lymes? is it just for some other infectiona that 41 might be indicating? how long before you started to see results??/ 1 month...just now??? i'm asking as my head is getting cloudy and i really cant' anything straight anymore......is it maybe just and inflammation marker... .it that what TLR5 marks or is tlr5 a marker for a food bacteria... ds also has dybosis, from what i can gather,,,all his bacteriaa, funguses and yeasts seem off??? are my questions making sense??/ or Sorry if my post was not clear. Band 41 was the only one that was present when the 10 bands were tested per the CDC Western Blot standards. When we redid the Western Blot with IGENEX per our LLMD, we found numerous other bands present which were indicative of Lyme exposure(18, 31, 34, 41, 93). The coinfection Bartonella was also found. So, the Bactrim is to treat the Bartonella and the Zythromax and Tindamax are to treat the Lyme. The first 3 weeks of treatment were challenging but then at about the 1 month mark, we started to see more improvements. She is not 100% yet but doing so much betther than before we started the program in March. Hope this helps to clarify things. Joanne

Hi, my daughter had band 41 on standard Western Blot on 2 different tests but was considered negative for Lyme according to CDC guidelines. We were not seeing improvement in her symptoms on Augmentin so we consulted with a LLMD. My Lyme doctor felt in isolation, band 41 is not of huge concern if all other bands have been properly tested and that coinfections have been ruled out. In our case, that was not done until we saw him. He has years of pediatic lyme care experience and feels that the co infection Bartonella can be the cause of neuropsychiatric symptoms. The diagnosis of Lyme is a clinical one and treatment is chosen based on the individual need and response. So, I am not sure if there is a "best" antibiotic. We were told treatment will be for at least 4 months and should continue for 2 months beyond symptom resolution to ensure the bacteria has been treated beyond it's life cycle. Our daughter has been on zythromax, bactrim, and tindamax for 3 months with good results. I was told that her program addresses active Lyme, Bartonella, and any bacteria that has developed a biofilm or changed into a dormant cyst form. The goal is to treat long enought to get to all the bacteria and minimize the risk of relapse once treatment is completed. Hope this info helps. Joanne

Hi. I would like to add to LLM's suggestion to make sure you have as much information about the possible bacterias that are triggering your daughter's symptoms. It is critical for her healing. My daughter (9) also had repeated illness with strep but also has food allergies. Treating these issues with diet and full dose Augmentin for 6 months helped some with her compulsions, anxiety, fatique and general behavior, but the biggest change we have seen was when we started treating her for Lyme/Bartonella 3 months ago. Addressing the combination of the above has made a big difference. According to our Lyme doctor, the co infection Bartonella can trigger neuropsychiatric symptoms and needs to be addressed (we currently are doing this with Zythromax, Bactrim and pulsed Tindamax). We have not ruled out the need for IVIG in the future but are giving this a try first...we are seeing results. This can be such a confusing process but keep digging to get the answers you need. We cycled thru seeing 8 different doctors, had an endoscopy, tonsilectomy, and numerous tests (blood...including 2 negative standard Western Bolts, CT scan, EEG, echocardiogram) before getting proper testing thru IGENEX and treatment specific for Lyme/Bartonella. Hang in there and follow your gut...you will find a way to help you daughter! Good luck. Joanne

Yes, my 9 yr old daughter was dx with PANDAS in Fall 09 and dx with Lyme/Bartonella in March 2010. We are 2 months into Lyme treatment and seeing progress...but still not 100%.

Hi, first let me say how sorry I am to hear about your son's backward turn in his recovery. It is so exhausting and the idea of adding Lyme treatment to his care can seem daunting. With that said, if changing his treatment plan helps his body rid itself a bacteria that is so harmful to him....it is really worth a try. I had to face the same difficult decisions 3 months ago and it is not an easy choice. The world of Lyme treatment is still new to me but I am learning quick. My dd(9) was sick June 09 and basically was not the same since. There was no tick or bite or rash... we thought it was H1N1. We were given the PANDAS diagnosis in Oct 09 and Lyme/Bartonella diagnosis in March 2010. Let me say that despite 6 months of full dose Augmentin, T&A surgery, and a gluten free diet, my daughter was ok but really only functioning at 80-90%. Now, we are 3 months into Lyme treatment and she is doing even better. Intially, she was a bit worse in mood, behavior and energy level but now she is between 90-100% on Zythromax, Bactrim (for the Bartonella), and Tindamax (weekends only). We were told that the coinfection, Bartonella, can mimic PANDAS. Also, we were told that we will need to treat for at least 2 months beyond symptom resolution. But, it is unknown long it would take for her symptoms to resolve completely. So, in response to your questions: 1) Yes, this could be Lyme/Bartonella at work on his system and therefore I would try treatment. Lyme is mostly a clinical diagnosis and the blood tests are a snap shot in time showing his immune response in that moment. His IgG shows Lyme exposure at some point and should be addressed. Perhaps by doing this, future IVIG would be more beneficial as his system won't be attacked by the Lyme/Bartonella. But, I would suggest treating with an ILADS doctor who is current on the best combinations of antibiotics and can help clinically monitor response to treatment. The tracking of symptoms is really important as it helps direct clinical decision making and you want to be sure you are working with a knowledgable Lyme doctor. 2) How to survive??? I have found communicating with other parents treating for Lyme a huge help! Some of the people I have been in contact with here on this board and in the local Lyme support group in my town have provided a wealth of information and encouragement. I am cautiously optomistic about my daughter's treatment but fearful about when we start to wean her off the abx. I try to take things one day at a time and try to appreciate even the smallest of steps in the right direction. For me the pay off happened recently when my daughter was getting ready to leave for school (riding by bike with her friends....WOW!) and she said "remember when I could barely get to school....glad I don't feel that way now". She left and I had tears in my eyes. So, hang in there and follow your gut instincts about what you think may help. If you have more specific questions, please PM me. Good luck. Joanne

You might want to read this - http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077 "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." Hi, It is great that you found an ILADS doctor in your state! The symptoms you are describing in your son are so similar to what we saw in our daughter (9) who had 2 "negaitve" Western Blots (both with band 41 only) before we had her retested for all bands of Lyme and co-infections with a Lyme literate doctor. She did have many other bands present along with a co-infection Bartonella. We were told the Bartonella can cause many neuropsyche symptoms. We are almost 2 months into treatment on Zythromax, Bactrim, and Tindamax and seeing great improvements. She is not symptom free but has some great days....we live one day at a time around here. I would follow up with the Lyme doctor for both kids just to be sure. Good luck!!!! Joanne

Hi I would encourage you to follow up on anything that is not sitting right with you....ruling out all tick born bacterias is so critical to getting our kids healthy. Thanks to LymeMom there is good information in previous threads on this post. Perhaps you can start by asking to have the IGENEX IgM and IgG Western Blot test done(188 and 189 for about $200). This will test for the Lyme bands left out of the CDC standard Western Blot testing. You can download the test script off the IGENEX web site. However, follow up with a Lyme literate doctor is really important to make sure all coinfections are addressed and that the proper meds are used for the proper duration. For us, this has made a big difference thus far. Good luck. Joanne

Hi Madhu, Please note I am not a doctor and I am very new at looking at the Lyme literature but from what I have learned, Lyme is a clinical diagnosis and blood work can be very confusing. With that said, an "indeterminate" result means something is there but the immune response was not significant enough to move it to a stronger positive result category....plus I believe the positive IFA is indicative of Borrelia. The co-infections are an important part of the overall treatment for Lyme so I would encourage you to DEFINITLY further investigate it. I am sure a Lyme Literate doctor could help you better determine the best way to proceed. Keep up your hard work...you will get the answers you need! Best, Joanne

I do not post often but I want to share our 9 year old daughter's story and our new information. She was dx with PANDAS in Sept 09 and has been on full dose Augmentin ever since. In Jan 10 she had T&A surgery and has been functioning at about 90% with abx. However, anytime we lower the abx dosing or try to stop, symptoms return within days. Her abx dependence has baffeled us until now.... First, I am forever grateful for the information I obtain from this forum because the more I read about Lyme and co infections here, I began to wonder what else might be going on in my child's system. Despite the 2 "negative" Western Blots (only band 41 present) from our local lab, we decided to consult with a lyme literate doctor and retest. We now know she has numerous positive bands for Lyme from IGENX and the co infection Bartonella. Our Lyme doctor has informed us that this particular co-infection, Bartonella, can mimic the PANDAS symptoms she has been experiencing. So, she is now on daily zythromax, bactrim, and once a week Tindamax. We have stopped the Augmentin. The above treatment is to get to the co-infection, the possible cyst and intracellular bacteria. Right now, we plan to do this for at least 4 months to make sure she is treated throughout the various life cycles of the bacteria...we will reassess and decide what is next at that time. It has been 3 weeks and she has had some good and bad days but nothing terrible...thankfully. She seems to be tolerating this program pretty well. I am hopeful that if we rid her system of Lyme/Bartonella, she can really heal. So, here I sit with such mixed emotions...thankful my daughter is doing ok today, hopeful she will heal, and angry that the guidelines for testing and treating Lyme are not clear enough to help all those that need it. Her positive band 41 on standard Western Blot bothered me from the start. And while this band alone is not significant, the ones that remained untested are. But, when the CDC has chosen only a few bands to test and these guidelines tell us it is a "negative" test for Lyme, what else were we to think? It deeply concerns me to think of how many people, like us, are suffering and don't realize that they don't have all the information because the standard testing doesn't assess it properly. I know that every parent with a child suffering from PANDAS is burdened mentally, emotionally and financially. The medical costs between all the doctors, medicines and tests can be overwhelming. But, based on our experience, I would encouarge a full Lyme and co infection workup that goes beyond the CDC's current, inadequate standard testing...if possible with a doctor who is Lyme literate. Thanks for letting me share and I hope we all can find the right path to have every one of our kids healed. My best to all... Joanne

Hi Kari, I am just wondering how long this has been going on and if it relates to a new exaccerbation. My daughter started biting nails/fingers at age 7 (2 years prior to dx of PANDAS). We tried everything with no result. It was so bad that I was concerned she would permenantly damage the nail beds. However, she has recently stopped since T&A surgery and high dose Augmentin early January. We now make sure nails are kept neat so nothing irritates her enough to start again. Is your son still on full dose abx or prophalxis? Perhaps upping the dose or changing abx may bring some relief. Good luck. Joanne

FYI....I am currently reading Dr. Amen's book "Magnificent Mind At Any Age" and it does have some interesting info about the brain and behavior with suggestions about ways to help improve brain function. The web site also has some good "brain healthy" food and supplement suggestions. However, I did call the east coast office and they told me that they do not scan/treat PANDAS as they see it as a physical issue not a psychological one???(In my mind...it is hard to seperate out the two) They did say they could help with coping strategies for the OCD if needed. Anyway, thanks for sharing the link.

My 9yr old daughter is 5 weeks post op and also still on abx (Augmentin). She has improved a great deal(75-80%) but some OCD/anxiety issues continue.

Happy Birthday and thanks for sharing these helpful tips! I have a question about the thyroid work up. At what age did you get help from the endocrinologist? I am just wondering if this is some thing for pre or post puberty? Do you have any names of docs familiar with PANDAS as I don't think I have seen any listed on the posts about doctors that people have found helpful with this disorder. Thanks for the info.

Faith, According to the 3 PANDAS docs we have consulted with, our child psychiatrist, and our pedi...for our daughter, the dx of PANDAS is unfortunately more than speculation. We wrestled with the decision to do the surgery for fear of another large exaccerbation post op. Augmentin helped her so much in the past that it just made sense to me to advocate for the pre, intra and post abx. The way it worked out for us, our pedi gave us the 10 day pre op abx, ENT did the intra op and a 7 day course post op, and then we filled a 30 day script thru our PANDAS doctor. While the ENT listened to our concerns as it related to PANDAS, he was clear that it was not his specialty and he would not perscribe any more abx than the 7 day post op script. Hope that is more clear and helpful. IMO, it is important to follow your gut feeling...if your son does well on abx, then go for it and keep asking for what you think will benefit his healing process. Joanne

My daughter is 64 pounds but 4'11. She has a tall, thin frame for age but between 25-50% for age in wieght. She is still picky about what she eats but is definitly sleeping better now. I would definitly push for intra operative abx and see if they will do culture and sensitivity on the tonsil tissue. Also, prepare for lots of liquids...the more they drink the better. Good luck.

I feel this is one of the hardest parts of having a child with PANDAS. My husband and I still struggle with knowing what to do in the various situations (most of my daughters(9) behaviors show up at home, not school). One thing I do work on is not engaging too much in the rage or tantrums...to me it is like trying to talk to an alcoholic about their drinking while they're drunk. I go to the place of making sure no one gets injured in the moment and try to reach her in a teachable moment later. One pattern I see with my daughter is that if her mood turns to rage, she usually has some virus or infection brewing. For ex, when she was on full dose zythromax for a month and doing ok, she changed and her behavior tanked. She had developed a new ear infection....but never c/o ear pain....I knew to have her checked based on the behavior. Also, post T&A surgery, when her mood changed we increased her Augmentin dose with improvments seen in 2 days. So, just make sure there are no new things that can be treated in his system. Finally, I too like the book the Explosive Child by Ross Greene. Maybe there are some tips you can take from there. Best wishes as this is not an easy path for any of us. Joanne

Hi All I am still getting the hang of posting on this board so I decided to start as a new topic to share some things we learned after having my daughters tonsils removed 4 weeks ago. My daughter (9) was dx's with PANDAS in the fall 2009 but has cycled thru various bouts of seperation anxiety, compulsive behaviors, and moods since age 5...never any tics. We did not think to relate flare ups in behavior with recent illness until the most, severe recent episode. She has had frequent ear infections, sore throats and colds during those years. She has food and environmental allergies but is not consistently on meds for it. Her tonsils had reamained large since about age 7 and, per orthodontic films, her adenoids were also large. While her ASO titer was 219 she has never had a positive strep throat culture (perhaps the strep was hiding behind her large tonsils...I don't know). We decided to do T & A surgery 4 weeks ago. It was medically indicated due to the size but we hoped it might help her body toward healing from a PANDAS perspective too. I prepared for the worst (planned for help for me, shopped for favorite liquids and soft foods) but am happy to report it was not as bad as I thought it would be. She was "cranky" coming out of surgery and did have some difficult days around day 5-7 . Perhaps her self-imposed, rigid compliance with the doctors orders to keep up with liquids and tylenol as needed helped all of us get thru those first post op days. Anyway, since then, her mood, behavior and compulsions seem to be slowly improving. She is back at school and her teacher reports she seems to be generally doing well. She does still have anxiety and some compulsions that haven't budged (hence my last post)...but I think she is making some progress toward healing. We did have to REALLY advocate for the following: 1-Full dose Augmentin pre, INTRA, and post operatively. This was not my ENT's normal protocol but he did agree to do it given her history. 2- Culture and Sensitivity testing of the tonsil tissue. Again, not protocol for our ENT. Usually, just pathology looks at the tissue structure. The ENT told us the tonsils looked like large rotten apples (gross)....pathology report used the medical term "hypertrophic". I did have to push to get the cultures done and it came back "Rare Gram Positive Cocci" but unfortunalty the specimin was disgarded before they did further serotyping on the tissue. We did learn the bacteria was resistent to ampicillin, beta lactamase positive, and sensitive to the other abx. The higher dose Augmentin seems to helping her for now so we will continue this for at least a month. We are to meet with Dr B in a few weeks to determine what steps to take next. I hope our "relatively" smooth T & A surgery experience may help those of you considering doing it in the future. Joanne

Thanks for the detailed contact info. I will take all the good luck we can get at this point!

Thanks for the detailed contact info. I will take all the good luck we can get at this point!

Thanks for this info. I think the books may be very helpful to us. As far as how my daughter sees things....she does not recall much of her behavior during her exaccerbation this summer and fall, especially the rage/moods. She does acknowledge she is able to do more now than a few months ago especially at school. She does not seem bothered by the residual OCD/anxiety behaviors but it does make life for us here at home a challenge...especially at bedtime and getting places on time. Hence, my quest to find ways to parent and guide her as she continues to heal.

Hi All, A big thanks to all of you for sharing your stories. This is my first post but I have been reading and learning from all of you for months. A very brief overview is that our daughter (9) was sick in June 2009 with what we thought was H1N1. She spiraled down over the summer and by Sept, after numerous diagonositic tests, all negative, we were sitting in the psyciatrists office. Thankfully, he introduced us to the term PANDAS and we started down this path before too much time had past. She started on Augmentin (600 2x/day) and improved 80%. We consulted with Dr K, Dr T, and Dr B and all aggreed, based on her hx and clinical findings, she fits the criteria for this disorder. We did try a month of zythromax (250 1x/day) but found it not as helpful as Augmentin. In Jan. 2010, she had T & A surgery with full dose Augmentin pre, intra, and post operatively. We did up the dose to (900 2x/day) post op, which she is still on...thankfully no yeast problems at this time. She has been doing so much better and we are watching much of her compulsions disappear. Her rage and behavior continues to improve as well. We are waiting to see how she does before considering IVIG. At this time, we are looking for a skilled family therapist to help us cope with the ups and downs of this disorder, teach us all stratgies on how to manage the residual OCD/anxiety, and maybe even help us in the future as we ride the wave of PANDAS. We live in CT and are wondering if any of you have found any such practictioner? It may be wishful thinking that such a person exists but it would be a great help to us if they did. Thanks for all the shared info. Joanne