mommybee

@Kmacdonald34 I think you misunderstood what I said. I didn't mean that there are strains of strep that aren't sensitive to any antibiotic. My comment was only about azithromycin which is commonly prescribed for prophylaxis in other parts of the country

Yes, it was awful, Joybop. But thankfully that was a while a go. Live and learn. My son is fine now. We now know not to count on azithromycin anymore. I'm sure your son will be tested for strep and everything else. We never used the clinic, but I'm sure they're thorough.

Yes, Joybop. He got strep while on Azrithromycin. Apparently there are strains of group A strep that aren't sensitive to Azrithromycin in some parts of the country (New England and Chicago, not sure where else). My understanding is that Keflex is not 100% effective as a prophylactic either. If it were me, I'd have my child's throat cultured.

We love the doctors at MGH too. They have brought my child back to 100% more than once. By this I mean no symptoms at all. However, we've been through this enough times to know that cured and in remission are not the same. When my child gets strep, the symptoms come back. This is why we've been doing prophylactic antibiotics since the last infection.

@Joybop You are so right to wait until you get the anxiety under control before embarking on CBT. We use MGH too and had to learn that ERP is contraindicated the hard way. So if anyone at the hospital tells you differently, refer them to Dr. Henin at the child CBT program. She can certainly enlighten them about the reasons why this is the case. In a nutshell, the reason why the therapy works is that systematic exposures usually desensitise the patient. He or she learns through repeated systematic exposures that the feared response won't be as bad as it is believed to be. The problem is that when anxiety is as extreme as is in PANDAS, exposures cause full blown panic reactions that reinforce the fear rather than extinguishing it. This is not just theory. There is plenty of peer reviewed research on the subject. I'm certain that Dr. Henin would be happy to share how this works with her medical colleagues if asked. For everyone else, MGH is the best! They made my kid better.

This is so odd, Mary. Dr. Swedo told me not to expect my son to outgrow PANDAS. He is 19 and had his last recurrence at 18 after a confirmed strep infection. He is currently in remission and completely healthy, but, at her suggestion, he is on prophylactic antibiotics because he is a residential college student living in a dorm. Dr. Swedo advised us to keep our son on prophylaxis as long as he is living in a dorm or working with children. Just last month, she said that in his case, it might be advisable for him to resume prophylactic antibiotics when he has has children, just as he would if he had That's so odd, Mary. Dr. Swedo told me not to expect my son to outgrow PANDAS. He is 19 and had his last recurrence at 18 after a confirmed strep infection. He is currently in remission and completely healthy, but, at her suggestion, he is on prophylactic antibiotics because he is a residential college student living in a dorm. Dr. Swedo advised us to keep our son on prophylaxis as long as he is living in a dorm or working with children. Just last month, she said that in his case, it might be advisable for him to resume prophylactic antibiotics when he has has children, just as he would if he had rheumatic fever.

Below are some excellent Lyme practices in the D.C. All of these doctors are ILADS trained. The Jemsek Specialty Clinic http://www.jemsekspecialty.com/aboutus.php Dr. Jemsek may not be taking new patients, but there are others in the practice who are. Internal Medicine of Northern Virginia, P.L.L.C., Reston, VA https://secure.intmednova.com/portal/default.aspx Dr. Shor is the president elect of ILADS and supposed to be a terrific doctor. Here's a recent video. http://www.ilads.org/media/boston/videos/videos_shor.php Optimal Health Physicians, Rockville, MD http://www.ohpmd.com/welcome/whoweare.html I've heard great things about Dr. Fishman and believe his practice is open at this time.

We saw good response within 48 hours of taking Augmentin the last time. However, my son was also prescribed an anti-inflammatory medication so it's not entirely clear which (or both) caused the improvement. We were also dealing with a current strep infection this time.

I attended on Saturday and distinctly remember being told that there was no need to take notes because the presentations would be taped. I don't, however, remember hearing that the presentations would be put on the web. I wonder whether the intention was to provide those in the healthcare field with some kind of password protected link. My impression was that Dr. Cooperstock was on the same page as the others. The only distinction is that he is a practitioner and all the others, even those who treat patients, are involved in scholarly research. I also distinctly recall his reference to PANS. He even went so far as to share that he prescribes Theraflu preventatively when household members of his patients get the flu. I also recall Dr. Murphy specifically saying that we really don't know why antibiotics have therapeutic value even when strep is not involved. While she suggested that the drugs may have immune modulating properties, she also mentioned that some classes of antibiotics have anti-inflammatory properties as well. Dr. Swedo focused on the new streamlined diagnostic criteria of PANDAS and PANS. I remember her suggesting that children remain on antibiotics for a year post-infection, but she wasn't clear about dosing levels. My suspicion based on several personal conversations with over the years is that she was referring to prophylaxis. She definitely advises doctors to use the narrowest spectrum antibiotic possible and to drop the dose to a prophylactic level as soon as symptoms abate. I thought the presentations were informative and was not at all bothered by the questions parents asked during the Q&A portion. There appeared to be a fair amount of parents there who were also healthcare professionals. I sat between a nurse and a physician who were both mothers of children whose children were in remission. I was also pleased that the Saturday portion of the conference, at least, was considerably less contentious the one I attended in Rhode Island a couple of years ago. I was not alone in this view. If folks have specific questions about the presentations, let me know and I'll do my best to answer them.

Steroids are contra indicated when a person has Lyme. They diminish immune function and make symptoms worse. Lyme treatment can take quite a while. If you are seeing Dr. Bock, you are in good hands. He is a LLMD. If it were me, I would follow his protocol. Dr. Trifiletti is not Lyme literate.

Beautifully said, Surfmom. For all of you just beginning this journey, kids do get better. Mine did. Completely, 100% better. He's now college, has lots of friends, is the leader of student groups, earns high grades-- the works. This same kid was so anxious just a few years ago that he couldn't go to high school full time. All I can add in the way of advice (because Sufmom has covered it all) is try not to buy any snake oil. There are doctors out there who are capitalizing on parent desperation. To the extent you possibly can, see doctors who have hospital affiliations, admitting privileges at teaching hospitals and a network of other practitioners with whom they can collaborate. The doctors who belong to the PANDAS Physician's Network are the the best of the best. The are also the most current about advances in treatment. Use them, if only for referrals. https://www.pandasppn.org/ Also, this is apparently not an illness that one outgrows. We thought our child was healed and we sent him off to college drug free. It took only three weeks for him to catch strep and another three until he woke up one morning a neurological mess. Not only was he in a state of complete panic, he couldn't think straight or read. Thankfully, antibiotics turned it this around quickly (within 48 hours) and he was able to continue with his studies. I tell you this story because prophylactic antibiotic treatment is necessary for some children. Per Susan Swedo, my so will remain on them until he finishes school. When a child presents in accordance with the Rheumatic Fever model, the treatment protocols are identical. And just as people don't outgrow Rheumatic Fever, they don't outgrow PANDAS. Strep can induce an encephalopic at any age.

The norms for different labs vary so without knowing which lab was used, it's hard to answer the question about titers. If the blood was run by the tech in Dr. Bouboulis's office, it would have been sent out to Quest by Clinical Laboratory Partners. Quest uses a cut off of 200 for the ASO test, making your result negative and your husband's positive. However, a single titer result isn't a reliable measure of illness because the body is designed to make antibodies to fight disease. Titers go up and down depending on exposure. Accordingly, a single high reading only indicates a recent exposure. Infectious disease doctors are trained to look at titer trending. Because strep titers take about 6 weeks to peak and even longer to decline, another sample would need to be drawn two months from the date of the last one in order to determine whether the number of antibodies are falling or rising. Only if they remained steady or went up, would it be reasonable to assume a current infection. Throat cultures which don't rely on counting antibodies are a far more reliable measure of current infection. Because I know that Dr. Bouboulis doesn't typically do throat swabs in the office, I would suggest that your husband go elsewhere for this because it is the fastest and most accurate way to determine whether he is a strep carrier. The rapid strep test has a high false negative rate, so he should either ask for the traditional send out or one of newer tests (Illumigene makes both a PCR and a molecular assay test). With regard to Mycoplasma Pneumoniae, IgG only indicates that a person has had the illness. High IgG titers indicate immunity. You and your husband do not presently have mycoplasma pneumoniae.

Dr. Swedo's information doesn't come from parent surveys. She followed the initial cohort and those children got better, most with antibiotic therapy alone. However, a small number needed immune modulating therapy, CBT and/or psychotropic medication to maintain full functioning. I spoke to her yesterday and asked about whether my child who is now in remission would outgrow the illness and she said that he would not. Because he so closely fits the Rheumatic Fever model, she said that we could assume that future strep infections could trigger an encephalopathic reaction. She suggested that we follow the Rheumatic Fever protocol which is prophylaxis until age 21 and villigelence there after. She said prophylaxis is necessary for people who go into fields where they work with children (medicine, teaching, etc.) and for parents of young children. Also of interest from the medical conference on PANDAS was the advice from Dr. Cooperstock to use prophylaxis for PANS. He said that he prescribes tamiflu to his PANS patients when a member of the household gets the flu.

CBT the gold standard treatment for mild to moderate OCD, with or without medication. As Nancy indicated, it's hard work to force yourself to face your fears. But if you can do this, little by little you will extinguish them. Chemar is also right that finding a good therapist who won't be domineering is also important. The one thing I would caution about is to take it slowly. If the child experiences too much anxiety as part of the exposures, his or her fears will be reinforced rather than extinguished. Not all therapists understand that for some children, anxiety can spike from very quickly resulting in a panic reaction that is destructive, if not abusive.

You have a great attitude and made me smile. Thanks. Speaking of pets, service animals (or pets that assume that role) can be very calming to anxious children. One of our dogs served this role beautifully and basically didn't leave our boy's side when he was at his worst. I'll bet this isn't uncommon.

Thanks everyone. As an update, it turned out to be just mono. When the virus passed, the neuropsych symptoms remitted. I'm thinking that the Lyme treatment my son had was effective.

I suspect that the 2% relapse rate may reflect not only the strict diagnostic criteria used for selecting the PANDAS cohort, but also the use of prophylaxis. Just the same, PANDAS doesn't wax and wane. It remits and relapses. This really is an important distinction for diagnostic purposes.

A worsening of symptoms with steroids and Augmentin screams of Lyme. Steroids depress immune response making Lyme symptoms worse. Augmentin could cause a herx response. My advice was to seek out a LLMD.

My understanding is that PANS is a misfired immune response so all cases are autoimmune in nature. It's also important to make the distinction between the words "relapse" and reinfection. Susan Swedo talks about the illness as one that relapses and remits, rather than one that waxes and wanes (as is typically the case with OCD and Tourettes when kids are stressed). When reinfected, a child in the PANS cohort can experience symptoms again. This has certainly been our experience. When healthy (or uninfected), my child has no PANDAS symptoms. NO OCD. NO tics. No separation anxiety. No behavioral regression. But when he catches strep, his symptoms return in spades-- and typically overnight. He will wake up in the morning a complete basket case after being perfectly fine for months, or even years. The last time this happened, we had the benefit of experience and got him on antibiotics right away. We turned the worst of the symptoms around quickly (in about 48 hours). However, executive function, short term memory deficits and slowed processing took about four months to resolve completely. Because of the recurring pattern, we made the decision to treat prophylactically. According to the research, the use of prophylactic antibiotics prevents reinfection in almost all cases. Here's the link to a recent talk Dr. Swedo gave on the subject for those who are confused.

We are among the lucky ones. When better, my son returns to baseline. He is completely neurotypical-- unusually well behaved, high achieving, and popular. Our story is textbook and encouraging. My son had three distinct PANDAS episodes. The first, at age 5, was such a flash in the pan that it was never treated. After a likely strep infection (fever and sore throat followed by a rash), my son developed germaphobia OCD and separation anxiety. Nothing serious. He was still able to go to school, but said he missed me during the day and washed his hands so often that they became very chapped. The behavior came out of nowhere and then disappeared completely a few months later with no treatment. I distinctly remember him telling me that he was no longer afraid of germs. Just like that. The second episode occurred nine years later after a cellulitis infection. Contamination OCD and extreme panic attacks that lasted for hours were the hallmark symptoms, although accompanying symptoms included severe regression, short term memory problems, headaches, reduced small motor coordination and fatigue. Psychotropic medications and CBT were tried and abandoned because they didn't work. Once diagnosed with PANDAS, appropriate antibiotics and inflammatory medications were prescribed and symptoms remitted quickly leaving behind impaired executive function and slowed processing speed. It took about six months for these to later symptoms to remit completely The third episode occurred two years later after untreated strep throat. (We thought it was a virus and the sore throat was just swollen glands.) Three weeks later he woke up anxious out of his mind. He also couldn't stop crying and felt pressure in his head. Antibiotics and anti inflammatory medications were prescribed and within 48 hours he was functional. He could once again read and no longer felt like crying. Again, executive function was compromised. For the next four months, he had significant difficulties with concentration, short term and working memory and falling asleep. But he was able to attend school and socialize with friends. Slowly these more minor symptoms remitted. He is now on prophylactic antibiotics to avoid another strep infection. In its most classic form, this illness gets better.

I'm not a speech pathologist, but the best way I can think of to explain this is to say that people process input at different rates. You can take two folks with equal vision, reading ability and general aptitude and one might be able to read (and understand) at a rate of 60 pages an hour, while the other can only read half that quickly. Given the time each needs to finish reading the material, both will be able to answer questions about what they have read with equally good results. The only difference between the two individuals would be how quickly are able to process verbal information. Auditory processing works in much the same way. Some people hear and make sense sounds faster than others. However, given appropriate processing time, most everyone can understand language. Processing speed is not something you can change, but there are things slow processors can do do to compensate. Recognition or the situation is often the first step. Armed with this information, a slow processor will be able to manage situations better. When asked an opinion, she will know to request a little think time before responding . When presented with a lot of verbal information all at once, she might ask for a summary or clarification. If comfortable, she might even ask the speaker to talk more slowly. In an academic setting slow processors understand the importance of advance preparation before attending a lecture to reduce the amount of new information that needs to be processed. One thing I should probably add is that processing unevenly is stressful if it's not managed carefully. Acknowledging, normalizing and providing strategies will probably help your daughter to compensate. Very few people have completely flat learning styles. We all have some things we're better and faster at than others and we levy our strengths to compensate for our relative weaknesses. The sooner she can be made to feel good about this, the less worrisome it will be for her. Another thing I should probably add, is that my PANDA is OK too. But throughout his life his processing speed has ebbed and flowed. In retrospect, I realize that it was probably PANDAS related. During an encephalitic episode, his executive function and processing speed drops off precipitously and the last time he had a flare-up, he couldn't read at all. Because the healing process can take months after the more obvious symptoms abate, I think many children and adolescents with PANDAS deal with these fluctuations to some extent. While certainly not as disabling as the extreme anxiety and motor tics that they live with when they are sick, this must be very confusing at a time when they are trying to figure out who they are. I hope this helps.

This is great stuff. Thanks so much for posting it.

Lyme and Bartonella treatment three years ago was extensive and prescribed by a LLMD. After treatment, all symptoms were eliminated Neither exposure was congenital and the original presentation was typical. There was a known tick bite followed by a characteristic bull's eye rash. Bartonella straie, and subsequent positive bands on the Igenex western blot confirmed the diagnosis. More recently, a two week course of doxy was prescribed immediately following a suspected tick bite in the absence of any symptoms at all. My question to y'all pertains to the unusual EBV result we just received from Quest Diagnostics. What do you make of a positive EBNA in conjunction with negative IgG and IgM? Would it be possible for Augmentin and/or Minoclycine (sp?) to have caused a false negative IgG result? TIA

RE: What abx and anti-inflammatory meds were you prescribed? Augmentin and Celebrex. Celebrex was the only medication that provided symptom relief the last time around and the combination brought down symptoms almost immediately (within 24-48 hours) this time too. All was good until a subsequent virus in early November that could have been mono were it not for the puzzling negative IgG and IgM results. Do you think either of the aforementioned medications (or the one week course of minocycline taken just prior to the blood draw) could have caused false negative results?

I wondered if I could get some input on some odd EBV results we just got back. While the VCA results were normal (IgG and IgM), the EBV nuclear AG (EBNA) was elevated. I should probably also add that ASO and ADB were also high at 300 and 500 respectively. But I understand these results. In terms of history, there was an abrupt flare up in October after a likely strep infection (fever and sore throat) 3 weeks earlier. Antibiotic and anti inflammatory treatment commenced immediately and symptoms remitted. Both medications have been continued because high anxiety and fatigue still remain, though high functioning (academic, social and emotional) has been restored. Another possible piece of the puzzle is a suspected tick bite back in August that was treated with two weeks of doxycycline. No symptoms developed prior to the likely strep infection in late September. Also, a definite case of Lyme and and Bartonella was treated three years ago and all symptoms remitted. Thanks in advance for your thoughts.