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Everything posted by mommybee

  1. The Child CBT program at MGH has just started to do intensive treatment. I couldn't recommend them more highly. http://www.massgeneral.org/psychiatry/services/child_cbt_intensive.aspx
  2. What about Jeanne Hubbuch in Watertown? http://drhubbuch.com We aren't patients, but I've heard her speak and she sounded very knowledgeable and unlikely to overprescribe. Also integrative is Nancy O'Hara in Wilton. http://ihealthnow.org/aboutus/index.html Dr. O'Hara is also member of the PANDAS Physicians Network which means that she can reach out to any of those doctors for advice.
  3. If OCD is a symptom of PANDAS, wouldn't it be possible for caudate nucleus and putamen to become enlarged in response to strep and then recede when the infection was cleared and the antibody levels returned to normal levels? The theory is that the OCD in PANDAS has a different cause than garden variety OCD (which may actually have many causes). I remember Sue Swedo talking about an early IVIG study which failed to show any curative effects. In hindsight, the researchers have come to realize that the results weren't valid because the subjects in the study weren't well screened. More recent studies clearly indicate that IVIG and plasmapheresis are only effective at treating infection driven OCD. Children who don't have infectious triggers don't show any improvement after receiving these therapies. The same is true of antibiotic therapy, despite the fact that some antibiotics have anti inflammatory properties. Garden variety OCD can't be cured completely with antibiotics and isn't impacted by anti inflammatory medicines. Also, while regular OCD may wax and wane, PANDAS OCD remits entirely only to return again if the child is reinfected.
  4. While true that the NIMH has done research using IVIG, Dr. Swedo has also stated her personal concerns about IVIG on more than one occasion. I have heard what she thinks with my very own ears at conferences I've attended. She is more comfortable with PEX than IVIG because of the risks involved with using pooled blood. Obviously, every doctor draws the line in a different place. But given the issues of using pooled blood and the lack of evidence based research to indicate that it is a effective treatment for Lyme disease, I wonder whether other treatments might be more desirable.
  5. Nitshel, is your child under the care of an ILADS trained LLMD? If not, I would think this would be the next step. I've read and heard anecdotally that IV antibioitc treatment is often quite effective. Have you discussed installing a picc line with your doctor?
  6. Prescription anti inflammatory medications were the only medication that provided symptom relief. Antibiotics seem to prevent reinfection.
  7. Mass General Hospital has an excellent PANDAS clinic. Dr. Leckman at Yale would be another excellent choice. Both practices have waiting lists but would provide the same kind of hospital resources should something go wrong that you'd get through Dr. Latimer's practice. Dr. Bouboulis in Darien, CT is another possibility. His diagnostic skills are good and he also happens to hand out IVIG like candy. However, treatment occurs in a transfusion center and you're sort of on your own if your child has a bad reaction after hours. Dr. Bouboulis also doesn't have coverage when he's away and getting through to his office even during regular business hours can be very difficult. (His office staff takes a two hour lunch break!!).
  8. Steroids depresses the immune system. When there is an underlying active infection (strep or Lyme), prednisone can cause symptoms to emerge which the immune system is ordinarily able to keep at bay.
  9. IVIG is not without risks. It uses pooled blood from lots of people and the screening of the blood isn't 100%. Susan Swedo is afraid of it and only recommends it for PANDAS/PANS patients as a last resort. She says good doctors draw the line in different places, but she is only comfortable with its use when a child's life is in danger. In the context of PANDAS/PANS this means when eating becomes so restricted that it presents serious health concerns or when a child becomes either intentionally suicidal or so reckless and impulsive (jumping out of moving cars etc.) that his or her life is in danger. I was at a conference where she explained why. Early in her training she had a child who contracted meningitis from a transfusion. This warning in conjunction the lack of evidence based research to support the use of IVIG as an effective treatment for an active Lyme infection would be enough to prevent me from using it. Well targeted pulsed antibiotic treatment in addition to diet and supplements is supposed to be the most effective treatment of Lyme disease and confections.
  10. Only strep A causes PANDAS, and only certain strains at that, put antigens on the cell wall that which are mistaken by the immune system. If your son is on 875 mg of Augmentin XR twice daily, he should be protected from contracting it. The research seems to indicate that penicillin products are most effective against this bacteria. Please let us know what your doctor says.
  11. First, it's shameful that a doctor who is prescribing a medication as strong as mepron won't talk to you on the phone about a possible side effect. You must be going out of your mind with worry. I would think the doctor could/should lose his license for this. Second, repeated high dose IVIG in the absence of a known autoimmune problem is not protocol. I would probably email Dr. Swedo at he NIMH to confirm that this treatment plan is safe for your son. She has said that she's squeamish about using the treatment at all in children whose symptoms are not severe enough to be life threatening (refusal to eat or other self harming behaviors). If it are me, before proceeding down the IVIG path, I'd want to run the Cunningham panel because it seems to be able to predict which children will benefit from autoimmune modulating therapies. The website is excellent and can be accessed here. http://ihealthnow.org While IVIG can be very helpful to some children, if the issue is an unresolved infection rather than an autoimmune deficiency, IVIG may not be curative no mater how many times you do it. I'd want as much information as possible going in. Lastly, like llm, my son was put into remission through the use of antibiotics alone. It's been a tough road with a lot of sleuth work to identify and treat a number of different concurrent infections, but my instinct to avoid IVIG was a good one. It probably wouldn't have been as effective as tackling one infection at a time until all that was left was strep which is easy to eliminate in isolation. Best of luck.
  12. Without knowing the specifics of your son's illness, it's hard to answer your question about whether keeping him out of high school is overly extreme. In large part, the answer depends on his level of anxiety along with his internal motivation to achieve academically. In home instruction is rarely as rigorous as what's offered in the classroom, and it fails to provide the social interactions that many teenagers need and enjoy. In the absence of extreme health or psychiatric limitations, it would seem that bowing out completely would not likely be in any child's best interest. With regard to what you've been offered, two hours of in home tutoring per week is the standard for general education students who experience temporary setbacks, such as a short term hospitalization or sports injury that prevent them from going to school. It is not meant to be a longterm substitute for classroom learning. If your son already has an IEP or 504 plan then he is a member of a protected class and legally entitled to a fair and appropriate public education (FAPE) at the districts expense. By law the school is obligated to provide whatever number of tutoring hours is required so he can keep up with his classmates and make "effective progress." If your son does not currently have an ed plan, the first step would be to have him be identified so that he is protected under the law. Depending on his learning needs, you would need to request an evaluation meeting in writing with either the 504 coordinator or the special education department. There may be forms that you are required to fill out for this purpose. Directions for how to go about this should be in the Student/Parent Handbook along with the federally mandated timeframes in which the process needs to unfold. Once identified as a student with special needs, you will be in a position to advocate for either a hybrid schedule (part-time schooling/part time tutoring or virtual school) or total in home instruction, depending on which you decide best meets his needs. I hope this is helpful.
  13. The mono spot test has some known issues. The first is false positive results for people who have Lupus. Because Lupus, like PANDAS results from autoimmune irregularities, I wonder about the usefulness of the test and the validity of the results. The EBV test that was sent out should be more instructive regarding mono. But it sounds like your daughter has been ill for quite some time. It it were me, I'd get a infectious disease doctor involved, particularly because of the antibiotic allergy. Let us know how it goes.
  14. Dr. Williams does prescribe IVIG for some patients. High dose and low dose. He also does monthly treatments when necessary. However, like most high level doctors, he is very conservative. IVIG isn't his go-to because of the risks involved when using pooled blood. If it were me, I'd see Dr. Williams at Mass General before Dr. Latimer because his support system at the hospital and beyond are so much better. Good luck and let us know how it goes.
  15. Given the classic PANDAS symptoms you describe and their abrupt onset, I wouldn't jump to the Lyme conclusion. If you don't feel sick, it's a stretch that you have it and passed it on to your daughter. Also, ear infections are common for little children and don't indicate immune dysfunction. More likely, your daughter just had small eustachian tubes and/or enviromental allergies. Regarding testing, I'm assuming that the strep antibody test you are waiting on is anti DNase B (ADB) because in combination with ASO, it is thought to catch most recent strep infections. If not, you should probably ask the doctor to do it because it will provide a more complete picture of what's going on in that regard. Remember it's not the strep infection that causes symptoms, it's the antibodies the body makes to fight the infection that cause the problems. This is the reason why doctors are interested in trends and aren't inclined to make a diagnosis based on a single test result, even when positive. Another common and inexpensive test that your doctor may have omitted is anti nuclear antibody (ANA) which can provide some insight into immune function. If it were me, I'd be on the phone to Stanford every day, asking if there had been any cancellations. The sooner you get her in there, the sooner you will know what's what.
  16. According to the DSM-V Body Dysmorphic Disorder is an anxiety disorder, as is OCD. Anorexia nervosa is not. http://www.theravive.com/therapedia/Body-Dysmorphic-Disorder-DSM--5-300.7-(F45.22)
  17. First, what you are describing absolutely sounds like PANDAS/PANS rather than Lyme or Bartonella, which does not typically include chloroform movements. Second, you are smart to contact the PANDAS clinic at Stanford. They are among the leaders in the field. If you can get an appointment with Dr. Jenny Frankovich (https://med.stanford.edu/profiles/jennifer-frankovich), you'll be golden. The doctors there may run the Cunningham panel, although many physicians don't use it because it's expensive and the information it yields doesn't really provide much information about treatment. Lastly, and certainly least importantly because your daughter really sounds like she may have PANDAS/PANS, my understanding is that a diathesis on SSRI medication, while uncommon, is not at all PANS specific. Good luck and let us know how it goes at Stanford.
  18. PANDAS came to my mind too. It's possible that the OCD, tics, ADHD and dilated pupils are related and all symptoms of an infection and that, once cured, could result in a reduction or elimination of the issues you describe. Before increasing stimulant medication, which is known to aggravate movement disorders, I would strongly urge you to have your son tested for strep, especially if his issues came on abruptly following a febrile illness. If nothing else, you owe it to your son to read up on PANDAS/PANS. I've provided what I think are some excellent links below. http://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml https://iocdf.org/pandas/ http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/ http://healthier.stanfordchildrens.org/q-sudden-symptoms-first-sign-pans-pandas/
  19. The best Lyme doctors on the east coast are located in the D.C. area. It's a trek, but worth the trip. I'll message names, if you're willing to brave the Acela . Otherwise, Dr. Fallon's office at Columbia may be able to make a recommendation.
  20. It's absolutely possible to have strep in your ears. Both my PANDAS child and my non-PANDAS child have tested positive for a strep infection in their ears at one time or another. For the PANDAS child, locating the strep first step towards putting him into remission. For the non-pandas child, one ten day course of Augmentin brought down fever and cured the infection. If your daughter has fluid in her ears, it can be easily cultured. Please let me know if you get a positive result feel free to message me and I'd be happy to provide more detailed information about our journey.
  21. Terri are you referring to Dr. Bradstreet or Dr. Bouboulis? If Bouboulis, your information is correct regarding insurance. Blue Cross Blue Shield has dropped him and patients now must pay for office visits out of pocket and, in if they have the PPO, request reimbursement after reaching the deductible.
  22. There are no adult pandas doctors because, by definition, pandas is a pediatric illness. That said, it is possible for a prior pandas patient to continue to have strep induced OCD, and there are doctors who are willing to treat, particularly if you are referred by the diagnosing physician. Also, in my experience, many pediatric doctors will continue to treat patients through age 21.
  23. There is no science that suggests that PEX cures Lyme disease.
  24. If augmentin and azithromycin made symptoms worse, you could be dealing with a Herxheimer Reaction from Lyme. If Lyme is present, steroids would absolutely be counter indicated because they depress the immune system and make symptoms worse. Also, while we live on the east coast so our care is at Mass General, Stanford is known to have a wonderful PANS care. I've heard Dr. Jennifer Frankovich speak and would personally be thrilled to have her as our doctor. Here's the link. http://www.stanfordchildrens.org/en/service/pans-pandas
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