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mommybee

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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 stud
  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
  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 dan
  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 (re
  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
  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 proba
  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 c
  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
  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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