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mommybee

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  1. Like
    mommybee got a reaction from mmiglio in I just really need some help/advice   
    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
  2. Like
    mommybee reacted to nicklemama in Immune Dysfunction   
    If you are seeing Dr Bock, you are in great hands.
  3. Like
    mommybee got a reaction from nicklemama in Immune Dysfunction   
    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.
  4. Like
    mommybee reacted to ktdommer in Your input please   
    Mommy bee your post is amazing.
    My son's processing speed is far below his IQ. He is frustrated by it as are we as parents. I'm not talking auditory processing. The doctor believes it is an effect of bartonella mostly.
    If your daughter has Lyme would it be congenital? Do you remember a bite?
    It gets tricky knowing what might have been despite PANS or Lyme.
    K
  5. Like
    mommybee got a reaction from qannie47 in Your input please   
    I have two thoughts. The first is whether this could this be a focus problem. Attentional difficulties are a symptom of encephalitis. The second is about auditory processing. When the subject matter being discussed is complex (i.e. a lecture about involving new information in the classroom, or about something socially challenging), people with auditory processing difficulties often need more time to process the incoming auditory information. How old is your daughter? HIgh school can be challenging for bright students who have unidentified auditory processing glitches. Fine tuned neuropsych testing may be indicated.
  6. Like
    mommybee got a reaction from MaryAW in Am I foolish to think that my daughter is going to get better?   
    My child got better. Now 100%
  7. Like
    mommybee reacted to cobbiemommy in Help to understand sons blood work   
    I highly recommend dr b. his office no longer accepts Cigna, just so you know. He would be worth the money out of pocket. He brought my son back from the brink. You need another medical opinion.
  8. Like
    mommybee got a reaction from Janny in Help to understand sons blood work   
    Hi Janny-
     
    While those are crazy high numbers, the American Academy of Pediatrics advises against antibiotic treatment unless titers are rising. They are instructed to assume titers are falling in the absence of two sets of lab results so in all likelihood most traditional doctors (those who take insurance) will prescribe antibiotics without further confirmation of a current bacterial infection. I am not familiar with Dr. Orman-Lubell, but Dr. Trifileti is quite expensive and doesn't take insurance. Worse, he charges for "phone consults" to provide lab results. People swear by him, but his care doesn't come cheap.
     
    I have two thoughts. First, if not too far, Dr. Bouboulis is an immunologist Fairfield County who takes insurance for office visits. He also does more sophisticated Lyme testing than that which was offered to your son. The best Lyme test is the Western Blot through Igenex in CA. This test isn't covered by insurance, but is relatively inexpensive (a few hundred dollars for Lyme and co-infections). If you don't want to lay out the cash, Stony Brook Laboratories in New York runs a decent Western Blot test, but you must be sure that the doctor requests that ALL the bands be reported out. Their test is covered by insurance.
     
    I'd provide more information, but that's hard to do without knowledge of your child's symptoms. I hope this is helpful and not information you already have.
  9. Like
    mommybee got a reaction from Teri in Doctor Spooked # of MEDs   
    I hope all is going better for you T. Anna and that you had a good holiday. It's a good thing that you dropped that doctor. It's never a good sign when a doctor at a big teaching hospital can't even spell the word "medicine". If you don't find what you are looking for in Drs. Trifileti or Hollander, I would recommend Dr. Bouboulis in Darien. Unlike Dr. T, he takes insurance for office visits and treats both PANDAS and Lyme. While not ILIADS trained himself, he consults with Dr. Charles Ray Jones who is the granddaddy of pediatric Lyme Disease. We have seen both doctors with excellent results. Please feel free to message me with questions or for further information.
  10. Like
    mommybee got a reaction from tenyearswithpans in Weaning off Prozac   
    Gee. The doctor who prescribed prozac for my child (20 mg, if I remember correctly) said that because of the long half life, the Prozac self tapers. In other words, it leaves the system slowly. Because the medicine was never of any help in the first place (SSRI's aren't effective if the cause of the OCD is triggered by an infection rather than a serotonin imbalance), I don't have any personal knowledge about whether our doctor was correct or not. All I can say is that my kid just stopped taking the stuff with no problems at all.
  11. Like
    mommybee reacted to filinha1 in New Lyme Article from the Boston Globe   
    Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and some fringe noisemakers, but heavy-hitters on both sides.
     
    If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate.
     
    I think our best bet is to lobby our local and state politicians, to force laws that require insurance to pay for treatment that a licensed physician has prescribed for his patient.
     
    Heather
  12. Like
    mommybee got a reaction from beeskneesmommy in Augmentin XR + Zithromax Combo Anyone?   
    My kid was on that combo along with Bactrim to fight strep and Bartonella and he did fine. When his strep titers began to fall, his doctor took him off the Augmentin and substituted Cefdinir to act as a prophylactic because it's easier on the stomach. This treatment has been very successful. He is currently virtually symptom free. Strep titers are descending and his bart rash is fading.
  13. Like
    mommybee reacted to Hayley in The need for more   
    Great post LLM. I have professional experience in fundraising and organizing and have felt, since my daughter was diagnosed, so anxious to see the energy from this forum channeled into the organized action we all need and want so much. I hope this isn't against forum rules, but I am compelled to take this opportunity to give one particular organization a little plug (given all they've done for me and especially since Miss Mom asked for recommendations of groups that could use help!). I have actually been doing some volunteer work with PANDAS Network (www.pandasnetwork.org) and have truly been so impressed by their work in every way.
     
    This endorsement of PANDAS Network is in no way meant to slight any other organization/individual out there... I know there are others doing great work and I deeply appreciate all efforts on behalf of our kids. I'm just sharing what I know of this one very worthy organization.
     
    From what I can gather, PANDAS Network is the most long-established PANDAS/PANS nonprofit organization we have as a community with strong visibility and a great track record and well positioned to be a launchpad for a bigger movement. As most people on this forum, I found www.pandasnetwork.org early on in my research and benefitted consistently from a ton of information they provide. The fact that the group's name comes up so consistently on this boards shows how well utilized it is as a resource.
     
    For those who don't know, PANDAS Network is a 501c3 nonprofit that was started by a parent, Diana Pohlman, who, like all of us, just wanted to help find answers for her kids. While it continues to be run exclusively by volunteers it is backed by a very impressive scientific board, has big players (Swedo and Latimer) on it's Board of Directors and is a part of the NIMH partnership program. Among other projects, they are in the process of completing a national survey to document PANDAS cases; they were involved in a private PANDAS meeting at Stanford just last month (and plan to release more info on that when they can); and have a newsletter coming out shortly. PANDASnetwork.org is a go-to organization not only for parents, but also for members of the media and others who want information. When they respond it is always with input from members of the scientific advisory board so there is no doubt that the information is fact-based and credible. They are doing a ton of work, but are limited by the fact that they currently do not have the resources to operate as a staffed organization. All of their achievements , all the resources on their website, all the time and energy they devote to helping families...everything has been done by volunteers who squeeze in this work around other jobs and family commitments including managing their own PANDAS kids. It's amazing what they have gotten done under these circumstances and incredible to think about what they could do with adequate resources.
     
    PANDAS Network recently did some strategic planning and developed a business plan laying out programmatic goals (research, education, family supports, etc.). The plan also lays out strategy for building infrastructure (e.g., staffing up and, to that end, fundraising) acknowledging that this is absolutely critical to realizing the programmatic goals.
     
     
    I think that as an organization run by parents, and recognizing how much all of our families have been through, PANDAS Network.org has operated with a sensitivity, trying to always give to this community and not ask aggressively for anything in return. However, they ARE a nonprofit and if they are to achieve their potential as an organization, they really do need financial (and other) support. If you have used their resources and/or value their role, I encourage you to think about ways you might contribute whether it is a small (or large ) financial contribution (and remember many employers will match your personal gift to a nonprofit), organizing a little fundraiser in your community (restaurants, gyms, schools often have things set up where you can easily arrange a charity night where some percentage of proceeds go to a nonprofit), asking friends or family to make donations in lieu of birthday or holiday gifs..... There are lots of ways to contribute even if the demands of this disorder make it difficult for you to write a check yourself. And if anyone is in the DC area and wants to join forces to do some fundraising/awareness building for PANDAS Network, please feel free to PM me. A friend and I have been tossing around some ideas and we hope do put something together soon....
     
    And to so many of you who are already giving time, energy, money, ideas, etc. to help our kids as a group...THANK YOU!
  14. Like
    mommybee got a reaction from Kathy4Him in Interesting perspective from Beth Maloney   
    I am grateful for information too. Like you, Niclemama, I figured out that my child had PANDAS and brought it to the attention of our doctors. I also think that public outcry can put pressure on politicians, Peglem.
     
    But public outcry doesn't sway the medical community and doesn't fund research. It just doesn't. Publicly linking a disease with symptoms that aren't a part of the disorder undermines the process. It alienates the medical community. Doctors will become less likely to listen to what their patient's mothers are saying. Misinformation is dangerous. Grant Accord's diagnosis is highly speculative. Entirely hearsay. There is simply no peer reviewed research that suggests that PANDAS leads to sociopathy. Not one shred.
     
    I do not want my child or his illness associated with symptoms that he doesn't have. I doubt any PANDAS parent does. So if the media is fed misinformation that it reports to the public, I am going to keep quiet about the diagnosis, not because I'm ashamed but because I don't want the people to think that my child is a budding psychopath, when he isn't.
     
    I can understand why parents of children who have comorbid conduct disorders might be less worried about this. Nonetheless, it's not in anyone's interest for the parents of children who fall under the strict diagnosis, receive proper treatment and get better, to fall silent. WE are the one's who could be championing the cause if we weren't silenced. After all, WE have the voices the the medical community can hear.
     
    I think Beth and her followers have made a mistake on this one and if she continues on this trajectory, sooner or later, people are going to stop listening.
    Beth is very smart. I'm sure she will ultimately come to realize that her reputation is at stake and begin to measure her words more carefully. She does not want the medical community to view her as a loose cannon who doles out inaccurate sound bites. And she certainly does not want the handful of PANDAS doctors across the country to stop taking her calls. But they will if she continues in this vein.
  15. Like
    mommybee reacted to PowPow in Interesting perspective from Beth Maloney   
    I do not necessarily think we (well, me- cannot speak for mommybee) want to hide things.
    I just want correct information to be given out.
    If you are going to call it PANDAS- it better fit the definition-- or we are all toast, scientifically speaking.
    We all use PANDAS here, interchangeably- and we all know what that mean- but to an outsider:
     
    PANDAS is specific. If you say PANDAS & there is/was no strep--- you are (in their minds) exaggerating, self-diagnosing, not admitting to mental "illness" whatever.
     
     
    Hence, the creation of PANS-- which I like way better- for obvious reasons-one of my most-affected kids did not have strep.
     
    everytime one of us (or other parents) goes to a doctor and says- "my kid has PANDAS" and the doctor is on the fence & your kid does NOT have "real" strep- associated PANDAS- you will drive another doc away or at least lose credibility. That is the crux of this to me.
     
    I know no one cares about my little semantic argument-- but I think this is SO SO important.
  16. Like
    mommybee got a reaction from T_Mom in Interesting perspective from Beth Maloney   
    Beth Maloney is responsible for linking of Grand Accord and PANDAS in the media. Why? To raise public awareness. The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television.
     
    Yet, we are a sound bite culture. Connecting PANDAS with horrible acts of violence will stigmatize children who have been diagnosed with the disorder and silence their parents.
     
    My child is on the back nine. I am no longer in the emotional place that I know some of you are. We were lucky. Antibiotics alone were curritive and we didn't have to address comorbid symptoms separately because there weren't any. In short, my kid was one of the few who actually fit the narrow diagnostic criteria that so many of us would like to see broadened. I had the poster child. Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.) But after this media blitz, I'm going to be very careful about what I say publicly. My child isn't, has never been, and isn't likely to become violent and I won't allow him to be stigmatized. Should he get strep again and develop symptoms, I doubt I will ever again call it PANDAS. Going forward, I shall err on the side of vagary.
     
    While she has done much good, I think Beth's efforts this time were ill conceived, if not self-serving.
  17. Like
    mommybee reacted to Kathy4Him in Interesting perspective from Beth Maloney   
    No tomatoes from me Nancy just an AMEN! While my heart hurts for this mom and her son, I was troubled from the start over the hubbub on FB linking pandas to such violence as my son is 24 yrs old and I would NOT want anyone to look at his diagnosis and think he could be capable of such a horrific act. My son has never been violent, never had rages, love the Lord, smiles all the time even while suffering thru this illness. On the day of his 2nd liver biopsy and heart cath, the chief of hepatology at the hospital told me, he went in smiling and came out smiling. With that said, we never allowed violent video games, tv shows or movies in our home...he never asked for them either.
  18. Like
    mommybee reacted to dcmom in Interesting perspective from Beth Maloney   
    I have been thinking about how to respond to this post, and have been wondering if I should even get involved.
     
    Thank you (as usual) to Momwithocdson, Nancy, for taking the words out of my mouth, making them a little more succinct and eloquent, and taking the time to post a well reasoned and thought out opinion. I am in total agreement with everything that you stated.
     
    I also agree with powpow- pandas is not a "brain infection" it is an autoimmune response to illness. There is a major difference, it is not semantics.
     
    I have seen my children rage- however, it is "in the moment" rage in response to ocd, for which they have been desperately sorry for- I think this is very typical of pandas. I have never seen, or frankly heard of, or seen documented, any, premeditated violent acts, even minimal, from my or other pandas kids.
  19. Like
    mommybee reacted to MomWithOCDSon in Interesting perspective from Beth Maloney   
    I'll just say upfront that I'm a little hesitant to join this fray in any detail, as it's clear that people have some very strong views and feelings; however, I do feel as though some things need to be said, and I've never been one to keep my mouth shut, even when it might be advisable.
     
    I have no desire to throw this mom or her son "under the bus." And I am probably as certain as anyone on this board that most, if not all, "mental illness" has its roots in a physical medical issue, whether it's tied to infection or inflammation or methylation, or genetics, or a combination of one or more of these. Therefore, I am every bit as anxious as anyone else to see the medical and mental health communities get their "stuff" together and start looking for root causes, rather than just treating the symptoms or the resulting behaviors, sharing information and research, and ceasing this ridiculous territorial fight over what is "mental" and what is "medical".
     
    I am also eternally grateful to Beth Maloney and everyone else who has worked tirelessly to inform, educate and advocate for the PANDAS/PANS community. I owe Beth a personal debt of gratitude because her book was what brought us to PANDAS to begin with, so there's no animosity here in that respect.
     
    That being said . . . I truly don't think it is in anyone's best interest -- not these kids, not their parents or families, not our kids or our families -- to throw the term "PANDAS/PANS" out there in the face of these sorts of horrific events. Our childrens' illness is already grossly misunderstood, so the idea that members of the general public or the medical community who are, at this point in time, dismissive of PANDAS/PANS as a legitimate illness, would have "their eyes opened" by linking this boy or Adam Lanza to PANDAS/PANS is, I fear, a misdirected expectation at best, and quite likely detrimental to our best attempts at educating the public and medical professionals at worst.
     
    Again, these two particular events/persons that have been cited in this thread were most definitely suffering from illness, and the boy who still lives needs help. Perhaps PANDAS is part of the mix, but as those of us with older kids who have suffered for an extended period well know, the microbe and its mischief are only a part of the puzzle. Without intensive and lengthy therapy, my PANDAS son would quite likely still be stymied mightily by OCD because those coping behaviors become "normal" for him, because it can become habit. So pumping him full of abx or IVIG alone would not have led to the success he's experienced. There's more involved in the illness and the healing, as I think we all know.
     
    But throwing Aspberger's, PANDAS, PANS, etc. out there like spaghetti against a wall isn't really shedding light or spurring on research or enlightenment . . . it's just giving the folks who already dismiss or misunderstand more fodder for confusion and/or turning their collective backs on us and our kids. And lumping extreme acts of premeditated violence like these in with any of the "labels" like Asperger's, PANDAS, PANS -- I'm sorry, I have to say I feel that it is irresponsible. We don't know what was in these boys' minds, we don't know what kind of help they were truly being given or what was being withheld, either out of ignorance or lack of access. And too many of our PANDAS kids are absolutely not capable of even contemplating such violence, let alone committing it. But the general public doesn't know that, and likely many medical practitioners don't know that, either. So why would any of us want to plant that seed?! To get attention?! Isn't that a little like the kid who misbehaves to get attention, even if it's negative attention, because any attention is better than no attention?! I truly think we can be more discriminating than that.
     
    Help everyone, yes! Get the word out about causal links between infection/medical illness and mental illness, absolutely! Drive the demand for research in this regard, heck yes! But I think we need to show some restraint and, for lack of a better term, some "global responsibility" in the process.
     
    I've got my umbrella at the ready for the tomatoes . . .
  20. Like
    mommybee reacted to PowPow in Interesting perspective from Beth Maloney   
    Well said ,mommybee!
     
    I think I could kiss Dr Bubrick;)
  21. Like
    mommybee reacted to PowPow in Interesting perspective from Beth Maloney   
    I appreciate Beth's efforts.
    However, PANDAS is not a brain infection. These small slip-ups really have an effect on the medical community. "They" think "we" have not a clue what we are talking about.
    A brain infection is not the problem here.
     
    LaurenK : can you post the link to the article you mentioned?
  22. Like
    mommybee got a reaction from Tattoomom in Interesting perspective from Beth Maloney   
    The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid.
     
    Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.
  23. Like
    mommybee got a reaction from emmalily in Interesting perspective from Beth Maloney   
    The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid.
     
    Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.
  24. Like
    mommybee got a reaction from MomWithOCDSon in Interesting perspective from Beth Maloney   
    The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid.
     
    Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.
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