About Jamies Story His Recovery From Pandas

I hope the making of my YouTube video has given parents hope for their child suffering from PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep). Since this time top Physicians throughout the United States have begun to become educated about these crippling childhood neuropsychiatric disorders set off by STREP.  These conditions cause sudden onset of OCD and MOVEMENT DISORDERS such as TOURETTES & TICS. We learned this firsthand when our son, Jamie, developed these symptoms in 2001 several months after a strep illness.

Enough is Enough. I am saddened to hear there are many many children & families still suffering.

Through the work of Beth Alison Maloney and her book, Saving Sammy, we have begun to get the attention of the media. With the recent diagnosis of the “sneezing girl” (PANDAS) we have stepped into unchartered territory. My New Years Wish is that 2010 will bring our children safety, health and joy. Safety- meaning that our children will be safe in the hands of pediatricians who will know to recognize this disorder for what it is, an AUTOIMMUNE DISORDER. Health-meaning that the child’s physicians will all know how to effectively TEST for and TREAT this condition. A simple strep throat culture will not diagnose PANDAS. Blood levels must be tested for elevated strep titers. By treat I mean not only longterm antibiotics (if the condition is found to be strep related) but IVIG if non responding, as well as behavioral modification therapy by leading childhood ocd psychiatrists & psychologists and additional therapies by our holistic community. And finally, JOY, that we will bring to these children through my love of art and music, as they heal…And they will heal. These children’s cries will not be ignored.

Happy Holidays. It will be, indeed, a joyous NEW YEAR. (published December 7, 2009)

Marci                                                                                                                           Moondance to the Cure for PANDAS & PITAND
Twitter @Moondance2cure                                                                               Moondance2cure@gmail.com
Pandasfoundation.org Northwest “got strep” Regional Coordinator including Canada, Hawaii, UK

16 Responses

  1. Wow, I hit the PANDAS jackpot! Thank you. I’ve been reseaching as much inormation as I can get on the subject that started today for us.

    For several months our normal healthy active ten year old son was diagnosed with OCD. We’ve been treating with the different psyc drugs and counseling sessions.

    Today, my wife learned about Sammy’s story from a TV show. She calls up the peds and orders a strep culter and blood test. At the doctors office, they took the culture and the doc examined my son and didn’t find any symtoms of strep nor did my son complain of any symtoms, other than a mild sore throat.

    The doctor explained to me that PANDAS was very contraversial and the blood test is not needed, it would only determine that he had strep previously and they would not administer antibiotics on a previous positive. The last time he tested posititive for strep was back in 2006. Well, the culutre done today came back positive and they put him on Amoxicillin!

    Could it be PANDAS?? It did appear quickly, while in school, he got concerned about some ink that had spilled on his hands and has not stopped since. We need to find a medical person who understands PANDAS and how to diagnose and treat it effectively. Doesn’t appear I can get that from my peds. I found some contact information from Beth’s blog on a few doctors in Boston, we live in Maine. Monday, we will be on the phone trying to find some intelligent life on the subject.

    Keeping our fingers crossed!!

    Thank you so much for all of the information that you provided, now I’ve got to get back to the reading…..

    • Be careful. You don’t want to give your kid a whole bunch of antibiotics if they’re not needed. Unless his obsessions or tics are severe or interrupting his life, I would let it run its course. He may outgrow it.

      • In response to Deanna’s comment about unnecessary antibiotics “From my experience and from speaking with the parents of PANDAS children, antibiotics can and have significantly changed the course of this very debilitating disorder. Problem is, each time the child is exposed to strep or another infectious agent, symptoms get more and more severe. Jamie had atleast 1 maybe 2 prior PANDAS episodes. The one I documented in 2001 came on very suddenly. If we had known what we were up against, we could have potentially stopped this attack on the basil ganglia of the brain before it began if he had been on prophylactic antibiotics. We apparently were able to do this once he recovered from this episode as he remained in “remission” ever since and prophylactic antibiotics.”

  2. My son 15 y/o has been treated for Tic’s for several years now. Last May behavior seemed to be the issue in school (OCD and defiant). The only doc who would listen to me was the pediatrician who had blood taken and strep and titers were very elevated. The Neurologist stopped returning calls and would not discuss other options. The pediatrician prescribed anti-biotics and my son continued on them for 2 mos. In the meantime, we switched neurologists who also thought the idea of PANDAS was nuts. Medication was increased and Resperidol was introduced which is a very strong medication. Grades started dropping and behavior seems somewhat off. Last week blood was taken and once again strep count is very elevated.

    The last few days I have been researching who the top doc’s are in the field. Unfortunately, none of the immunologists take my insurance.

    Time is running out, because my son is in High
    School and his grades are ok, but he is not reaching his potential. The school denied Section 504.

    Any suggestions?

    Thank you for this forum to vent.
    :) Heidi

    • Heidi, The purpose of this blog site is to show how desperate our PANDAS children and family members are for unification of physicians from* all areas of expertise* on the diagnosis and treatment options available. Much like autism and tourettes, this condition falls under a “mental condtion”. However there is a *physical cause* (*strep*-PANDAS or another *infectious agent*-PITAND). You have touched upon many other issues here,as well. Beth Maloney , with the help of parents around the United States, is gathering a *list of physicians* who will help your son. You can request this list at info@savingsammy.net This list will continue to grow in the coming year.

      I agree with you that the longer treatment is denied, the longer our children will suffer. This is an autoimmune neuropsychiatric disorder that can be treated, currently with antibiotics and IVIG. I feel we can and will find other answers with the proper funding, which is critical. the newly formed PANDAS FOUNDATION is working on this.You can read about their updates at http://www.pandasfoundation.org Just as each child is unique, so is the response to treatment.

      The year 2010 will be the year that our PANDAS children *WILL GET WELL*. Beth Maloney worked too long and hard to get this disorder recognized with her book, *Saving Sammy. *Our physicians saved our son, Jamie. Our mission is to get physicians across the board to save all children crippled by these autoimmune disorders.

      Sincerely, Marci Lichtenwalter Moondance to the Cure for PANDAS & PITAND

    • On Tue, Dec 22, 2009 at 10:37 AM, marci lichtenwalter wrote:

      > Heidi, > The purpose of this blog site is to show how desperate our PANDAS children > and family members are for unification of physicians from* all areas of > expertise* on the diagnosis and treatment options available. Much like > autism and tourettes, this condition falls under a “mental condtion”. > However there is a *physical cause* (*strep*-PANDAS or another *infectious > agent*-PITAND). > You have touched upon many other issues here,as well. Beth Maloney , with > the help of parents around the United States, is gathering a *list of > physicians* who will help your son. You can request this list at > info@savingsammy.net This list will continue to grow in the coming year. > > I agree with you that the longer treatment is denied, the longer our > children will suffer. This is an autoimmune neuropsychiatric disorder that > can be treated, currently with antibiotics and IVIG. I feel we can and will > find other answers with the proper funding, which is critical. the newly > formed PANDAS FOUNDATION is working on this.You can read about their updates > at http://www.pandasfoundation.org Just as each child is unique, so is the > response to treatment. > > The year 2010 will be the year that our PANDAS children *WILL GET WELL*. > Beth Maloney worked too long and hard to get this disorder recognized with > her book, *Saving Sammy. *Our physicians saved our son, Jamie. Our mission > is to get physicians across the board to save all children crippled by > these autoimmune disorders. > > Sincerely, > Marci Lichtenwalter > Moondance to the Cure for PANDAS & PITAND > > > > > > > > >

  3. I’ve recently started a blog, the information you provide on this site has helped me tremendously. Thank you for all of your time & work.

  4. Gotta love the effort you put into this blog :)

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  7. I wanted to congratulate you for this superb read!! I definitely enjoyed every little bit of it. I have bookmarked your site to have a look at the new articles you post. Thanks again!

  8. This is my second visit to your blog. We are starting a brand new initiative in the same niche as this blog. Your blog provided us with important information to work with. You have done a marvellous job.

  9. The condition is in fact PITAND, inf which strep antibodies are only one of the causes. Our 20 yo D got it at 15 after contracting pneomonia caused by mycoplasta pneomoniae bacteria and I know of others who seem to have the same symptoms due to Lyme, so we need to talk of the entire spectrum of causes known to date.
    As much as you do not want to give your child antibiotics for unfounded reasons neitehr would ou like to give him or her antipsychotic drugs that have unreverssable side-effects, and in the case of PITAND-PANDAS caused symptoms these are often highly damaging.
    Our experience:
    As for treatment, we had grand results of 1 year free of any symptoms after short courses of Azithromycin and Preddnisone 60mg, but the condition returned after a year following a resp. infection. this time even long term Prednisone did not do the trick but IVIG did very well, until its treatment schedule got messed up by medical bureaucracy and another infection brought symptoms back. After trying Tuorette’s symptomatic medication that only got her psychotic like, and 2.5 years of having bno help from medical experts our old and loyal GP, the only one who never left us, put her on Azith 500mg a day, and after 6 months the reusults are most interesting. Her IgG antibodies for Mycoplasma P are down from extremely high 200 to low positive 39, movements and sounds as well as hairpulling are off but compulsive behaviour not yet gone as she would not walk on her own unaided etc.
    Have been struggling to get IVIG again but cannot get a single specialist in Finland to realise what this is about, so all we can do is keep on taking Azith and hope that what abx did to others, Sammy and Jaimie, it will do for our btright young woman who only wants to go back to highschool, complete the years she missed, get to med school and go ahead with her life.

  10. Thank you for your great website. Parents like you who are getting the word out are terrific. We took our daughter for a strep test just six days after seeing her having involuntary arm movements. She is getting the PANDAS workup on Monday and will be seen by the Neurologists for treatment. I will be using this incredible website. I love your Youtube message too. It is so hopeful. Thanks.

  11. My 11 year old son has been suffering with PANDAS since 2008. We were lucky to get a diagnosis, but no one wants to treat him. This is frustrating since we live in Pittsburgh, which is supposed to be a highly recognized medical area. Children’s Hospital of Pittsburgh is doing a study to see if PANDAS exists! Seriously??? The third pediatrician we saw did prescribe Keflex for 1 month. Also checking titers,etc. Seeing a pediatrician at CHP who is head of Diagnostic Services. We’ll see what he said. Our pediatrician said,”Don’t be surprised if he is upset that a gave your son antibiotics”. I am just curious what he has to say on the matter. He is very highly respected. My son has not been to school in 1 month due to separation anxiety. One of the pediatricians that I saw told him,” By the time you finish your antibiotics (10 days of amoxicillin) you need to go back to school”. So tired of banging my head against the wall!

  12. My 11 year old son has been suffering with PANDAS since 2008. We were lucky to get a diagnosis, but no one wants to treat him. This is frustrating since we live in Pittsburgh, which is supposed to be a highly recognized medical area. Children’s Hospital of Pittsburgh is doing a study to see if PANDAS exists! Seriously??? The third pediatrician we saw did prescribe Keflex for 1 month. Also checking titers,etc. Seeing a pediatrician at CHP who is head of Diagnostic Services. We’ll see what he said. Our pediatrician said,”Don’t be surprised if he is upset that I gave your son antibiotics”. I am just curious what he has to say on the matter. He is very highly respected. My son has not been to school in 1 month due to separation anxiety. One of the pediatricians that I saw told him,” By the time you finish your antibiotics (10 days of amoxicillin) you need to go back to school”. So tired of banging my head against the wall!

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