Our children need help NOW! PANS: PANDAS-PITAND Legislation

People sometimes ask me how they can help in our journey with PANDAS. Please read this and take a few minutes to write your representatives on behalf of children who desperately need medical care for these autoimmune conditions. Thank you!
Do you have a child or know a family who has been impacted by PANS: PANDAS-PITAND?

I encourage everyone to contact their state representatives in support of similar legislation!  This will only take a few minutes of your time and will do so much to help a child whose life has been turned upside down.

See this link: http://www.usa.gov/Contact/Elected.shtml to contact your representatives!  It’s imperative to share with them the devastating impact this has on children and their families and the urgent need for additional research, as well as ICD listing and insurance coverage!
Please, be clear that high dosage IVIG *has* been shown to be helpful for these autoimmune conditions and should be covered by insurance for all PANDAS-PITAND (PANS) children.  Each treatment costs $ 10,000 – $ 12,000 and many children (such as Faith) require ongoing infusions.  Often, they are not covered by insurance.
The NIMH page is clear and they are currently conducting another study to demonstrate the benefits of IVIG.  See: http://intramural.nimh.nih.gov/pdn/web.htm and refer your representatives to this page as well as this 1999 study: Therapeutic plasma exchange and intravenous immunoglobulin for obsessive compulsive disorder and tic disorders in childhood. Perlmutter, S. et al. 1999
Also, direct them to our website:  PANDAS-PITAND Awareness & Research Supportfor additional information. Review the list of symptoms on our home page.  Imagine your previously normal child suddenly becoming gripped by most, if not all of these symptoms at extreme levels of intensity.  These children know there is something very wrong with their brains… they live with sudden onset

  • phobias,
  • obsessions,
  • contamination fears,
  • anxieties,
  • separation fears,
  • school refusal (yes, even children who loved school and were in gifted classes),
  • incontinence
  • sleep difficulties, including fear of sleeping in their own room
  • academic decline & loss of previously acquired skills, especially Math
  • uncontrollable movements
  • emotional lability, including rages (even in children who previously did not have temper tantrums)
  • ADHD
  • Major Depression
  • Relentless unwanted “bad thoughts” (this can range from thoughts of harming others to thoughts of suicide)
  • compulsions
  • memory loss
  • inability to trust your own brain and body that are suddenly turning on you in dramatic ways

The lives of your family change, literally overnight and are never the same… unless you can get this monstrous auto-immune disease into remission.

I co-admin a group of hundreds of PANS: PANDAS-PITAND parents, that grows daily.  These families are in crisis, desperate to find help for their seriously ill child(ren).  There are only a handful of physicians in this country who are currently experienced in treating these conditions.  If you have any questions about these conditions, please message me through this blog or our website: PANDAS-PITAND Awareness & Research Support Contact page
Our children can’t wait.  They need help NOW!   Thank you for helping a child… please share this post.
PANDAS & PITAND Awareness Ribbon

PANDAS-PITAND Awareness Ribbon

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8 Comments (+add yours?)

  1. Carolyn Greaud
    May 22, 2012 @ 23:26:38

    So very eloquent! You speak not only for our precious Faith, but for so many others, all struggling with this bewildering and frightening illness, which impacts each household with such tremendous force. I will pass this link on to friends who are concerned for each of you. We are all praying.

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      May 22, 2012 @ 23:45:28

      Thank you! It’s difficult to accurately articulate what life becomes when PANDAS strikes a child and the desperation to save them as endless days and nights become filled with worry… that have now turned into over three years for our family… even longer for others. ‘Tremendous force’ is fairly close… reminds me of a tornado. The damage and change are shocking.
      It’s so very sad that these children previously led lives so filled with promise. Most were honor roll, gifted children in advanced classes; leaders among their peers… PANDAS reduces their lives to chaos in less than 24 hours.

      Reply

  2. simo
    May 24, 2012 @ 00:48:56

    …translated in french for the Int’l Group! …Marilina will take care of the italian version by the weekend:)
    ❤ …thank you for your strong commitment!!! Love to Faith…

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      May 26, 2012 @ 14:07:36

      Thank you so much for the translation! ♥

      Reply

    • PANDAS - PITAND ~ Mom to My Hero
      May 26, 2012 @ 14:08:49

      Nos enfants ont besoin d’aide! PANS: PANDAS-PITAND Législation
      22 Mai 2012

      ~par PANDAS – PITAND ~ maman à mon héros ~ ♥ ~ Faith mises à jour ~ ♥ ~ Tags: Tags: PANDAS, OCD, Autoimmune, molecular mimicry, basal ganglia, Mycoplasma Pneumoniae, Lyme disease, Health, Group A Strep, Intravenous immunoglobulin, IVIG, high dose IVIG, strep, strep throat, child, Awareness ribbon, Mycoplasma, Obsessive–compulsive disorder, Research, Autoimmnue, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, Ehrlichiosis, Tick-borne disease, P.A.N.D.A.S., Insurance, Group A streptococcal infection, Autoimmunity, PANS, PANDAS-PITAND, Tics, Autoimmune disease, NIMH, ICD, DSM, Government, Bill, Act, Representative, Senator, Congress, House of Representatives, Governor, Legislation, Babesia, Bartonelle, Rocky Mountain Spotted Fever, P.I.T.A.N.D., P.A.N.S., N.I.M.H., Bartonella, International Statistical Classification of Diseases and Related Health Problems, brain

      Parfois les gens me demandent comment ils peuvent aider dans notre ‘voyage avec PANDAS’. S’il vous plaît lire ici et prendre quelques minutes pour écrire vos représentants au nom des enfants qui ont désespérément besoin de soins médicaux pour ces maladies auto-immunes. Je vous remercie!
      Avez-vous un enfant ou connaissez une famille qui a été impacté par-PANS: Les Pandas-PITAND?
      S’il vous plait, allez a’ la page : http://foothillsmediagroup.com/articles/2012/05/18/opinion/doc4fb6c941c6966162048006.txt
      J’encourage tout le monde à communiquer avec les représentants à l’appui de leur législation similaire a ceci! Cela ne vous prendrà quelques minutes de votre temps et il peut faire beaucoup pour aider un enfant dont la vie a été bouleversée-bas.

      Voir ce lien: http://www.usa.gov/Contact/Elected.shtml à contacter vos représentants! Il est impératif de partager avec eux l’impact dévastateur que cela a sur les enfants et leurs familles et le besoin urgent de recherches supplémentaires, ainsi que la couverture d’assurance et la liste CIM!* (*”CIM-10″) est une liste de classifications médicales codant notamment les maladies, signes, symptômes, circonstances sociales et causes externes de maladies ou de blessures, publiée par l’Organisation mondiale de la Santé (OMS)1)
      S’il vous plaît, vous devez savoir que un forte dose d’IgIV que * a été * démontré pour être utile pour les conditions auto-immunes et ceux-ci devraient être couverts par une assurance pour tous les enfant qui souffrent avec -PANDAS PITAND (PANS). Chaque traitement coûte 10.000 $ – $ 12,000***+ et de nombreux enfants (comme la mienne) nécessitent des perfusions continues. Souvent, ils ne sont pas couverts par une assurance.
      La page est apparent et NIMH est en mènent actuellement une autre étude pour démontrer les avantages d’IgIV. Voulez-vous voir: http://intramural.nimh.nih.gov/pdn/web.htm parrain et vos représentants à cette page ainsi que cette étude de 1999: l’échange thérapeutique de plasma et immunoglobulines intraveineuses dans le trouble obsessionnel-compulsif et des tics de l’enfance. Perlmutter, S. et al. 1999
      En outre, vous pouvez les diriger vers notre site Web: PANDAS-PITAND sensibilisation et information Support de recherche supplémentaire. Consultez la liste des symptômes sur notre page d’accueil. Imaginez votre enfant auparavant normal devient soudain saisi par la plupart, sinon la totalité de ces symptômes à des niveaux extrêmes de l’intensité.
      Ces enfants savent qu’il y a quelque chose de très mal avec leur cerveau … ils vivent avec l’apparition soudaine phobies et obsessions:
      Les craintes de contamination,
      Angoisses,
      Les craintes de séparation,
      Refus scolaire (oui, même les enfants qui aimaient l’école et étaient dans des classes doués),
      Incontinence
      Troubles du sommeil, y compris leur propre peur de dormir dans la chambre
      Déclin de la académiques et la perte calculés compétences acquises antérieurement, surtout en mathématiques
      Mouvements incontrôlables
      Labilité émotionnelle, y compris les rages (même chez les enfants qui jamais avaient eu accès des crises de colère)
      TDAH (Trouble Déficit de l’Attention Hyperactivité )
      La dépression majeure
      Pensées constantes indésirables ou des “mauvaises pensées” allant d’un désir de faire du tort à autrui au suicide!
      Les compulsions
      La perte de mémoire
      Incapacité à faire confiance à votre propre cerveau et votre propre corps qui sont tout à coup tournant sur vous de façon spectaculaire…

      Je suis une des administrateurs d’un groupe prive’ des parents de PANS: Les Pandas-PITAND parents, que croît chaque jour. Ces familles sont en crise, et elles cherchent désespérément à trouver de l’aide pour leur enfant(s) gravement malade (s). Il y a seulement une poignée de médecins dans ce(ttes) pays qui sont actuellement expérimenté dans le traitement de ces conditions. Si vous avez des questions concernant ces conditions, s’il vous plaît envoyez moi un message à travers ce blog ou notre site Web: Sensibilisation PITAND PANDAS & Soutien à la recherche-page
      Nos enfants ne peuvent pas attendre. Ils ont besoin d’aide maintenant! Merci d’ aider un enfant … s’il vous plaît partagez ce post avec tout le monde.

      Ruban de conscience de PANDAS-PITAND

      Reply

    • PANDAS - PITAND ~ Mom to My Hero
      May 26, 2012 @ 14:09:55

      I nostri bambini hanno bisogno di aiuto ORA!!
      PANS: PANDAS-PITAND Legislation
      di PANDAS – PITAND ~ Mom to My Hero in ~♥~ Faith’s updates ~♥~ Tags: Act, Autoimmnue, Autoimmune, Autoimmune disease, Autoimmunity, Awareness ribbon, Babesia, Bartonella, Bartonelle, basal ganglia, Bill, brain, child, Congress, DSM, Ehrlichiosis, Government, Governor, Group A Strep, Group A streptococcal infection, Health, high dose IVIG, House of Representatives, ICD, Insurance, International Statistical Classification of Diseases and Related Health Problems, Intravenous immunoglobulin, IVIG, Legislation, Lyme disease, molecular mimicry, Mycoplasma, Mycoplasma Pneumoniae, N.I.M.H., NIMH, Obsessive–compulsive disorder, OCD, P.A.N.D.A.S., P.A.N.S., P.I.T.A.N.D., PANDAS, PANDAS-PITAND, PANS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, Representative, Research, Rocky Mountain Spotted Fever, Senator, strep, strep throat, Tick-borne disease, Tics

      La persone a volte mi chiedono come potrebbero aiutarci nel nostro cammino con la PANDAS. Vi invitiamo a leggere questo breve documento e dedicare qualche minuto per scrivere ai rappresentanti delle istituzoni a favore dei bambini che hanno un disperato bisogno di cure mediche per queste patologie autoimmuni. Grazie!
      Avete un figlio o conoscete una famiglia che è stata colpito dalla PANS: PANDAS-PITAND?
      Gurdate qui: http://foothillsmediagroup.com/articles/2012/05/18/opinion/doc4fb6c941c6966162048006.txt
      Invito tutti a contattare i rappresentanti delle istituzioni statali a sostegno di una simile legislazione! Questo impegno comporterà solo pochi minuti del vostro tempo e sarà di molto aiuto per ogni bambino la cui la cui vita è stata stravolta completamente.
      Attraverso questo link: http://www.usa.gov/Contact/Elected.shtml potrete prendere contatti con le istituzioni! È fondamentale informarli dell’impatto devastante che questa malattia ha sui bambini e sulle loro famiglie e dell’urgente necessità di ulteriori ricerche, dell’inserimento nell’elenco ICD e della copertura assicurativa! Siate estremamente chiari nell’informare che le IVIG ad alto dosaggio si sono dimostrate efficaci in queste condizioni autoimmuni e che devono essere accessibili e coperte dall’assicurazione per TUTTi i bambini PANDAS-PITAND (PANS). Ogni endovena in USA costa $10,000 – $ 12,000 e molti bambini (come la mia Faith) necessitano di più cicli. Spesso, queste cure non sono coperte dall’assicurazione.
      Nel sito del NIMH è tutto spiegato con chiarezza e attualmente stanno conducendo un altro studio che mira a confermare i benefici apportati dal trattamento con IVIG. : http://intramural.nimh.nih.gov/pdn/web.htm
      Invitate i rappresentati delle istituzioni a visionare anche questo studio del 1999: Therapeutic plasma exchange and intravenous immunoglobulin for obsessive compulsive disorder and tic disorders in childhood. Perlmutter, S. et al. 1999
      Un invito a tutti a visitare il nostro sito web: PANDAS-PITAND Awareness & Research Support per avere informazioni ulteriori e scorrere l’elenco dei sintomi sulla nostra home page. Immaginate che il vostro bambino precedentemente normale improvvisamente fosse preda della maggior parte, se non di tutti questi sintomi ad un livello di intensità molto alto. Questi bambini sono consapevoli che c’è qualcosa di molto sbagliato nei loro cervelli …e vivono con l’incubo dell’esordio improvviso di:
      • fobie
      • ossessioni
      • paure di contaminazione
      • ansie
      • ansia dda separazione
      • rifiuto della scuola (si, anche bambini che amano la scuola e che magari sono i migliori della classe),
      • incontinenza
      • distirbi del sonno, inclusa la paura di dover dormire da soli nella loro stanza
      • peggioramento delle abilità accademiche e perdita delle abilità acquisite, soprattutto in matematica
      • movimenti incontrollabili
      • labilità emotiva, scatti di rabbia (anche in bambini che in precedenza non hanno mai manifestato scatti di ira)
      • ADHD
      • Depressione Maggiore
      • Cattivi pensieri (possono andare dal pensare di essere responsabili del male fatto ad altre persone a pensieri di suicidio)
      • compulsioni
      • perdita di memoria
      • incapacità di fidarsi del proprio cervello e del proprio corpo che improvvisamente si rivoltano contro alla volontà della stessa persona in modi drammatici
      Immaginate che la vita della vostra famiglia cambi totalmente nell’arco di una sola notte, e che non sarà mai più la stessa …… fino a che non riuscirete a sconfiggere questa terificante malattia autoimmune.
      Sono co-amministratrice di un gruppo formato da centinaia di genitori PANS: PANDAS , gruppo che cresce ogni giorno. Queste famiglie sono in crisi, alla disperata ricerca di aiuto per il loro figlio/a/i gravemente malato . Ci sono solo una manciata di medici in questo paese (U.S.A) che attualmente si stanno impegnando nel trattamento di queste condizioni autoimmuni. Se avete domande su queste condizioni, vi invito a chattare con me attraverso questo blog o attraverso il nostro sito web:
      PANDAS-PITAND Awareness & Research Support Contact page
      I NOSTRI BAMBINI NON POSSONO ASPETTARE. HANNO BISOGNO DI AIUTO ORA!
      Vi ringrazio per avere aiutato un bambino…..vi invito a divulgare questo documento.

      Reply

  3. teechamp
    May 25, 2012 @ 08:40:12

    I can say from personal experience in the autism community fighting for insurance coverage for treatment and therapy for a diagnosis of autism….this is the ONLY way to proceed. Congratulations for moving this forward so quickly. It may not seem quick since Swedo’s paper was published in the ’90s but honestly, this is light years ahead of what families of children with a diagnosis of autism have had to fight. My son has PANDAS and autism. I have seen the difference in fighting this alongside the families of neurot-typical children. Believe it or not, you get more respect from medical professionals than families with children on the autism spectrum. I was struck by a parent at our last support group meeting lamenting the fact that this is a medical condition for which her insurance company won’t recognize the treatment. They have insurance and want it to pay for IVIG. Because of my life as a parent in the autism community, I thought to myself that this is how we have felt for years and years.
    The good thing…if there is a good thing…is the path has been laid by autism. We know what to do! You get the medical studies showing the connection and the outcome from effective treatment and then you work to get the treatment determined to be medically necessary. (If you need to get a legislative mandate, we know how to do that too!)
    This may happen more quickly because you are on the path NOW and you are parents of neuro-typical children and you may get dismissed as “just a parent” but you won’t stop and you will prevail for your child. Those of us with children on the autism spectrum are fighting right beside you and we know this path and your feelings. we know how it feels to be told that “yes your insurance covers speech therapy (read IVIG) but not for autism (read PANDAS)”.
    So thankful there are other parents out there to march with in this battle. I am exhausted from the autism fight. I would take “just autism” back in a heartbeat…and I fought so hard to overcome to improve that outcome… oh well, I am here and I am with you and I may have a few ideas along the way because I have walked this path before. bless you all. Teresa

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      May 26, 2012 @ 14:05:04

      Thanks Teresa,

      As a nurse, I completely agree that having the medical studies to support additional research, ICD listing, and insurance coverage are clearly the path to helping our children.

      I do realize PANDAS, although not getting the respect and coverage it should at this point, does receive more than ASD… very sad. I do hope in moving forward with PANDAS-PITAND, we will also move forward with ASD and help all our children!

      As exhausted as I am from fighting the last 4 years, I can only imagine how exhausted you must be in the efforts you have made in the autism fight and now, including PANDAS-PITAND!

      Blessings & hugs!

      Reply

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