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

Home – infusion # 6

We returned home from my nephew’s wedding and my Granny’s memorial service this weekend and Faith had part two of infusion # 6 today.  She has about a week left on this 14 day course of Rocephin (following 2 weeks of Clindamycin), but her throat remains red and sore and she says she still feels “streppy”.  We have another appointment with a specialist this week, who is considering plasma exchange in her case as we are no longer seeing the dramatic improvements with the high dosage ivig infusions that we did in the beginning … and we’re having so much trouble eradicating the strep throat – that is another piece of the puzzle we need to resolve.

We woke this morning to a bit of a flood in the kitchen.  A broken pipe for the downstairs AC was dripping (mmm… perhaps dripping is not the best word… flowing, yes that is closer) inside the kitchen exterior wall, soaking all the wood and insulation in the wall as well as the wall itself, the subfloor wood and we’re not yet sure what else.  Fortunately, a plumber arrived fairly quickly and was able to go fetch the appropriate elbow joint to repair the pipe.

The insurance company’s restoration service is here now and working on ripping out walls & floors – the kitchen floor and family room carpet will have to be replaced as well as some personal effects sitting in that area.  Looks like we may lose functionality of our kitchen for a while.  But… even as overwhelming as the shock of the water everywhere, the damaged flooring and walls, the unbelievable mess… we are blessed that insurance will cover all but our deductible.  So, we’ll take this with the rest… one day at a time, trusting God will work everything according to His plan.

And… gosh… we sure do hope for a break and a vacation soon!  Whew!

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