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

High Dose IVIG more often

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again.  Clearly, while it helps her, she is not yet stable.  Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes.  At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her.  Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately.  Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation.  We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know.  We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us.  ♥

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