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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Food Fun!

Food Fun!

Please feel free to share these food pics, as long as you credit and link back to my blog page where you found the food pic.

Thanks & enjoy!

😀

Hollow bell of Trombone cake
with removable large and small mouthpieces at far, right end
Hollow bell of trombone cake
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Trombone cake 2012
Front view of husband's 2012 birthday cake
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Strawberry Cake
Hope & Faith - celebrating birthdays together
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Easter Cross Cake 2011
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Creamy Parmesan Shrimp and Okra
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Orange Cream pastry, sliced open
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Chocolate “Lasagna” Cake
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Wedding Reception cake
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Easter Cross Cake 2010
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Side view of iPod Birthday cake 2010
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Steelhead Trout
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Corned Beef Brisket, Cabbage & Carrots
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Glazed Roasted Duck a l’Orange
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Coconut Macaroons
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Lemon Ginger Shrimp & Scallops over Wilted Spinach

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

Please see the following link for an open letter about what it is like to live with PANDAS-PITAND or any other medical condition a child might have.

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

It’s a journey none of us imagined ever taking, but have no choice as we are our child(ren)’s advocate and their future depends on us. ♥

♪ ♫ Music page ♫ ♪ updated ♫ ☺

The Music page has been updated and includes a variety of songs.  Please turn on your speakers and click here to visit it. :~)

Separation Anxiety … Why??

Those of you who have children who have PANDAS/PITAND are likely no stranger to this issue. Those of you who are unfamiliar with it are going to be a little surprised to read this post and learn that an almost 12 year old girl, who has always loved school, her friends and activities… is having severe separation anxiety. I try to keep it mild on here so as not to shock too many people with what life is like for a child who is fighting this condition; however, in the interest of being honest about the real life issues that this auto-immune condition creates so we raise awareness, I’m going to try to be more candid here so people start to understand… and I pray with everything in me that researchers will do more to solve the underlying problem, that health-care providers will get educated and help our children. What we NEED… is to stop the auto-immune process. Please… if you or anyone you know can help… please do!!

Faith’s separation anxiety has been rather high lately. When I say that, I mean that she must be physically within touching distance of me… if not grabbing for me. She almost pushed me over in the grocery store the other day because she was leaning on me so hard… almost trying to climb into my lap. A few nights ago, she suddenly had to be sitting so close our bodies were almost meshed as one on the sofa. If I got up, she followed… even if it was only a couple of feet away.

Someone shared an image recently that reminds us of our children with PANDAS and the fear they feel during separation anxiety.

Frightened Panda clings to Policeman's leg

Frightened Panda clings to Policeman's leg

Heart tugging, isn’t it? That panda bear may as well be any child with PANDAS. This is a visual of what our children are experiencing… and yes, how they cling to us… this has happened once or twice with her dad; but, most of the time, it’s me she ‘has’ to be ‘with’, ‘hugging’, etc. I have literally pried fingers loose and dressed her in an effort to try to get her to school on time… usually late during exacerbations in which the strep is causing her immune system to attack her brain. I’ll emphasize that when we are able to eradicate the strep throat infections and she recovers, I never see such issues.

We had a long talk about this after a bad episode of it one evening earlier this week… she HAD to be within touching distance of me if not actually grabbing at me. What I learned broke my heart anew…

She fears (and could not tell me for about an hour of me reassuring her…. she was convinced that telling me OR not being with me might cause it to happen; yet, she bravely eventually shared with me) that I might run away if she is not with me or if I find out the fear… further, she fears Dan (my hubby, her step-dad) will be angry at her b/c she ’caused’ me to run away. A couple years ago, it was about her fear that I might die if she were not with me… fortunately, I think she has forgotten about that one; however, this one remains and is still about her fear of losing her mom in some way.

I’ll say it again: I can’t even imagine how hard it is to be a child with PANDAS/PITAND. 😥 ♥♥♥

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