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

Sick girls…

Ok, so… Faith insisted that she had strep over the weekend.  The child has yet to be wrong (maybe one negative – perhaps a false negative as she tested positive again soon after).  You probably will not be surprised that I have rapid strep tests at home – ran one – negative.  She insisted more fervently the next day… ran another that night – negative.  By Monday, there was no question for her that the strep tests were false negatives (there is about a 20% false negative rate on those) even though I checked controls on the second one.  Brought her to see our Ped today… who ran a strep test.

Does anyone care to guess the result?

Yes, that’s right… he came back in the room and announced it is positive and yes, she IS on antibiotics – and no, it is NOT a prophylactic dose, it’s a treatment dosage that just like all the others all these months – is not working (and yes, I DO know that is a run-on sentence, just in case anyone thinks I don’t know any better).

Grrrr!!!!  Not at him… her Pediatrician is a wonderful doc she has had since early infancy, but may I just say that I HATE STREP!!!  I looked back over her records to confirm what I suspected:  following her T/A (Tonsillectomy/Adenoidectomy) in August 2009 after which we saw improvement for several months … until she caught strep again in spring 2010… it was March 5, 2010 when she started back on the antibiotics.  It has now been over a full year since she has been able to actually clear a strep test and hold it longer than… oh say, about three days… perhaps never cleared as I didn’t always take her in the day after she completed antibiotics in the beginning.  Now, I’ve seen her test positive while on antibiotics several times.  Further, she now has a few high dose IVIG’s under her belt.

So now she is on Augmentin AND Azithromycin and we’ll check in with our Ped again as we near the end of those to determine where she is on this and what to do next.

She has thrush also…. he bumped her Culterelle (adult dosage) to three times a day instead of twice and we’re looking into Kefir grains so we can make it for her since there are more probiotics if unpasteurized, so it is more potent at helping with such issues.  Diflucan too… and immune supplements – two of them, twice daily.

Immunologist here (having terrible time reaching the one in CT) says there might be something in her labs for Mycoplasma Pneumoniae and for Lyme Disease… our Ped’s office is looking into getting me the name of an LLMD (Lyme Literate Medical Doctor) we can see to help interpret those labs and if she needs Lyme treatment before further IVIG… which she may need more often than she is scheduled at this point since she is clearly not clearing strep yet.

Did I mention that I was up vomiting several times last night?  Obviously, recurrent strep makes me sick!!!  … in more ways than one!  😉  Initially, I thought that was a horrible migraine warning me of impending rain (yeah, I have a clever meteorology system built right in), but not so much now… still weak and a little dizzy from that but I’m loading up on the fluids and electrolytes… Mommy handbook says no sick days.

Sigh…. I am tired.  I think I am going to put the entire situation on hold for this evening and watch a movie with my little one.

Pray for us?  Please?

I do know God is with us; going to take a break and trust in Him.  ♥

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