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

Update

Well… last week was pretty good.  On Tuesday, we went out for a belated Valentine’s Day luncheon.  Faith looked so healthy and seemed so happy that day.  I don’t remember seeing her so… well… herself in a long time.  She ate a good lunch, the waitress commented on what a mature and lovely young lady she is… yes, that’s true … and thank you for noticing in front of her; she needs to hear that these days.  ♥

March 15, 2011... belated Valentine's Day Luncheon

Go ahead… click on the photo for a better look… Doesn’t she look lovely, healthy and self assured here?  🙂  She is actually… much, much more!  What a remarkable young lady my heroine is!

March 15, 2011 - belated Valentine's Day luncheon

I’ve been trying to get her out for more exercise… looking toward getting her back to school and having the stamina to get through what will likely be a modified schedule.  Also, the fresh air and exercise seem to help her.  Sometimes we take our golden retriever with us when we go for a walk or a bike ride.  Other times, it’s just the two of us and we go all over the trails near our home; we’re blessed to live in a historic, lovely area with a lot of wildlife to enjoy!  🙂

Thursday evening… March 17, Faith even went outside and rode her bike with other kids in the neighborhood.  !!!!!  😀  Dan and I were so excited for her to see her do that and have a sort of ‘normal’ evening… it’s been so long, she’s lost so much childhood… so much has happened.  Yes, I do realize what a ‘normal’ activity it is for a child to ride bikes with the neighborhood children… never take the mundane normalcy of life for granted… it’s much more fragile than we realize.  I wanted to shout from the rooftops!!!  My heart sang for her!!!  😀

 

Riding bikes with neighborhood kids – March 2011

That was three weeks after her last HD (high dose) IVIG infusion.  That week was so encouraging!!  I started thinking about her going back to school…. I asked her homebound teacher to bring her work for the core classes we had not yet caught up and had her start working on those… was aiming toward getting her back for a modified schedule, even if it could only be 2-3 days a week in the mornings, for her core classes, realizing she would be tired and need to rest after getting up so much earlier to go to school.  (She continues to sleep until about 11 am – noon; her body needs so much rest to recuperate.)

This week; however, is not as encouraging… it’s more worrisome.  She’s not looked as well, physically.  Last night, she had a severe episode of separation anxiety and seemed “thisclose” to going into one of the full blown rage episodes she was having daily (and sometimes more often) around Christmas when she was hospitalized … which is usually complete with thrashing (think seizure-like, but it’s not a seizure), eyes rolling back and going limp afterward… scary for a parent to observe.  She hasn’t had one since just before this most recent infusion…

Suddenly, she “had” to be with me and hugging me… this translates into a grip in which I sometimes can’t get a breath… sometimes, it is the precursor to a rage episode, thrashing, limp, hallucinations… I did say I would be more candid here.  I realize it’s shocking to think of this lovely Christian honor roll student who is so thoughtful of others suddenly transforming into what I describe. This is what is so alarming about PANDAS/PITAND… the dramatic changes it can bring about in such a wonderful child!  … in ANY child who has a pre-disposition to an auto-immune condition.

Today marks 29 days post her most recent HD IVIG infusion.  The half life is 21-28 days.  I ran a rapid strep test as she’s complaining of strep symptoms and is convinced that she has strep – she is rarely wrong.  The rapid test was negative.  If her symptoms do not improve within a few days, I’ll repeat that myself or take her to our pediatrician.

She is not scheduled to return for her next infusion for four more weeks.  I’m pushing sleep this weekend… pushing rest, healthy diet, fluids, exercise… everything that helps her recover.  If no improvement by the early part of the week, we’re going to have to see our Pediatrician and/or our local Immunologist, who I am working with to determine if we might be able to manage most of her HD IVIG infusions here locally.  Are her IgG levels dropping?  Does she have a new infection?  Did the rapid strep test (they have about a 20% false negative rate with no known false positive rate) miss a strep infection (she remains on twice daily antibiotics; however, she has tested + for strep while on antibiotics and just after several times)?  Has the auto-immune process not been shut down sufficiently?  I don’t know the answers to these questions… I’m praying this is merely a temporary bump and she improves quickly.

Strep is a disconcerting bacteria for my child.

Group A beta hemolytic streptococcus

  1. Strep bacteria are able to disguise themselves to avoid detection by our immune systems
  2. Our immune systems do not initially recognize it as strep; however, the immune system does it’s job and creates a “template” of this new invader, which it knows is not ‘self’.
  3. The immune systems antibodies attack this foreign invader to destroy it.
  4. Sounds like all is working as it should, right?  Yes… except…
  5. We believe that the strep has, in these cases, disguised itself in such a way that it ‘resembles’ the molecules found on cells deep in the basal ganglia of the brain.
    1. This is known as molecular mimicry and is the trigger for the cascade of events in the auto-immune process.
    2. The basal ganglia are a complex group of interconnected components that are part of neurological loops in the brain.  They are involved in processing/regulating information from almost all surrounding cerebral structures, including motor function (and voluntary motor control), learning, memory, emotion, dopamine, sensory input/sensation, motivation (known as “paralysis of will”), inhibition and dis-inhibition (excitatory), vision, judgement, personality, speech.
  6. Thus, the immune system crosses the blood brain barrier (this part is not yet fully understood as the BBB was thought to be impermeable to this) and attacks those areas of the basal ganglia as well, causing inflammation and a myriad of complex signs and symptoms…. many of which are listed on my About PANDAS & PITAND and links page… transforming a previously sweet, intelligent, polite, mature and thoughtful child into one the parents find hard to recognize … personality-wise.

Looking back over the last few weeks, I realize while she has not had a full blown rage, thrashing, limp episode in about four weeks (and we clearly see that as improvement), she continues to have these really intense separation anxiety episodes… last night’s being probably the worst in a long time; although, she had a couple intense ones with me last week as well.

I’m sometimes so eager to have her life back to normal as she has lost so much of her childhood to PANDAS/PITAND, that I forget what I know:  brain injuries take anywhere from several months to years to heal.  It is only then that we have some idea where things stand for long-term prognosis.  When injury is on-going or recurrent, as it is in the case of PANDAS/PITAND, it becomes difficult to know when the injury stops and the healing process begins.

I’ve been sitting here staring at the computer trying to think of a more positive way to complete this post… I’m at a loss.  She is where she is at the moment.  She does have a few good hours some days, but they are in the midst of a challenging recovery.  Today has been difficult as well.  Time… Time will tell….

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