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.
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PANDAS-PITAND Awareness Ribbon

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Update on Faith and new Labs

As many of you know, Faith has been having a difficult several weeks/months and declining again with PANDAS (now called PANS) symptoms.

After being on home-bound education for most of last school year, she did return to school briefly with a late start and a modified schedule.  Although she was exhausted at the end of every school day, she had a confidence I had not seen in years.  She was probably about 80-85% in remission at that point and while still episodic, had been on a positive trajectory of healing.


It didn’t last long.  By mid-October, she tested positive for Streptococcus Pyogenes (Group A strep – causes strep throat) again.  If she cleared that one, the PANDAS symptoms didn’t really decrease very well.

She was hospitalized by the end of the month for a few days due to severe migraines.  She was discharged end of October, only to be re-admitted 2 days later for migraines that would not respond to the plethora of medications they were giving her.  More tests and labs… nothing.  We learned that a cousin of hers has Celiac Disease and mentioned this to her Neuro-immunologist.  Faith was negative for CD; however, her doctor suggested we try a gluten free diet for three months to see if it helped.  As the migraines continued, we started that one week prior to Thanksgiving. Her smile seemed forced and didn’t reach her eyes…


At three weeks to the day, the migraines decreased and stopped.  She has had only one since early-mid December that did not respond to medication, but she was uneasy about an upcoming MRI at the time and it vanished soon after the scan…. which was normal.

On home-bound education again, she started pressing through her coursework, catching up on what she missed; however, as the weeks passed, she was clearly declining with a return of PANDAS symptoms.  Christmas came and went… growing into a lovely pre-teen… still, there was something about her smile and eyes that probably every PANDAS parent knows is a warning sign…

  
By late January, she was getting sicker.  She stated she felt certain she had strep throat, but it hurt too much to get a good swab.  Our Pediatrician indicated we should start the antibiotics.  We traveled back to see our Neurologist and PANDAS specialist recently for discussion about her return of symptoms.

She left the antibiotic our Pediatrician ordered in place for 2 weeks and ordered another one to follow it for another 2 weeks.  She also ordered labs to check for known infectious triggers as well as check her Immunology labs (which you may recall, were found to be deficient in October 2010).  Faith had six high dosage IVIG infusions last winter and spring before taking a break over the summer.  When we checked her labs 2 months later, her Immunology labs were in the normal range for Immunoglobulin G (the one that fights infection), although her IgA levels remained somewhat low – thankfully, this has never been so low that she can’t receive IVIg.

We just received the results of the new labs.  These labs show her IgG levels lower than they were in October 2010 and she’s been having a significant return of symptoms.  At this point, she’s unable to complete any schoolwork or meet her homebound teacher for even 30 minutes most days.  The separation anxiety is severe, at times, intense, she’s tired and although she is an honor roll student, her grades have been falling recently as she is not processing well…. and there are many other symptoms.  I have calls in to her medical team to discuss and from what I am hearing so far, it sounds as if we are heading back to the high dose IVIG infusions… at least, temporarily.  We’ll have to see what the rest of her doctors think and how she does on these.  I would estimate she’s about 60-65% remission now, but she estimates about 45-50% and says she is working very hard to hold it together and seem ‘ok’.

We appreciate prayers for her remission… and for us too as we work to help her.  The following video is from a news report in which Faith’s doctor appears, as well as two families also on this journey.  Her doctor states, “These kids are acutely aware something is wrong with their brain… These kids are very, very sick.”

Could Strep Throat Cause OCD?

STAR Test Results

My daughter’s English teacher informed me a few days ago that she would be administering the STAR Reading test on Monday (yesterday) and that she would like Faith to take the test.  It does not count toward their grade (not relevant in this case as she has a strong A in most of her classes… we don’t have final for one of them yet); but, is a placement guideline to determine on what grade level the student is reading.

An avid reader, she’s always been 2-3 years ahead of her grade on these types of tests.  Last fall; however, heading into the worst exacerbation of her life (we hope and pray she never experiences anything as severe again), her score dropped a little (I think it was grade level 8.0) from what it had been the prior year, when she was in 5th grade (I think she tested at grade level 8.3 in January of her fifth grade year).  I knew the assessment in fall 2010 (6th grade) was not accurate, but they left her at that level until she could re-test.

As it turned out, she was too ill to attend school most of the school year and simply read for pleasure at home…. like me, reading has always been one of her favorite hobbies.

She took the test and told me when she got home that she was the first one done and the test was easy.  I wasn’t sure what to make of that.  She is NOT taking antibiotics and in the midst of a PANDAS exacerbation as we pass a few days waiting to do a strep throat culture at the doctor’s office at the end of this week (Friday).  As I posted last night, she had a rough day at school, followed by a rather difficult episode that evening.  It’s clear that the antibodies are swinging into full gear as they attack her brain.  It’s difficult and painful to witness.

In any case, she told me this evening that she received the results of the STAR test she took yesterday.  Her assessment places her on a 12.1 grade level.  🙂  Yes, you read that correctly.  My ‘almost done with 6th grade’ daughter is reading on a 12.1 grade level… an increase of 4 grades since the autumn assessment and almost double her current actual grade level.

I am so proud of my precious daughter, who never ceases to amaze and inspire!  Way to go, kiddo!!

Off all antibiotics temporarily

As most of you know, Faith has been on antibiotics most of the past 15 months to try to eradicate the resistant strep throat infections she has, that lead, in her case, to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).  She’s has not attended school since mid-December & soon after a hospitalization for several days at Christmas, she started Homebound Education to keep up with her studies.  She’s worked very hard on her school work and her grades are good; I anticipate she will make honor roll and I am so proud of her!

However, the strep infections continue to resist treatment.  Thus, our pediatrician is pulling her off all antibiotics temporarily to allow them to get out of her system so that we can do a C & S (culture & sensitivity), in hopes that this will, once and for all, give us the information we need to choose the correct antibiotic(s) to eradicate this incredibly virulent Group A beta-hemolytic strep infection.

She took the last dose of her antibiotics yesterday morning.  Just as I was learning about a social situation she struggled in while at school today and we were discussing it, she declined into an episode.  This one included severe separation anxiety where she was unable to detach from me (literally and physically), unless there was a locked door between us so I could use the restroom, at which point, she became panicked (had a panic attack), tried to get through the door (in her panic to get to me) and became mute… she was able to write what she wanted to say (although with barely legible handwriting… see handwriting examples below), but could not speak for a while, and then, not clearly enough to be understood.

It lasted probably about 1/2 hour for the worst of it.  Poor child… my heart breaks for what she goes through when the antibodies attack her brain like this.  All I can do is imagine what it must be like to endure this medical condition.

Prayers for her (and the results of the strep culture that will be done this week) are especially appreciated these next few days as she is without any antibacterial support as we seek to determine our next step for that medication to eradicate these seemingly never-ending strep throat infections.  Also, she is trying to attend this final week of school (last day is Thursday, this week), making it more of a challenge for her than being home.  Hopefully, this difficult week will pay off with great results if we can gain valuable information from the C & S.

Please see below for more insight into this condition with handwriting samples of hers over the years, both when she is not afflicted with this condition and when she is.  As always, if you should have questions at any time, please feel free to comment or use the Contact Us page to email us.  Thanks for following our story; God is with us on this journey!

Second grade, spring 2008

Homework in 6th grade, Spring 2011 (taking antibiotics, but strep not yet clear)

May 8, 2011 for sample on right on card (uncertain of date for left sample on paper) Sample on right -> taking antibiotics, but not yet clear of strep infections... 2 days post IVIG infusion @ higher dosage

June 13, 2011, evening -> middle - end of episode (typical sample when episodic)

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