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

Declining further… a morning in our life.

She’s getting worse … steady decline since just over 3 weeks past her last IVIG infusion – we’re at 6 weeks post-IVIG today… and it shows.  Deeper and deeper we slide into episode after episode; confusion compounded by fear and exhaustion as the antibodies rage all out war on the basal ganglia area in her brain.  The episodes began almost first thing this morning when she woke.  They lasted for about 4 hours, if I had to estimate… one running into another.  She did not want to take her meds… “they taste bad”.  She did not want to eat breakfast (she has hypoglycemia and for stability of her blood glucose levels, needs to eat regularly)… finally got her to drink a glass of milk at breakfast and eventually got down the meds as well.

Did I mention that the rapid strep tests we ran at home last week… were negative (20% false negative rate on those)… she was feeling worse the next day.  I called our Pediatrician’s office to ask about a med she was taking that can have side effects of headache, sore throat and nausea (these and others she was having are common side effects for this med) and would he be in agreement to change it to a prn med?  His nurse, who knows her condition well, called me back.  “Can you bring her in for a strep test?”  “The ones I ran over the weekend at home were negative; but, I can if that’s what you want me to do.”

Yes, they want me to – he ran one – yes, positive…. yes, even on a treatment dosage of antibiotics twice daily for months.  … and, she has thrush again from the endless antibiotics.  He writes for two antibiotics this time -one twice daily for 14 days and another daily.  He addresses the thrush with several days treatment and bumps her adult dose of probiotics from BID to TID.  I’ve just started making Kefir (kuh-feer) at home… for those unfamiliar, it’s like a liquid yogurt.  It’s very simple to make – just add milk to the Kefir grains and wait about 24 hours –  ready to use.  I make fruit smoothies with it for her.  The homemade version has lots more healthful probiotics than the store version.  We add that to the regimen to help with any gut issues due to the never-ending antibiotics.

I’m working with insurance companies and our specialty pharmacy on several phone calls… trying to get her high dose IVIG infusions processed as quickly as possible since she is in crisis at this point… but I can’t – she is grabbing for me, panic-stricken and severe OCD again.  She is very upset, repeating over and over that she “has” to be with me and/or “has” to be hugging me …. she is within 6 inches of me at all times… if I move one step, she moves also… it’s as if we are dancing… not the kind where she dances on my feet or I twirl her around the room… this one is a cruel, horrible dance brought on by the attack on her brain that has her in this current state of panic… I could not pry the intense grip of her fingers loose from my clothing when I was on one phone call – had to remove my clothing to get into another room so I could discuss information they need to process the high dose IVIG… gave up being passed around from one department to another as her panic mounted higher and higher outside my door all the while calling for me in desperation…. and called our docs office…

I inquire… “Can we do an emergent infusion since she is behind schedule and clearly declining in exacerbation?”  Response:  “Local hospital does not run them on children.”  I provide the pertinent information to move forward with the processing of the order and get off the phone as quickly as possible having asked for help and delegated what I can to the doctor’s staff.  The office manager calls back later and leaves a message… I can go to emergency and call him via the on call system or call her cell if we need emergent care for her – she provides the number on our answering machine.

Deep breath… prayer.  Strep for over a full year during this, her second severe exacerbation – can’t clear the horrible stuff and I am a rather patient person, but at this point even I am feeling enormous strain.  I am her “safe person”… her “comfort person”.  I pray some more, take a deep breath and try to push down the growing worry, turmoil, pain and exhaustion…

~~~~~~~~~~~~~~~~~~~~~~~

“Out of the depths I cry to you, LORD; Lord, hear my voice.
Let your ears be attentive to my cry for mercy.
I wait for the LORD, my whole being waits, and in his word I put my hope.
I wait for the Lord more than watchmen wait for the morning,
more than watchmen wait for the morning.”

Psalm 130:1-2, 5-6

~~~~~~~~~~~~~~~~~~~~~~~~

I open the door to tend to her and wrap my arms around her shaking, sobbing body.  She seems to resign as she leans into me.  My heart is broken anew as I comfort and reassure her, wishing I could clone myself into one who can reassure and hold her and another who can get things done that she… me… our home and our entire family need done.  She doesn’t speak at this point… she’s often unable to during these.  I guide her gently down to the family room and encourage her to rock in the recliner – I need to get us some lunch.

She did not want to eat lunch… could not decide what she wanted… did not like any suggestions I made.  I warmed some leftovers from a recent dinner that she had devoured and asked for more… she refused it.  I pressed for another glass of milk… she refused.  I’m still on the phone during all of this – processing the IVIG approvals takes a lot of phone calls.  I suggested she could add a little vanilla extract, almond extract or maybe some Agave maple syrup – initially she just keeps shaking her head – finally, I hit pay dirt.  She takes the maple Agave, gets a straw and drinks…. praise God!!

Afterward, she didn’t remember.  She usually doesn’t.  This worries me…. I don’t know what it means for her prognosis.  We make it to her appointment with her counselor and I send her inside so I can finish a phone call with the specialty pharmacy about her infusions.  She’s calm now and appears as though nothing happened… save for her lack of a bath and brushing her hair since the sleep study Monday night.  Her counselor gets a brief update on the situation, encourages being nonchalant, calm… she wants to go to church tonight and I’m concerned about this in her condition… she does not recall the events of the morning… he discusses the issues of concern with her and encourages bringing her into the decision-making to try to help her have some sense of control as her brain is being attacked … a situation she cannot control.  I nod understanding.  I feel drained… long past exhausted, strained and stressed… weak… empty… shell-shocked…. like her beautiful brown eyes look lately.

I stop at the market on the way home to pick up something for dinner.  More phone calls about the infusions… she’s slipping again… But, she did eat dinner, thankfully.  An odd rash appeared on her face after her bath this evening…. watching that… and all the rest.  I’ll skip the rest of the episodic evening for now… this was just the first 5 hours of our day.  It’s not the sickest she’s ever been, but I feel her slipping away again and I feel helpless to protect her from her own immune system.

Please… pray for us.  I know God is listening.  In the midst of all this while she was drinking milk earlier, I posted in a PANDAS group and asked for prayer.  Parents were on it immediately… prayers around the nation… around the world.  While they were praying for us… I received a phone call from our primary insurance company at 2:21 pm.  Primary insurance has approved her infusions at this dose for four months; we apply for extension after that or if her doctor changes the dosage or frequency.

God is with us…. God carries us… God hears… God answers… God provides.  In the midst of the worst of this, I am reminded that God is ever-faithful and in control.

We still need approval from secondary insurance before she can get this next infusion… we wait.  We still need to clear the strep before we can stop this vicious cycle of relentless attacks on her basal ganglia… that’s next on the agenda after she’s fully approved for the infusions and scheduled.

Thank you for your faithful prayers… know they are heard and we deeply appreciate them.  Blessings…

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