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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5 Comments (+add yours?)

  1. Wilma
    Apr 06, 2011 @ 22:33:57

    How many infusions has your angel had? My heart aches for you and your family. I have a sick girl that is going through exactly what your little one is going through. Have not tried the IVIG yet, but thinking about it…

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      Apr 07, 2011 @ 00:06:15

      She’s had several high dose IVIG infusions, Wilma – a total of three so far and we are working on scheduling her for every four weeks for the next few months in efforts to stabilize her. Because of her immune deficiency, we started with low dose in mid-December. She got much worse…. we called 911 ambulance five times (and went to ER each time) in a two week period around Christmas… she was hospitalized the week of Christmas (released Christmas, mid-day). She had her first high dose IVIG in the hospital; woke the next morning and said that she felt better than she had in a long time… didn’t remember how long, but said she felt “like herself again”. She clearly improves with every infusions… and clearly declines just past the three week point.
      Let me know if I can help with anything. It’s not right for every child, but for her… it’s helping.

      Thanks Mom. ♥

      Reply

  2. Mom (Nana)
    Apr 06, 2011 @ 23:42:55

    Praying, praying, praying. My heart breaks for you, but I agree that God is with you and will give you strength and guidance. She will be healed.
    Love you all, and I send blessings and hope.

    Reply

  3. Harold E.Grubbs
    Apr 07, 2011 @ 00:45:20

    Denise and Dan,
    I am so sorry to hear of this latest attack (hope you understand) by Satan. He is our great adversary. He is a destroyer and only means evil. In John 10:10, the following is a characteristic of /satan, the evil one “10 The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly.” II Cor. 12 :7 the Apostle Paul, “…there was given me a thorn in my flesh, a messinger of Satan, to torment me.”

    Isaiah 53:5 “…by His stripes we are healed.” I don’t remember in my prayer if I pled the blood of Jesus to cover her for healing and protection. Remember it was the blood of the Lamb sprinkled on the door posts and lintels which offered protection for the children of Israel from the death angel. So Isaiah (above) that declared by His stripes (wounds) we are healed. So, Dan and Denise, I now in Jesus name plead the blood of Jesus over your whole household in general on Faith in particular. Remember satan is a liar. Destruction and lying and deception are his stock and trade.

    Be assured that the entire God-Head loves you, each one, Father, Son, Holy Spirit

    Prayerfully and lovingly,

    Dad/Harold/Grampa Harold

    Reply

  4. A Piece Of Cake
    Apr 07, 2011 @ 09:09:43

    While not understanding these medical terms, know that I am praying for your daughter, you and family. I know that God is a healer and that he has your daughter in his hands. I pray that you will remain strong, keep the faith, and keep focused to do all of the things that you and your family need to do to help and protect your daughter. I always tell my children that we complain about the least of things, but when we look around and hear what other people have to endure, that we are so blessed. Continually praying for your strength in the Lord.
    Tina

    Reply

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