Update & prayer request

Here are our highlights:

  • Faith had another MRI today (with and without contrast), as well as an MRV.  These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain.  Her headache pain is currently rated at a 6 on a 1-10 scale.
  • Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
  • She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others.  We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
    • She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one.  Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
    • Did I mention that we went Gluten Free in November… a week before Thanksgiving?  Ha!  It’s actually going quite well and we’ve had a lot of fun trying new things!  I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well.  Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden).  While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!!  Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired.  I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis.  I don’t tend to excel in that area.

Please keep us all in your prayers; thank you.

Food Fun!

Food Fun!

Please feel free to share these food pics, as long as you credit and link back to my blog page where you found the food pic.

Thanks & enjoy!

😀

Hollow bell of Trombone cake
with removable large and small mouthpieces at far, right end
Hollow bell of trombone cake
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Trombone cake 2012
Front view of husband's 2012 birthday cake
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Strawberry Cake
Hope & Faith - celebrating birthdays together
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Easter Cross Cake 2011
.
Creamy Parmesan Shrimp and Okra
.
Orange Cream pastry, sliced open
.
Chocolate “Lasagna” Cake
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Wedding Reception cake
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Easter Cross Cake 2010
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Side view of iPod Birthday cake 2010
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Steelhead Trout
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Corned Beef Brisket, Cabbage & Carrots
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Glazed Roasted Duck a l’Orange
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Coconut Macaroons
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Lemon Ginger Shrimp & Scallops over Wilted Spinach

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!!

Ehrlichiosis

Faith’s PANDAS / PITAND specialist called me today about the labs she had drawn in mid-February to determine any co-infections.  The following is a breakdown of the information he gave me today:

  • Lyme Disease = Negative
  • Mycoplasma Pneumoniae = Negative (although she does show prior exposure… perhaps a result of the pneumonia/strep she had as a toddler)
  • Ehrlichiosis = Positive for exposure, which he said means we view that as a positive and treat it

She will continue the daily antibiotics via her PICC line for the strep infections; however, she is reporting that she is not seeing an improvement in symptoms.  I have more research to do to learn if the two are inter-connected (for eradicating from the host) and perhaps making it more difficult for her to clear the strep throat infections.

While adding yet another diagnosis to the list at this point seems daunting at first; I’m relieved to finally know the results of her labs and have at least an initial treatment plan in place.

Rash on Left Arm

Faith was with her dad over the weekend.  By the time they returned Sunday morning, she had a rash all over her left arm and a small area on her left chin. Her PICC line is in her left arm; that is where the Rocephin antibiotic (for the strep throat infections she’s been unable to clear for over a year and are triggering PANDAS in her case) is being infused daily… for fourteen days.

Suspecting the latex in the sleeve over her PICC line (or a chemical used in the processing – this happens with most fabrics, which is why we wash new items before wearing clothing or sleeping on sheets), I removed it, washed the rash areas with soap and water and applied a hydro-cortisone cream.  Continuing the cream, some areas improved, but the area inside her elbow and near the dressing for her PICC line remained very angry and itchy.

Our Allergist/Immunonologist checked it yesterday and thought the same thing I did.  He suggested watching her for symptoms after latex exposure as his first thought was contact dermatitis related to the latex.  He prescribed a stronger cream for her arm (as well as antihistamines around the clock) and wants to continue using the OTC Hydrocortisone on the facial areas… it’s on her cheek now too.

Unfortunately, part of the rash is under the PICC dressing, which we are unable to remove, except for cleaning and changing it once weekly, until her treatment is complete.  Thus, she’s having a rough time with that area.  The PICC line will remain in her arm at least through the end of next week…. we’re waiting for test results on Myco P and Lyme to determine if she might need further antibiotic treatment.

One Step Closer, I pray…

We have received approval from our secondary insurance provider (approval from the first was received yesterday) for Faith’s IVIG infusions.

As most of you are aware, she has been having an increasingly difficult time since soon after the 3 week point post her last infusion.

The specialty pharmacy will be overnighting the medication & supplies to our home.  This formulation is a little different than the one she was receiving recently.  This will be the same one as what she received locally previously and she seemed to do better on this medication so we are hopeful we will see that continue.

The first half of this infusion will be on Friday and the second half will be administered on Monday.

Her doctor is monitoring her progress and her labs and will determine where we go from here… if any adjustments are needed and how long she will require treatment.

Our next step is to eradicate these strep throat infections… we’re working on that…

Thank you all for your prayers… God remains in control and is providing for her needs.  ♥

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…

Even so… she remains a leader ~ thank you, Lord!

Even in the darkness of this journey… she just got a 104 on an English test and holds straight A’s ~ wow, just WOW… brings tears to my eyes!  ♥  I’m so proud of you, Faith!!!  I know how hard you have worked, even in the midst of illness, to complete your assignments.

Thank you, Lord… for restoring enough of her for this!  🙂  Praying she continues to heal/recover… ♥

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.  ♥

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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