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.

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PICC line & Tea Room

I was up at 4 am this morning to prepare to leave for a 6:30 am appointment at our Children’s Hospital… had to allow for traffic & travel time.  I woke her just in time to leave the house.

Arrived, checked in and got breakfast, then up to the floor where we waited for assessment, pre-paperwork, etc.  The RN doing the procedure placed a numbing cream on her upper arm… both sides, although we both liked the look of the left side better.

Waiting for pre-assessment

Video game distraction while waiting for her nurse

Soon after, she took the medication for the procedure and we went down for placement of the PICC line.  She looks so ill in these photos… pale, reddened circled eyes, poor babe… but that’s what we’re here to correct!

Placement was completed without complication (left arm, as we anticipated) and x-ray confirmed correct location.  It flushed fine three times and was ready for use.  As usual, Faith was a model patient… so calm that they only gave her the anxiety dosage of the medication that is usually given in sedative dosage for this procedure.  She was very interested in the procedure itself and watched the entire process…. hmm… any idea where she gets that???  😉

After PICC line placement – watching TV

After PICC placement – Cocoa has a PICC too! ♥

Another RN ran the antibiotic and she was ready to go…. sometime after noon.

We had lunch at a nearby Tea Room, which was nice… aside from a few minutes when we first arrived and were waiting to be seated… I’ll share for the comic relief value, so try not to throw anything at your computer screen while reading and simply skip the next three paragraphs if you’re only here for the medical updates.

A woman who apparently worked there (she took our reservation over the phone), came out to greet us and within less than a minute of meeting us for the first time (Faith, mentioned we just left the hospital after having her PICC line inserted because of recurrent strep throat infections), went into a hard sell mode that she really believed this and that were the answer to what was causing Faith’s condition and getting her well.  Sigh… some people don’t take cues that another is utterly exhausted from the journey of caring for or being a chronically ill child with a serious health condition, is only here to have a break for an hour and enjoy a mother-daughter lunch as a treat in this difficult journey… and not interested the “instant cure” of a stranger who knows nothing about the situation.

Nevertheless, she had “cures” for Faith, for cancer (“Cure any cancer at home for 5-15/day”)… the list seemed to be endless.  Among the most ironic comments she made were that in this book I would read (that she wanted me to purchase) how I should cut back my child’s sugar intake – lol… right… my child who is on a diet of very limited carbs and sugar.  Okaaaayyyy… ironically, this part of the conversation took place over a table of sample pound cakes – several with artificial sugar substitutes.  Next, she informed me that I could “Google” to do some research…. WAIT!!!  Hold everything!!  You’re telling me that I can actually look up information on my computer?!  ???  No way!!  That never even crossed my mind in the two plus years we’ve been dealing with severe exacerbations of this.  I didn’t even bother to tell her that as a nurse (Faith had already mentioned I was an RN in an unsuccessful attempt to turn off the verbal barrage), I do my research on PubMed.  Her next attempt at what I like to refer to as used car sales was to try to get me to purchase some of their products by shoving a flier in my hand and telling me how I could use their sauces to make a wonderful meatloaf… yeah, I put it back in front of her.  I think I can handle meatloaf, thanks.  She gave me her “personal card” and mentioned there was some information there I should look into as well… now, you might be surprised to learn this; but, it turns out that her “personal card” informed me that she is in business with ViSalus, which is a multi-level marketing company.  Ahhh yes… it’s all coming into focus now… even for a woman operating on very little sleep.

Now, those of you who don’t know me well might not realize the effect that a pushy salesperson has on me.  If I was considering purchasing before, you can rest assured I won’t be now.  🙂  I told Faith I was about to walk out, but she pleaded to stay and given what she’s endured in the last few days, I didn’t have the heart to take that away from her too.  I was appalled that not only would someone be using this Tea Room as a place to recruit unsuspecting patrons; but, she also chose to prey on exhausted parents weary from fighting to save their children.  Ugh… horrifying.  Anyway… either she finally got the message after we walked away yet again or we managed to dodge her after that.  I did keep her card… wanted to be sure I get her name right when I report her.  On to the Tea Room luncheon… 😀

Sometimes, when Faith wants something and I tell her “No”, she does what you see in the photo below… sticks out her lip, circles an angel halo over her head and gives me her best big brown eyes look.  hehehehe  It’s totally adorable and has become a family joke over the years.  It never gets her what she wants, but she knows I love to see her do it (when she can pull if off without dissolving into giggles) – always gives me a chuckle!  Today, I caught it on camera – I LOVE this face!!!  😀

Pouty Angel Face – love this!! ♥

Fortunately, the afternoon tea itself revived us a bit.  We love going to Tea Rooms… it’s a favorite Mother/Daughter outing for us!  We had a lovely lunch of tea sandwiches, pomegranate tea, fruit, vegetables and pound cakes.  The Pomegranate Tea was absolutely fabulous and the almond pound cake was very good as well. Personally, I would have preferred more vegetables and sandwiches and less cake, but oh well… we left satisfied.  😉

Tea Room Luncheon

Arrived home … eventually… plenty of traffic… several calls back and forth and we were established with home health to receive medication and let a nurse come to the house for the 24 hour site check, dressing change and the first infusion.  Praying that the OCD does not cause her to pick or pull at the PICC line or dressing/bandage.

Meds are here, schedule is set for tomorrow… and I am one tired Momma!!!  Time for some precious sleep!!!  😀

Zzzzzzzzzzz

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…

Facebook Awareness Ribbon page opened – please “like” us!

I have now made public my Facebook page for information about the Awareness Ribbon.  Please click the button below and “like” the newly public page to stay informed about the ribbon and how it is being utilized to raise awareness & funds for research!  Thanks!!

PANDAS PITAND Awareness Ribbon Silly Bandz have been ordered!

The copyright for the PANDAS/PITAND awareness ribbon is underway!  More info about the ribbon and it’s other uses will be on the way soon… for now – we have news about the Silly Bandz!!

I have confirmed the order for the Silly Bandz in the shape of an Awareness ribbon.  This was Faith’s idea to have silly bandz made based on the ribbon I designed.  Proceeds from the sales of these will go to support the research that Dr. Madeline Cunningham is doing related to PANDAS/PITAND.  Many of you may be familiar with her Cam Kinase testing and her research in the area of Molecular Mimicry and Auto-Immunology.  I am establishing a second web location for information about these silly bandz and other awareness items to simplify ordering and processing for fund-raising efforts.

PANDAS/PITAND Silly Bandz bracelets

These are the high quality original Silly Bandz as they are working with us on production of these!

We are very excited about these Silly Bandz bracelets (and other items on the way soon) being utilized to raise awareness and be a non-threatening way for kids (and adults) to share information and support their friends/family (or friends/family of Parents who have children with PANDAS/PITAND) with this condition; as well as raise funds for research.

If you are interested in purchasing these, utilizing them for fundraising for research (such as walk-a-thons, school, etc.) please “CONTACT US” as we will be happy to partner with you or your organization.

Holding hands…

From the devotional, Jesus Calling:

“The journey is arduous at times, and you are weak. Someday you will dance light-footed on the high peaks; but for now, your walk is often plodding and heavy. All I require of you is to take the next step, clinging to My hand for strength and direction. Though the path is difficult and the scenery dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. It is truly the path of life.”

Psalm 37:23-24: “A man’s steps are established by the LORD, and He takes pleasure in his way. Though he falls, he will not be overwhelmed, because the LORD holds his hand”

Thank you Lord, for holding our hands! ♥

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… ♥

♪ ♫ Music page ♫ ♪ updated ♫ ☺

The Music page has been updated and includes a variety of songs.  Please turn on your speakers and click here to visit it. :~)

Tangled! :D

So… people often ask me how I do this… how do I walk this incredibly difficult journey day by day, researching the best treatments for children with PANDAS/PITAND, caring for a child who remains ill, meeting with usually several doctors a week, etc. Hmm… well, I admit that some days are very rough and I do feel utterly drained, exhausted and even defeated at times.  I am human.  I know though… that God loves us more than we can fathom and WILL continue to carry us through this… even the darkest days.  He is always with us on this journey and will never forsake us.  (“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6)

Sometimes, God even chooses to provide examples, such as the following story… 😉

When we went to a nearby hospital for a scheduled IVIG treatment several weeks ago, we learned there had been a mix-up in the scheduling and Faith was not to have IVIG that day.  I met with several administrators about the error as well as to seek increased awareness among their staff regarding PANDAS/PITAND.  As part of the meeting, they wanted to apologize for the confusion and offered us tickets for me to take Faith to see a movie.  😀

She wanted to see Tangled, so I checked the schedule, called and invited her friends and off we went!  We arrived and learned that Tangled’s last showing… was the day before.  😦   I had three disappointed girls… we stopped at a RedBox, got another video and went back to the house to watch it and paint fingernails.  The day was saved – whew!  😉

Somehow, this came up recently and I responded that Tangled would be the next movie we will see … once it is out on video and looks like it is coming to RedBox soon so hopefully…

Ahh… the kindness of others… someone (who has their own cross to bear right now, I might add) … took the time to order and send us a Tangled DVD with a note for Faith.  We were both deeply moved by this incredibly loving gesture.  Faith said, “That is so nice; —– doesn’t even know me!!!”  😀  I choked back tears at this gesture of selfless kindness and tried to find an even voice. “Can we watch it tonight?”  She’s with her daddy tonight; but, I know she is looking forward to it this weekend … early next week, she and I have a date to watch the movie we missed and feel the warmth of others walking beside us through this journey.  ♥

In the midst of the darkness of this journey… God is here, active and demonstrating His love through others.

Thank you… for this amazingly gracious & thoughtful gift… it truly is so much more than a DVD!!  ♥♥♥

Tangled DVD

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