High Dose IVIG Infusion # 10

High dose IVIG Infusion # 10 starts today (Tuesday, May 15) & will hopefully, be done by Thursday evening.  She’s in good spirits, after being able to participate in her worship dance recital last night.

We’ve been making dietary adjustments.  We removed gluten in mid-November 2011 and her migraines (that were severe, not responding to medication & were the catalyst for two back to back hospitalizations at the time) improved three weeks later… to the day.  She does still get them sometimes, but they respond to medication now.  Also, since going gluten free, we’ve lost count of how many times we’ve walked out the door and found that it’s raining.  This is of huge significance for both of us as our migraines have always been so strongly triggered by weather that I stopped checking weather years ago, since my migraines were a more reliable predictor that rain was on the way.

Because she had a dairy intolerance as an infant, I also removed dairy from her diet a few weeks ago as a trial to see if it helps – like gluten, removing dairy does help a lot of kids with neuro-immuno issues.  I also started her on daily green smoothies… and… the Blendtec Total blender (with the new Wildside jar) my husband ordered for me just arrived!!!  This is a pic of one similar to ours… and yes, we’re blending most, if not all (& more!) of the items you see in the pic in our green smoothies:

Photo from: http://www.terawarner.com/blog/2011/03/meet-our-st-pattys-green-smoothie-challenge-blendtec-winner-jean-guerini/

I was only able to use it one time before we headed to the hospital last night for her infusion today.  The blend was amazingly smooth!!  It was neat to see how much smoother than our regular blender was. What a delicious way to eat our greens & other nutrition!  The last couple of weeks, I’m seeing her slowly start to improve… she still has a way to go, but we’re thankful for all improvements, no matter how small.  🙂

I’ll try to check in later… prayers are very appreciated that this infusion will go well as she has consistently been having severe headaches (sometimes with vomiting and fever) that last for nearly a week following these infusions.

Thank you for following her story and praying for her and our family… you’re each a blessing to our family!

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…

♪ ♫ 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. :~)

Healthier Easter Egg Coloring

Colored Eggs

A friend posted this on Facebook and provided the link for me to share with all of you… How to Make Your Own Homemade Easter Egg Dyes By Tony Isaacs on 03/26/2011

Coloring boiled eggs has been a longtime Easter tradition. However, many of the food dyes commonly found on grocers shelves are synthesized from petroleum derivatives and even coal tar. This year, why not provide a healthier Easter for your children by making your own safe dyed eggs and opting for healthier substitutes for most or all of the candies.

In addition, some food dyes based on natural ingredients may come from items you may not care to ingest. For example, the common red food coloring agent carminic acid comes from the dried, crushed bodies of pregnant scale insects.

Plant-based dyes for coloring Easter eggs provide a synthetic-free and bug-free alternative and their muted yet vibrant colors are far lovelier than their counterparts. Children seem to find that mashing food is also much more fun that simply dropping a tablet in a cup. As well, it is a great lesson in creativity and exploring which plant materials works in which way.

Some materials work best when they are boiled with the eggs (as noted below), and some work well made ahead and used for dipping or soaking the eggs. If you use juice, just use it undiluted. The longer you let the eggs soak, the more intense the color will be (for the boiled versions, you can remove them from the heat and allow to cool in the dye bath).

You can use your favorite egg-dying tricks here as well: Like crayons for a batik effect or rubber bands for a tie-dye effect. If you like a glossy egg, you can rub the dyed eggs with vegetable oil when they are dry.

Homemade Dyes

Red

Red-onion skins, use a lot (boil with the eggs)

Pomegranate juice

Orange

Yellow onion skins (boil with eggs)

Yellow

Lemon or orange peel (boil with the eggs)

Carrot tops (boil with the eggs)

Celery seed (boil with the eggs)

Ground cumin (boil with the eggs)

Ground turmeric (boil with the eggs)

Yellow Brown

Dill seeds (boil with the eggs)

Brown

Strong coffee

Instant coffee

Black walnut shells (boil w/eggs)

Yellow Green

Bright green apple peels (boil w/eggs)

Green

Spinach leaves (boil with the eggs)

Blue

Canned blueberries and their juice

Purple grape juice

Red cabbage leaves (boil with the eggs)

Violet Blue

Violet blossoms

Red-onion skins, less amount than you need to make red (boil with the eggs)

Lavender

Diluted purple grape juice

Violet blossoms plus squeeze of lemon (boil with the eggs)

Pink

Beets, fresh or canned

Cranberries or cranberry juice

Raspberries

Red grape juice

Other Healthy Easter Suggestions

Limit chocolates to small amounts of healthier dark chocolate. And fill your own plastic shells with healthy items such as:

  • Trail mix, mixed nuts, bagels or pretzel mix (you can also make your own trail
  • Granola or popcorn mix (choose healthier organic versions)
  • Organic cereals
  • Raisins, dried apricots or other dried fruit
  • Coins or dollar bills

You can also fill up their Easter baskets with fun non-food items that encourage their creativity.

  • Add books by children’s favorite authors, along with fun and colorful Easter-themed bookmarks.
  • Fill the basket with small stuffed animals and/or with toys your kids can use while staying active outside, such as sidewalk chalk, bubbles, balls and sporting equipment.
  • Consider stocking the basket with small gifts designed to encourage creativity in your children, such as paints, brushes, puzzles, coloring books and crayons.
  • Add various kinds of seed packets and some gardening tools so your child can plant flowers or vegetables and watch them grow. Gardening is wonderfully healthy for children and spring is the perfect time for your children to pick up gardening.

Home from out of state doctor trip – update

We arrived home safely very late last night.  She looked really good during the infusion itself; but, clearly sinking on the way home…. nothing as bad as on the way home from the Christmas hospital admission – not even close.  But, could see her color was fading and the circles under her eyes were prominently dark.  “Flipping back the pages” is a known situation following IVIG infusions for PANDAS kids.  I did see a bit of an increase in her OCD symptoms last night.  She was determined that the locks for the tray tables on the airplane must be straight – vertical if closed and horizontal if open.  If I turned them crooked, she “had” to correct them.  I asked why and she said, “they HAVE to be straight”.  When asked about all the others on the plane (don’t worry – we were about to land 😉 ), she said she couldn’t see those.  Whew!  She was playful and smiling about it this time, but unable to leave them crooked.

She went to sleep as soon as we arrived home, without changing… good thing she was wearing comfy, soft leggings and a t-shirt.  I was not far behind her.  I had a very rough night at the hotel with very little sleep and was exhausted… hopefully, we will both be able to rest a lot today and this weekend.

Did I mention Whole Foods?  There is one near her doctor’s office – I really wish we had one near us, but we don’t, so I brought an extra bag (and bought another while there) so I could stock up on healthy, gluten free foods for her.  I bought Bob’s Red Mill gluten free flour as well… I might be able to get that locally; going to check – that would be best as I am happy to make my own things from scratch anyway.  At our first visit with her doctor last month, he indicated that we should be avoiding processed foods; fast foods, etc. and opting instead for the freshest choices, made at home, so that is what her dad and I are working toward providing for her to help heal her immune system.  Because there is so much improvement noted for PANDAS kids with dietary changes including gluten-free and casein-free and because Faith did have some food intolerance‘s as an infant and has been so very ill with this condition, and has CVID, I am also working to eliminate those for her, in addition to strictly limiting sugars/carbs due to her Reactive Hypoglycemia.  The dietary issues are certainly challenging, but as they help her immune system to heal and her health to improve, the benefits are clear.

This morning is typical of the day after her high dose IVIG infusions, she tells me that she:

  • feels more like herself
  • sore throat is gone – she has one constantly from strep infections, but the infusions are helping enormously!
  • headache is better – rating at 2-3 now – it’s usually a 4-5 on pain scale of 1-10 (10 being worst pain ever experienced)
  • nausea is non-existent this morning; that may change as day proceeds; often worse at night, but she feels well today.  🙂

That makes for a relieved and deeply thankful Mommy!!!  😀  Her doctor wants her back in eight weeks for the next infusion.

I am still exhausted and have to run to the pharmacy to pick up some scripts for her… hopefully, we’ll be able to rest more; these trips are so exhausting (probably more for Mommy than patient, but that’s ok ♥), but the result of improved health for her is completely worth the sacrifice!

We met a couple of other PANDAS families from various forums while there, as well as others having infusions at the same time.  It is always helpful to Faith to meet other children struggling with PANDAS as she often feels so alone in fighting this disease.  Meeting others helps her to connect and helps restore her self-esteem.

I’m so thankful that we FINALLY have a doctor who specializes in PANDAS, who is able to help her, after all these years!!!  I am also thankful for safe travel and all the love, concern and prayers of family and friends!!  God is soooooo good!!!  🙂 ♥♥♥

PANDAS / PITAND Awareness Ribbon Silly Bandz

As most of you already know, with Faith’s input, I designed a PANDAS / PITAND Awareness Ribbon.  Dan took a photo of me and Faith holding hands and she chose the one she liked the best.  I used that image to create part of the Awareness Ribbon.

There has been interest in the PANDAS / PITAND community about having it made into tangible products and I am interested in proceeding with this plan.  I want the profits to be used to support research of this condition.  I emailed Dr. Madeline Cunningham about this idea and she responded that she would be happy for any support as they are “overrun with work and testing”.

I’m looking at Cafe Press for having the image printed on t-shirts, buttons, magnets, bumper stickers, etc. … that people would be able to purchase individually.

However, while working on this idea, Faith suggested to me that we have green silly bandz made for kids who have this condition.  Great idea!!

I mentioned to Dan a day or so later that I wanted to get those ordered very soon… he suggested that I include some sort of card that will tell about the condition.  Great idea!!

In fact… I think I will combine those two ideas!  🙂

Today, I ordered 1000 green ribbon silly bandz in the shape of an awareness ribbon. They will look something like the pic below:

 

PANDAS/PITAND Silly Bandz

It will take 3-5 weeks to produce this custom order and they will package and ship them once they are ready.  I am looking into having a card made (I might make it myself for now to help with costs) that we can slide inside the packets so that each silly band will have an informational card that goes with it.  Each package will contain 10 green ribbon bandz and 10 informational cards.  Funds collected from the sale of these will go to support research for this condition.

 

If you are interested in purchasing a package of these to help raise awareness and support research, please let me know!  Thanks for reading my blog and have a great day!  🙂

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